Moét ik meewerken aan een psychiatrisch onderzoek ?
Moét ik meewerken aan een psychiatrisch onderzoek ?
Fonds Psychische Gezondheid
Wist u dat één op de vijf Nederlanders in zijn of haar leven te maken krijgt met psychische problemen ? Zij hebben een depressie, angst- of dwangstoornis, eetstoornis of een burn-out. Voor deze mensen én hun omgeving kan het leven zwaar zijn.
Het Fonds Psychische Gezondheid is een Goede Doelen organisatie die zich inzet voor mensen met psychische problemen en hun omgeving en voor verbetering van de psychische gezondheid van mensen in Nederland.
Het Fonds Psychische Gezondheid doet dit door :
het geven van subsidie aan wetenschappelijk onderzoek en aan projecten waardoor psychiatrische patiënten weer kunnen deelnemen aan de samenleving;
het bieden van heldere en objectieve informatie over psychische problemen;
het aanbieden van de Psychische Gezondheidslijn waar mensen met psychische problemen en hun omgeving naar kunnen bellen voor vragen, advies of een luisterend oor;
het onderhouden van het Depressie Centrum. Dit centrum informeert iedereen die, op wat voor manier dan ook met depressies te maken heeft, zo goed mogelijk over preventie, diagnostiek en behandeling van depressies.
Om dit werk te kunnen doen organiseert het Fonds Psychische Gezondheid ieder jaar de Hoofdcollecte. Daarnaast ontvangt het Fonds een financiële bijdrage uit de Sponsor Bingo Loterij en de Lotto. Voor overige inkomsten is het Fonds Psychische Gezondheid afhankelijk van giften en donaties uit de samenleving.
Vindt u ons werk belangrijk en wilt u ons steunen ? Er is nog veel te doen !
Begin dit jaar ben ik in de ziektewet gekomen met burnout klachten. De bedrijfsarts schreef "psychische klachten" en niet "burnout" op in de probleemanalyse. De volgende dag constateerde mijn huisarts een forse burnout waar de klachten die ik had bijhoorden. Halverwege dit jaar mislukte de reïntegratie omdat mijn werkgever mij opnieuw onder druk zette wat een terugval in mijn herstel tot gevolg had. Er zijn ook geen inspanningen geweest waarin er goede randvoorwaarden zijn gesteld voor een adquate reïntegratie. Ik kan zien waarin ik zelf over mijn grenzen ga maar mijn werkgever wil niet kijken waarin hij dit doet. Ook deze keer schrijft de bedrijfsarts op dat de aanleiding van deze terugval te wijten is aan psychische klachten. Begin september meldde ik dat ik hersteld was en graag weer wilde reintegreren. Drie weken later kreeg ik te horen dat ik eerst mee moet werken aan een psychiatrisch onderzoek waarin vastgesteld moet worden aan welke psychische klachten ik lijd. Die zijn er net want buiten de burnout heb ik daar geen last van. Het rapport moet vervolgens vaststellen dat ik niet geschikt ben om mijn taken nog uit te voeren. Ik werk inmiddels tien jaar in deze functie. Het lijkt erop dat er vanaf het begin een start is gemaakt om grond te vinden voor mijn ontslag. Eerst worden er psychische klachten op papier gezet wat kennelijk nu grond moet geven voor dit onderzoek.
Moét ik hieraan meewerken en heb ik niet gewoon recht op terugkeer in mijn werk wanneer ik meld dat ik hersteld ben ?
U heeft ons een e-mail gestuurd over meewerken aan een psychiatrisch onderzoek bij een burn-out situatie. Als ik het goed begrijp heeft u zichzelf beter willen melden maar is deze betermelding niet geaccepteerd omdat men eerst inzicht wil hebben in wat uw beperkingen zijn en welke mogelijkheden u heeft om uw eigen werk of ander werk weer te gaan doen. Uzelf heeft het idee dat het rapport eerder moet dienen om er voor te zorgen dat u niet terug kan naar uw eigen werk. U wilt daarom weten of u niet gewoon in uw eigen werk weer mag gaan werken als u zelf zegt dat u hersteld bent.
Namens de Helpdesk geef ik u antwoord.
In dit geval wordt de betermelding niet zonder meer geaccepteerd. Dat is mogelijk omdat uiteindelijk de bedrijfsarts beslist of iemand weer in staat is om zijn eigen werk of passend werk te doen. In dit geval wil hij ook zekerheid krijgen door een psychiatrisch rapport op te stellen.
U heeft het recht om dit onderzoek te weigeren. De bedrijfsarts kan dan op het standpunt staan dat hij niet kan beoordelen of u kunt werken of niet en dat aan de werkgever doorgeven. In het uiterste geval kan de werkgever dit opvatten als niet meewerken aan re-integratie. En hij kan stoppen met loondoorbetaling.
In dit geval heeft u een keuze.
U kunt er voor kiezen het onderzoek te ondergaan en verder te gaan met de uitkomsten uit dat onderzoek (u heeft overigens altijd recht om als eerste de rapportage te lezen).
U kunt er ook voor kiezen om een second opinion aan te vragen bij het UWV over de vraag of u wel of niet kunt werken. Daarbij moet wel worden aangetekend dat het een advies van het UWV aan de werkgever is. Hij kan dit naast zich neer leggen en toch dit rapport willen afwachten. U kunt dan nog wel naar de rechter stappen maar de vraag is of u daarmee terugkeer kunt afdwingen.
Psychische Gezondheidslijn Voor al uw vragen over psychische problemen, voor informatie, advies of een luisterend oor kunt u terecht bij de Psychische Gezondheidslijn - Tel. : 0900 - 903 903 9 - (20 ct / min) Onze telefoonmedewerkers staan u graag te woord.
Hoe kan men een ziekte erkennen die men niet kan herkennen ?
Mensen vragen me wel eens naar mijn persoonlijk fibromyalgie-'verhaal'.
Het verschilt allicht niet veel van dat van jullie:
Ik heb al vele jaren fibromyalgie. De griep van 1989 triggerde mijn FM. Die griep was niet van de poes (ze werd toen zelfs erkend als epidemie) ! Toch ben ik blijven doorwerken (tot in juni 1995). Al die jaren heeft mijn huisarts me van de ene specialist naar de andere gestuurd, tot hij me (in 1995) ten einde raad de 'Pijnkliniek' in Pelleberg stuurde. Daar stelde Prof. B. Van Houdenhove al bij ons eerste kontakt de diagnose : fibromyalgie.
Het RIZIV heeft me een tijdje erkend als arbeidsonbekwaam, maar schrapte me uiteindelijk toch. Ik ben toen naar de Arbeidsrechtbank gestapt en die heeft me vlot méér dan 60 % invalide verklaard.
Ik had ook een privé-verzekering “gewaarborgd inkomen” lopen. Die verzekeringsmaatschappij heeft me meer dan 2 jaar stipt à 100 % vergoed, maar stopte dan plots, van de ene dag op de andere, met uitkeren. Het was toen eind november 1997... Die zaak heb ik ook voor de (burgerlijke) rechtbank gebracht, maar de juridische molen draait traag, héél traag : pas onlangs – 10 jaar later ! - heeft de rechtbank me in het ongelijk gesteld.
De gerechtelijke experten die me onderzocht hebben verklaarden me 100 % arbeidsongeschikt. In de polis staat echter dat 'psychische' aandoeningen en aandoeningen zonder 'objectieve bewijzen' uitgesloten zijn en de experten vonden dat ik mijn ziekte niet objectief kon bewijzen (ze zegden wél dat ze niet psychisch is).
Ik ben dus volledig arbeidsongeschikt maar ik kan zogezegd niet bewijzen dat ik ziek ben : men erkent de zieke, maar niet de ziekte...?!?!
Hoe kan men iemand wegens ziekte 100 % arbeidsongeschikt verklaren en dan volhouden dat er geen objectieve bewijzen zijn voor die ziekte die de arbeidsongeschiktheid veroorzaakt ?!?
De Rechtbank is meegegaan met de verzekeringsmaatschappij in de interpretatie van het begrip 'objectieve bewijzen', alhoewel men zich kan afvragen wat met 'objectief' bedoeld wordt en wat 'bewijzen' eigenlijk zijn. Waar is de rechtszekerheid als men in kontrakten vage termen mag gebruiken die nergens toegelicht worden ?
Ik ben natuurlijk zonder aarzelen in beroep gegaan en ik ben zinnens door te gaan, tot bij het Europese Hof voor de Rechten van de Mens – cfr. : http://www.echr.coe.int/echr/ - als het moet !
Laat ons de handen in elkaar slaan !
Ik neem me voor één of andere actie op het getouw te zetten om nu eens eindelijk de verzekeringsmaatschappijen te verplichten eerlijk te zijn.
Immers als ik in de polis lees 'aandoeningen zonder objectieve bewijzen zijn uitgesloten' dan lees ik dat als 'een ziekte veinzen is uitgesloten'.
Hier speelt men met voorbedachtheid met vage woorden en begrippen als vluchtweg om niet te hoeven uitkeren.
Lees zeker :
CVS - Objectieve bewijzen ? Wetenschap en Onderzoek bij het Chronisch Vermoeidheid Syndroom - Met zeer uitgebreide litaratuurlijst - Cfr. : www.jules.be - dd. 21-04-2006
En dan weten dat de ziekte sinds 1 april 2002 officiëel erkend is !
Met de bijkomende bedenking :
Hoe kan men een ziekte erkennen die men niet kan herkennen ? (er zijn immers geen objectieve bewijzen voor)
citeer ik hier Gezondheid NV - dd. 05-04-2002 (bijgewerkt op : 05-05-2004)
“Vanaf 1 april is het chronisch vermoeidheidssyndroom (CVS) door de RIZIV (Rijksdienst voor Ziekte-en Invaliditeitsverzekering) erkend als ziekte. Patiënten die aan CVS lijden, kunnen voortaan dus rekenen op de bijbehorende terugbetalingen en vergoedingen”.
In de praktijk is van die erkenning weinig of niks te merken...
Het Nederlandse Universitair Medisch Centrum Sint-Radboud – cfr. : www.umcn.nl/patient - publiceerde een tekst die zo eenvoudig, duidelijk en begrijpelijk is, dat het een goed idee leek er hier niets aan te veranderen.
Vermoeidheid als algemeen verschijnsel of bij ziekte
Moeheid is een klacht die zeer veel voorkomt. Iedereen is wel eens moe. Moeheid is zelfs voor de meesten van ons een dagelijkse ervaring. De volgende morgen of na rust is het gewoonlijk weer over. Bij sommige mensen blijft de vermoeidheid langere tijd aanwezig. Toch spreken we dan nog niet van chronische vermoeidheid. Bekend is dat zeker bij 80% van de mensen de ernstige vermoeidheid binnen enkele weken tot enkele maanden weer overgaat. Chronische vermoeidheid als klacht komt ook zeer vaak voor bij mensen met chronische ziekten. Chronische vermoeidheid kan bijvoorbeeld voorkomen bij patiënten met spierziekten, patiënten met chronische alvleesklierontsteking, patiënten met multipele sclerose, patiënten met hartziekten of patiënten met een te traag werkende schildklier. Chronische vermoeidheid komt ook regelmatig voor lang na een ernstige ziekte, bijvoorbeeld na een beroerte (herseninfarct, hersenbloeding) of soms nog lang na behandeling van kanker.
Wanneer spreken we van CVS ?
Bij een klein deel (minder dan 20%) kunnen de vermoeidheidsklachten langer dan zes maanden aanhouden. In dat geval kan sprake zijn van het chronisch vermoeidheidssyndroom (CVS). CVS is niet meer dan een naam voor ernstige vermoeidheidsklachten die niet aan een herkenbare ziekte kunnen worden toegeschreven (cfr. Boven).
Er is sprake van het chronisch vermoeidheidssyndroom als :
er ernstige aanhoudende of telkens terugkerende vermoeidheidsklachten aanwezig zijn die niet aanzienlijk verbeteren door rust en niet het gevolg zijn van voortdurende inspanning,
de vermoeidheid heeft geleid tot forse afname van vroegere niveaus van beroepsmatig, sociaal en/of persoonlijk functioneren,
voor deze klachten geen lichamelijk verklaring te vinden is,
de klachten tenminste zes maanden bestaan.
Naast de vermoeidheid kunnen één of meer van de volgende verschijnselen aanwezig zijn : beperking in het korte termijngeheugen of concentratieproblemen, zere keel, gevoelige hals- of okselklieren, spierpijn, gewrichtspijn, hoofdpijn, slaapklachten, malaise klachten na inspanning die langer dan 24 uur duren, maag - of darmklachten, duizeligheid, slaapklachten , spierzwakte, prikkelbaarheid, spraakstoornissen of extreem transpireren. Maar ook andere niet genoemde klachten kunnen voorkomen.
ME of CVS ?
ME (myalgische encephalomyelitis) is de naam die patiënten en patiëntenverenigingen hanteren. Wetenschappers zijn niet gelukkig met deze naam omdat deze naam duidt op een ontsteking van het zenuwweefsel waarvoor geen aanwijzingen zijn gevonden. Zij gebruiken de term 'Chronisch vermoeidheidssyndroom' ('CVS'). Ook de ME-CVS Stichting spreekt over 'ME/CVS'.
Door het wetenschappelijk onderzoek naar diverse aspecten van CVS hebben wij meer inzicht gekregen in het ontstaan van CVS. Op het moment dat CVS vastgesteld wordt, is er geen lichamelijke verklaring voor de klachten meer te vinden. Wel gaan we er van uit dat er een lichamelijk beginpunt kan zijn (bijv. een infectie, een operatie, een bevalling ). Soms ook kunnen de klachten begonnen zijn na een belangrijke gebeurtenis in iemands leven (bijvoorbeeld overlijden van een naaste, verhuizing, een andere baan,). Als de klachten lang bestaan is vaak niet meer te achterhalen waarmee de klachten begonnen zijn. In de loop van de tijd zijn er andere factoren ontstaan die de huidige klachten instandhouden. Een behandeling is meestal gericht op deze instandhoudende factoren.
Invloed van klachten op het dagelijks leven
CVS patiënten ondervinden ernstige gevolgen van hun klachten op het dagelijks leven :
na een lange nachtrust voelen veel patiënten zich bij het opstaan niet uitgerust.
de meeste patiënten zijn veel minder actief dan zij voor het ontstaan van de klachten waren.
de dagelijkse zelfzorg kan men meestal nog, zij het met moeite, zelfstandig uitvoeren.
gevolgen voor werk : CVS patiënten zijn vaak geheel of gedeeltelijk in de ziektewet of de WAO.
de sociale contacten van patiënten lopen ten gevolge van de klachten sterk terug.
de ernstige lichamelijke klachten en de toegenomen beperkingen in het dagelijks leven kunnen er bij sommige patiënten toe leiden dat zij zich lusteloos, somber en machteloos voelen.
Hoe vaak komt het voor ?
Recent onderzoek naar het voorkomen van CVS in de huisartsenpraktijk laat zien dat er tenminste 27.000 CVS patiënten in Nederland zijn (in België schat men het aantal op 30.000).
Vergeleken met een aantal jaren geleden weten huisartsen nu meer van CVS, herkennen zij CVS vaker bij hun patiënten en achten zich vaker in staat de diagnose CVS te stellen. Toch is er op dit punt zeker nog verbetering mogelijk.
CVS komt vaker bij vrouwen dan bij mannen voor. Hooguit een kwart van de patiënten is mannelijk. Ook bij jongeren vanaf 10 jaar wordt de diagnose CVS gesteld.
legde Yoke Boon bewust nog schroom aan de dag : een terughoudendheid vooral ten opzichte van de zorgverstrekkers. Laten we maar zeggen dat er een bewuste vorm van zelfcensuur werd beoefend om artsen en therapeuten uit de wind te zetten, ook al was Yoke het niet altijd eens met hun manier van werken of omgaan met patiënten.
En er was meer... Het boek moest een hoopgevende boodschap bevatten. Anno 2004 leek nog veel mogelijk. Op alle gebied.
Vandaag, vier jaar later, is de toon anders. Scherper. Soms cynisch. Yoke voelde geen fysieke verbetering. Integendeel.
In dit tweede boek - ' Onbewoonbaar verklaard ' - houdt ze er rekening mee dat het misschien, wellicht, haar laatste boek zal zijn. Voor zelfcensuur is er geen plaats meer. Als Yoke zin heeft om iets over de zorgverstrekking te vertellen dat kwetsend kan zijn, dan doet ze het. Waarom ook niet ?
Op die manier sloopt ze her en der wat heilige huisjes. En dat klinkt niet altijd even fraai, want woede klinkt door. Maar woede is een eerlijk gevoel. Eerlijker dan diplomatische terughoudendheid.
In ' Onbewoonbaar verklaard ' verzamelde Yoke Boon de notities die ze gedurende het jaar 2007 belangrijk vond.
De lezer volgt haar van dag tot dag gedurende haar strijd - niet tegen de ziekte - maar om te overleven. Daarbij wordt geen enkel taboe als hindernis opgeworpen.
Yoke Boon schrijft in dit dagboek alles van zich af : euthanasie, zelfdoding, de (lichamelijke) relatie tussen partners, het gebruik van cannabis, verwerping van goedbedoelde uitspraken en meningen van anderen, behandelingsmethoden, de kwaliteit van het sociale vangnet voor mindervaliden... alles wordt aan de kaak gesteld.
Geen censuur, geen franje, enkel de harde waarheid.
Het boek verschijnt dit jaar in de lente
Onbewoonbaar verklaard wordt op dit ogenblik (februari 2008) geredigeerd en gelayout door uitgeverij Aqua Fortis .
Het boek verschijnt dit jaar in de lente en zal verspreid worden door de WorldWide Association of Writers ( WWAOW ).
Derhalve zal het boek niet in de boekhandel verkrijgbaar zijn, maar uitsluitend worden aangeboden op de website van WWAOW, zodat het een internationale verspreiding zal kennen.
U kan het boek op dit ogenblik nog niet bestellen, maar u kunt wel al een mailtje zenden naar uitgeverij Aqua Fortis, zodat u automatisch verwittigd wordt wanneer het boek verschijnt.
Ook aan de zijde van de administratie is niet altijd duidelijkheid troef. Alhoewel men het aantal door CVS getroffen mensen in België op 30.000 schat, geven de cijfers van het Riziv (Rijksinstituut voor Ziekte- en Invaliditeitsverzekering) duidelijk aan hoe moeilijk het is als CVS-patiënt erkend te worden. De tekst hieronder komt uit de “Vragen en antwoorden” van de Belgische senaat.
BELGISCHE SENAAT Vragen en Antwoorden Vragen van de Senatoren en antwoorden van de Ministers Bulletin 3-80 - Zitting 2006-2007 (Art. 70 van het reglement van de Senaat)
Minister van Sociale Zaken en Volksgezondheid
Vraag nr. 3-6310 van mevrouw Thijs d.d. 24 november 2006 (N.) : Myalgische encephalomyelitis (ME) - Chronische vermoeidheidssyndroom (CVS) – Terugbetalingsregels
Het chronische vermoeidheidssyndroom werd in 1969 officieel erkend door het WHO. In België wordt meestal gesproken over 'Myalgische Encephalomyelitis' ('ME'). In afwachting van een betere beschrijving van de ziekte, verdient de neutrale benaming 'chronisch vermoeidheidssyndroom' ('CVS') de voorkeur.
Één van de meest typische symptomen van CVS is een alles overheersende vermoeidheid die de activiteit- en arbeidscapaciteiten van de patiënten reduceren tot een minimaal niveau. De chronische vermoeidheid is gedurende 6 maanden of meer opeenvolgende maanden aanhoudend of steeds terugkerend aanwezig is, in combinatie met meerdere andere symptomen ondermeer koorts, hoofdpijn, spierpijn, gewrichtspijn, keelpijn, pijnlijke lymfeklieren, slapeloosheid, concentratie- en geheugenproblemen.
Het vinden van een efficiënte behandelingswijze is zeer complex : volledige genezing is een utopie, vermindering van de klachten kan wel maar de juiste therapie verschilt bij iedereen. Vele patiënten raken sociaal geïsoleerd want door de alles overheersende vermoeidheid en pijnen is deelname, zelfs aan het basale sociale gebeuren, een zware en vaak onhaalbare opdracht. Hierdoor zien we ook dat vele patiënten in een depressieve toestand verglijden.
Ondanks de erkenning als neurologische aandoening door het WHO, blijft er in België en vele andere landen sprake van een negativistische en ontkennende houding ten aanzien van deze aandoening.
In 2002 werd CVS bovendien door het RIZIV erkend als een ziekte. De behandeling en differentiële diagnose moet gesteld worden in één van de vijf officieel erkende Vlaamse CVS-referentiecentra (UZ Leuven, UZ Antwerpen, UZ Gent, referentiecentrum UCL en referentiecentrum AZ — VUB).
De patiënt dient zich in eerste instantie aan te melden bij de reguliere huisarts die hen vervolgens via een standaardverwijsformulier doorverwijst. Zoals reeds vermeld is het diagnosticeren van CVS geen sinecure. In België wordt gekozen voor de criteria van het WHO.
De behandeling in de centra is vooral gebaseerd op de cognitieve gedragstherapie en fysische revalidatie. Dit komt eigenlijk neer op een psychiatrische behandeling en heeft een stigmatiserend effect heeft voor de betrokkenen. De diagnoses in de door het RIZIV erkende centra, worden echter niet in rekening gebracht bij het vaststellen van de invaliditeitsgraad op het ogenblik van evaluatie bij het RIZIV.
Graag ontving ik een antwoord op de volgende vragen :
Het RIZIV vergoedt de officiële centra voor het diagnosticeren en opstellen van een behandelplan. Wanneer een diagnose wordt gesteld door deze artsen, lijkt het logisch dat deze diagnose ook erkend wordt door het RIZIV bij het vaststellen van de invaliditeitsgraad. Gaat de geachte minister ermee akkoord dat het duidelijk is dat de functionele mogelijkheden van CVS patiënten zwaar gehypothekeerd worden, zoals blijkt uit de officieel gehanteerde diagnosecriteria en dat dit een ernstige reductie van de arbeidsgeschiktheid inhoudt ? Waarom wordt de vaststelling van het referentiecentrum niet in alle gevallen in acht genomen door het RIZIV ? Zal in de toekomst het oordeel van het team van het referentiecentrum steeds gevolgd worden ? Indien ja, worden er dan ook controlemechanismen ingebouwd bijvoorbeeld de patiënten moeten zich jaarlijks opnieuw laten onderzoeken in het centrum en deze resultaten worden aan het evaluatiedossier van het RIZIV gekoppeld ?
Hoe hoog is de discriminerende waarde van de gestelde diagnose aan de hand van de criteria van het WHO ?
Hoeveel officieel erkende CVS patiënten zijn er momenteel ? Wat zijn de minima en maxima invaliditeitsgraden die aan deze patiënten werden toegekend ? Hoeveel patiënten krijgen een uitkering en wat is dan de totale kost voor het RIZIV ?
Het feit dat het RIZIV de ziekte erkent, kan bezwaarlijk een slechte zaak genoemd worden. Hun erkenning van CVS als zijnde een psychische aandoening brengt echter een praktisch en weerom financiële belemmering met zich mee. De meeste polissen inzake hospitalisatieverzekering of bijkomende invaliditeitsverzekering sluiten psychische aandoeningen uit. Is er een mogelijkheid om CVS — gelet op het feit dat de oorzaak tot op heden niet teruggevoerd kan worden tot een zuiver psychopathologische oorzaak — onder te brengen in de categorie « ongedefinieerde oorzaken » ?
U stelt een aantal vragen omtrent de toekenning van arbeidsongeschiktheidsuitkeringen aan patiënten met het chronisch vermoeidheidssyndroom.
Twee situaties dienen onderscheiden te worden.
a) Wanneer een gerechtigde met diagnose 'chronisch vermoeidheidssyndroom' een revalidatieprogramma volgt in een CVS-referentiecentrum, wordt die persoon geacht de vereiste graad van arbeidsongeschiktheid te behouden. Die persoon kan dan aanspraak maken op uitkeringen wanneer de betrokkene voldoet aan de andere verzekerbaarheidsvoorwaarden.
b) Wanneer een gerechtigde met de CVS-diagnose geen erkend revalidatieprogramma volgt, maar meent dat hij ingevolge zijn aandoening, arbeidsongeschikt beschouwd moet worden, dient hij deze arbeidsongeschiktheid aan te geven bij de adviserend geneesheer van het ziekenfonds. De adviserend geneesheer kan tijdens het eerste jaar een primaire ongeschiktheid vaststellen. Vanaf het tweede jaar is de Geneeskundige Raad voor invaliditeit (GRI) van de Dienst voor uitkeringen bevoegd. Bij de evaluatie van de arbeidsongeschiktheid wordt rekening gehouden met elk letsel of functionele aandoening, dus ook met het CVS-syndroom. Om arbeidsongeschikt erkend te kunnen worden is wel ten minste 66 % arbeidsongeschiktheid vereist. In het kader van de arbeidsongeschiktheidsverzekering gaat het dus niet om de 'erkenning van bepaalde ziekten', maar wél om de evaluatie van de weerslag van letsels of functionele stoornissen op het verdienvermogen van de betrokkene. Uit het RIZIV-rapport dat recent gepubliceerd is over de CVS-referentiecentra blijkt dat 24 % van de patiënten waarbij de centra de CVS-diagnose hebben vastgesteld, deeltijds of voltijds betaald werkt en dus niet voldoen aan de 66 % regel. U kan het RIZIV-rapport op de website raadplegen.
De criteria van de Wereldgezondheidsorganisatie waarnaar u in uw tweede vraag verwijst, zijn mij niet bekend. De definitie die de CVS-referentiecentra hanteren en die algemeen aanvaard wordt, is de definitie van Fukuda (1994) die gehanteerd wordt door de Centers for Disease Control. Dit is een beschrijvende definitie welke geen beoordeling inhoudt over een oorzakelijke factor van de klachten, omdat die niet gekend is. Een schatting van de discriminerende waarde van de diagnosestelling op basis van de beschrijvende definitie is volgens mij niet mogelijk.
Wat de vraag naar het aantal officieel erkende CVS-patiënten betreft, veronderstel ik dat hier het aantal patiënten bedoeld wordt waarvoor de referentiecentra de CVS-diagnose hebben vastgesteld. Op 30 juni 2005 waren dat er 1.106 zoals blijkt uit het rapport van het RIZIV. U vraagt ook enkele statistische gegevens, specifiek over de groep van patiënten met CVS die arbeidsongeschiktheidsuitkeringen krijgen. De Dienst voor uitkeringen beschikt over geen gegevens voor de gerechtigden in primaire ongeschiktheid. De Dienst beschikt evenmin over precieze gegevens wat het aantal invalide gerechtigden betreft. De Dienst uitkeringen van het RIZIV neemt zich voor een nieuw classificatiesysteem in te voeren (ICD-10 in de plaats van ICD-9), waardoor deze Dienst in de toekomst voor de invalide gerechtigden wel over meer precieze gegevens zou kunnen beschikken.
Ten slotte meent u dat het RIZIV het chronisch vermoeidheidssyndroom zou beschouwen als een psychische aandoening. Volgens mij is dit niet correct. Het RIZIV neemt over de oorzaak van CVS geen standpunt in, omdat daar geen consensus over bestaat. Dat staat ook letterlijk zo in de overeenkomst tussen het RIZIV en de referentiecentra. Het concept van de referentiecentra is multidisciplinair. De teams van de centra bestaan ook uit internisten en fysische geneesheren. De behandelingswijze van de centra, die gebaseerd is op cognitieve gedragstherapie en progressieve fysieke revalidatie; kan ook bezwaarlijk bestempeld worden als een psychiatrische behandelingswijze.
“Just about everybody knows that the name ‘chronic fatigue syndrome’ trivializes the seriousness of the disease. It is a bad name that has lasted too long and robbed us of our dignity, inch by inch, one day at a time. The name makes light of our suffering and is hurtful to patients everywhere. One of our readers who has a way with words said that calling the disease chronic fatigue syndrome is like calling Parkinson’s disease “chronic shakiness syndrome” or calling Alzheimer’s disease ‘chronic forgetfulness disease’! I could not have said it better.
The Name Change Advisory Board, composed of eight of the most highly regarded ME/CFS experts in the world, was formed and met in January 2007 to come up with a recommendation for a new name.
- Rich Carson -
“A perfect name isn’t necessary but a respectable name is essential A medical-sounding name like 'myalgic encephalopathy' or 'myalgic encephalomyelitis' has a better chance of being taken seriously than 'chronic fatigue syndrome', which just sounds like you’re tired”.
- Karen Lee Richards -
“The choice is yours The recommendation has been made and in the next few months we are moving to the next exciting phase : your vote !”
Especially when speaking of an illness that affects millions of people across the globe. Thus a group of world-renowned scientists, advocates, patients and celebrities are 'fighting the good fight' to create a more equitable, realistic name for what the Centers for Disease Control and Prevention (CDC) – cfr. : http://www.cdc.gov/ - years ago termed 'Chronic Fatigue Syndrome'. Learn more about this important work and the upcoming vote by CFS patients right here (cfr. : 'Compaign for a fair name' at : http://www.afairname.org/cause.cfm -) and find out how you can help the Campaign for a Fair Name.
The naming of chronic fatigue syndrome has been challenging, since consensus is lacking within the medical, research and patient communities regarding the defining features of the syndrome. It may be considered by different authorities to be a central nervous system, metabolic, (post-)infectious, immune system or neuropsychiatric disorder.
There are a number of different terms which have been identified at various times with this disorder :
Myalgic encephalomyelitis Myalgic encephalomyelitis or ME translates to "inflammation of the brain and spinal cord with muscle pain" and first appeared as "benign myalgic encephalomyelitis" in a Lancet editorial by Sir Donald Acheson in 1956. (1) In a 1959 review he referred to several older reports that appeared to describe a similar syndrome. (2) The neurologist Lord Brain included ME in the 1962 sixth edition of his textbook of neurology. (3) A 1978 British Medical Journal article stated the Royal Society of Medicine conference to discuss the illness during that year clearly agreed Myalgic Encephalomyelitis was a distinct name for the disease. The article also stated the previous word (benign) used with ME was rejected as unsatisfactory and misleading because the condition may be devastating to the patient. (4) In 1988 both the UK Department of Health and Social Services and the British Medical Association officially recognized it as a legitimate and potentially distressing disorder. Opponents of the term ME state that there is no objective evidence of inflammation. In some patients diagnosed with CFS (e.g. the case of Sophia Mirza), central nervous system inflammation has been documented. Many patients and some research and medical professionals in the United Kingdom and Canada, use this term in preference to or in conjunction with CFS (ME/CFS or CFS/ME). The international association of researchers and clinicians is named IACFS/ME.
Myalgic encephalopathy Myalgic encephalopathy, similar to the above, with "pathy" referring to unspecified pathology rather than inflammation; this term has some support in the UK and US.
Chronic Epstein-Barr virus (CEBV) or Chronic Mononucleosis The term CEBV was introduced in 1985 by virologists Dr. Stephen Straus (5) and Dr. Jim Jones (6) in the United States. The Epstein-Barr virus, a neurotropic virus that more commonly causes infectious mononucleosis, was thought by Straus and Jones to be the cause of CFS. Subsequent discovery of the closely related human herpesvirus 6 shifted the direction of biomedical studies, although a vastly expanded and substantial body of published research continues to show active viral infection or reinfection of CFS patients by these two viruses. These viruses are also found in healthy controls, lying dormant.
Chronic fatigue syndrome (CFS) Chronic fatigue syndrome (CFS) was proposed in 1988 by researchers from the U.S.Centers for Disease Control and Prevention (CDC) to replace the name chronic Epstein-Barr virus syndrome when they published an initial case definition for research of the illness after investigating the 1984 Lake Tahoe ME epidemic. (7) CFS is used increasingly over other designations, particularly in the United States. Many patients and clinicians perceive the term as trivializing (8) and as the 1994 Fukuda paper itself cedes, stigmatizing, which led to a movement in the United States to change the name and definition. (9) Eighty-five percent of respondents to a 1997 survey conducted by the Chronic Fatigue Immune Dysfunction Syndrome Association of America wanted the name changed. (8) The CFS Coordinating Committee (CFSCC) of the U.S. Department of Health and Human Services formed a name change workgroup in 2000.(10) Terms were recommended which implied specific underlying etiologies or pathologic processes, but work was shelved in December 2003 when the successor CFS Advisory Committee (CFSAC) decided a name change would be too disruptive at that time. (11)
Chronic fatigue immune dysfunction syndrome (CFIDS) Many patients and advocacy groups in the USA use the term CFIDS, in an attempt to reduce the psychiatric stigma attached to "chronic fatigue," as well as the public perception of CFS as a psychiatric syndrome. The term also calls attention to the immune dysfunction in patients which research suggests is an integral part of the illness. (12) (13)
Post-viral fatigue syndrome (PVFS) VFS is a related disorder. According to ME researcher, Dr. Melvin Ramsay : "The crucial differentiation between ME and other forms of post-viral fatigue syndrome lies in the striking variability of the symptoms not only in the course of a day but often within the hour”. (14)
Low Natural Killer Syndrome (LNKS) This term reflected research on patients showing diminished in-vitro natural killer cell activity in a small 1987 study in Japan. (15) (16) A case definition for CFS in Japan (17) was adopted in 1991 based on the CDC 1988 criteria, an updated diagnostic guideline is planned. (18)
Yuppie Flu 'Yuppie Flu' was a factually inaccurate term first published in a November 1990 Newsweek cover story and never official medical terminology. It reflects a stereotypical assumption that CFS mainly affects the affluent ("yuppies") and implies that it is a form of burnout. (19) CFS, however, affects people of all races, genders and social standings (20) and is not a form of flu. The phrase is considered offensive by patients and clinicians. (21) (22) (23)
Uncommonly used terms Uncommonly used terms include Akureyri Disease, Iceland disease (in Iceland) (24) Royal Free disease (after the location of an outbreak) (25) atypical poliomyelitis (26) epidemic neuromyasthenia, epidemic vasculitis, raphe nucleus encephalopathy and Tapanui flu (after the New Zealand town Tapanui where the first doctor in the country to investigate the disease, Dr Peter Snow, lived).
The clinical syndrome variously called benign myalgic encephalomyelitis, Iceland disease and epidemic neuromyasthenia Ernest Donald Acheson - 959 Apr;26(4):569-95 - PMID: 13637100 The autor Sir (Ernest) Donald Acheson, KBE 1986, has just retired after holding the post of Chief Medical Officer, Departments of Health and Social Security for Great Britain. It is of notable interest that this principal early M.E./CFS researcher had risen to become the chief Medical Officer for Great Britain. Dr. Donald Henderson, one of the early American M.E./CFS pioneers whose work is also in this book, went on to become Dean of Medicine of Johns Hopkins and is presently the White House Chief of Science for the U.S.A. After Sir Donald Acheson graduated from Oxford in 1946 he held numerous senior positions, including Professor of Clinical Epidemiology, University of Southampton, Chairman of Slow Virus Group, Visiting Professor, McMaster University, Canada 1977. He has also held numerous important posts in many universities in the United Kingdom and New Zealand (the information about Sir Atheson was obtained from the British Who’s Who 1992,Collier Mcmillian Press, Cambridge, Ontario) Recent technical advances have added greatly to the ease with which virological methods may be applied to the study of poliomyelitis and allied infection of the central nervous system. These techniques have already borne abundant fruit in the development of a vaccine against poliomyelitis. The accurate appraisal of the preventive value of such a vaccine will depend on our ability to diagnose poliomyelitis accurately. It had long been believed that the clinical features of acute paralytic poliomyelitis were sufficiently characteristic for a confident diagnosis to be made on clinical grounds alone. This confidence has recently been shaken by the finding that the virus of louping-ill (Russian spring–summer encephalomyelitis) may produce a similar clinical picture, even in the United Kingdom. There is also suggestive but incomplete evidence that Coxsackie B, Echo and other viruses may occasionally cause acute flaccid paralysis. The position of a “non-paralytic” poliomyelitis is even less secure4 and the diagnosis can no longer be established on clinical grounds alone. The purpose of this article is to review a number of obscure outbreaks of paralytic illness, the majority of which were at first confused with poliomyelitis but which were later differentiated on clinical and epidemiologic grounds. Although investigations have been restricted by the fact that no deaths have occurred, the most careful virologic studies have failed to incriminate the polio virus, the Coxsackie or Echo groups of organisms or any other known neurotrophic agent. The outbreaks will be compared and the basis for the view that they constitute a clinical entity will be discussed. Such information as is available about the etiology, prognosis and treatment will be reviewed. .../... Summary and Conclusions Fourteen outbreaks of a paralytic illness of worldwide distribution are described. Twelve of these have so many epidemiologic and clinical features in common that there is a prima facie case for a single or related group of causative agents. The epidemiologic features are a high attack rate as compared with poliomyelitis, a predilection for residential communities, a higher attack rate in women than in men, a tendency to occur more commonly in young adults and the commencement of most outbreaks in the summer months. The evidence is consistent with the hypothesis that the disorder is an infection which is spread by personal contact. The fact that hospital staffs, particularly nurses, have borne the brunt of seven outbreaks suggests an occupational hazard. An alternative explanation is that the unusual nature of the illness has been noted in such persons because of a higher standard of diagnostic skill at their disposal than is available to the members of other residential communities. Severely affected patients show a characteristic clinical picture. After an acute or subacute onset with headache, symptoms of a gastrointestinal or upper respiratory upset, muscular pains and low or absent fever, an unusual type of paresis develops which is rarely associated with the classic signs of lower motor neurone or pyramidal tract involvement. This is often accompanied by parenthesias, sometimes by sensory loss and occasionally by painful muscular spasms, myoclonus or other types of involuntary movement. As the paresis recovers a curious jerky muscular contraction on volition has been noted in some instances. Involvement of the cranial nerves and the bladder may occur. Convalescence has been prolonged by fatigue and recurring myalgia but recovery has usually been complete within three months. In a proportion which varies from outbreak to outbreak a well defined state of chronic ill health has developed, characterized by fluctuating myalgia and paresis, partial remissions and exacerbations and depression, emotional lability and lack of concentration. The major differences within the group of outbreaks lie in the incidence of lymphadenopathy, paresis and mild lymphocytosis in the cerebrospinal fluid. Clinical laboratory studies have on the whole proved unhelpful. With the exception of two outbreaks in which a mild lymphocytosis was found, the cerebrospinal fluid has been normal in 95 per cent of cases investigated. An unusual electromyogram has been found in two outbreaks and in some sporadic cases. No deaths directly attributable to the disease have occurred and the pathology remains unknown. In spite of the sidest investigations, no known bacterial or viral pathogen has been incriminated. In particular, there is no evidence that the poliomyelitis Coxsackie or Echo groups of viruses have been responsible. Evidence is adduced to show that the outbreaks can be distinguished on clinical grounds from poliomyelitis, encephalitis lethargica, the arthropod-borne encephalitides, epidemic myalgia and infectious mononucleosis. The disorder is not a manifestation of mass hysteria. Cfr. : http://www.meresearch.org.uk/information/keypubs/Acheson_AmJMed.pdf
Brain's diseases of the nervous system - 11th edition Michael Donaghy (2001) – Oxford : Oxford University Press – ISBN : 0192626183 - Review by J. van Gijn, Department of Neurology, University Medical Centre, Utrecht, The Netherlands The sixth edition of 'Brain’s Diseases of the Nervous System' (1962) was the first and only textbook of neurology I ever used more or less regularly, between the decision to choose neurology as a speciality and the actual beginning of my training period. The senior neurologists I subsequently came across quickly introduced me to monographs on subdisciplines such as neuromuscular disease or neuro-ophthalmology and to medical journals. Therefore the strategy my colleagues and I soon developed if faced with a difficult problem in patient care (research is another story), was to turn to one’s private collection of cherished and well-thumbed books or sometimes to an appropriate review article. For reasons that I cannot recall I later nevertheless acquired John Walton’s ninth edition (1985), but it was only rarely consulted and with little success. Hence the pristine condition of that dark blue tome on top of my bookcase (it may well have been the first in the series that was too high to fit on an average shelf). This waning attachment to single-volume textbooks equally applied to the American counterparts into which I sometimes looked—the main problem was the obsolescence of the omniscient neurologist rather than the shortcomings of a particular author. The only textbooks I bought since then were old or very old. Personal compendia written by Pratensis, Boerhaave, Romberg, Dejerine, Gowers and others are perfectly suited to give historians of neurology an informal view of the state of neurology at a given time and place, without the hedging style that so often characterizes original publications. The invitation to review Michael Donaghy’s eleventh edition was a welcome opportunity to renew my acquaintance with this emblem of British neurology .../... In summary, the main text of the book on the whole admirably fulfils its purpose of guiding the neurologist in training to a variety of clinical features, disease conditions and therapeutic principles, usual and unusual. The new ‘Brain’ is still a monument—a fortress—of British neurology, beautifully restored. The occasional room needs rebuilding, but the main trouble is getting in. Cfr. : http://brain.oxfordjournals.org/cgi/content/full/125/10/2370-a Cfr. Also : - http://www.ovid.com/site/catalog/Book/1756.jsp?top=2&mid=3&bottom=7&subsection=11 - http://www.nature.com/sc/journal/v40/n1/full/3101240a.html
Persisting illness and fatigue in adults with evidence of Epstein-Barr virus infection Straus SE, Tosato G, Armstrong G, Lawley T, Preble OT, Henle W, Davey R, Pearson G, Epstein J, Brus I, et al. - Ann Intern Med. 1985 Jan;102(1):7-16 - PMID: 2578268 Clinical, serologic, virologic and immunologic evaluations for 31 adults with chronic illness and fatigue suggested that 23 had persisting Epstein-Barr virus infection. Among these 23 patients, cellular immune mechanisms were generally normal, but 4 had mild immunoglobulin deficiencies. However, 20 patients had abnormal serologic profiles specific for Epstein-Barr virus shown by significantly elevated titers of antibodies to the viral capsid antigen or early antigen or by a deficiency of late-appearing antibodies. In 11 of 15 patients tested, circulating immune complexes were found. Circulating interferon was not found in 18 patients tested, but the activity of 2-5 oligoadenylate synthetase, an interferon-induced enzyme, was increased in 5 patients studied. Of 19 patients, 18 had persisting suppressor T-cell activity typically found in patients recovering from acute infectious mononucleosis. We believe that the Epstein-Barr virus may be associated with chronic illness in adults. Cfr. : http://www.ncbi.nlm.nih.gov/pubmed/2578268
Evidence for active Epstein-Barr virus infection in patients with persistent, unexplained illnesses - Elevated anti-early antigen antibodies Jones JF, Ray CG, Minnich LL, Hicks MJ, Kibler R, Lucas DO - Ann Intern Med. 1985 Jan;102(1):1-7 - PMID: 2578266 Forty-four patients, including 26 adults and 18 children under 15 years of age, were referred for evaluation of recurrent or persistent illnesses, with symptoms including pharyngitis, lymphadenopathy, fever, headaches, arthralgia, fatigue, depression, dyslogia and myalgia. Thirty-nine patients were positive for Epstein-Barr virus antibody with antibody levels compatible with active infection for at least 1 year. Antiviral capsid antigen and anti-early antigen titers of patients were significantly greater (p less than 0.001) than age-group-matched controls. The frequency, number, duration and patterns of symptoms, as well as patient sex, were compared by age in study patients seropositive and seronegative for Epstein-Barr virus. Illness patterns were not associated with changes in specific antibody titers or clinical findings. Lymphocyte phenotype and function analyses were done in 11 of the 39 patients positive for Epstein-Barr virus antibody; no consistent differences from normal were found. Only 1 of 32 patients had circulating interferon, in contrast to 7 of 7 patients with acute infectious mononucleosis. There were many adverse consequences of the illness. Epstein-Barr virus infection may not be self-limiting and the virus may be associated with clinically recognizable illness other than infectious mononucleosis in children as well as in adults. Cfr. : http://www.ncbi.nlm.nih.gov/pubmed/2578266
Chronic fatigue syndrome - A working case definition Holmes GP, Kaplan JE, Gantz NM, Komaroff AL, Schonberger LB, Straus SE, Jones JF, Dubois RE, Cunningham-Rundles C, Pahwa S, et al., Division of Viral Diseases, Centers for Disease Control, Atlanta, Georgia - Ann Intern Med. 1988 Mar;108(3):387-9 - PMID: 2829679 The chronic Epstein-Barr virus syndrome is a poorly defined symptom complex characterized primarily by chronic or recurrent debilitating fatigue and various combinations of other symptoms, including sore throat, lymph node pain and tenderness, headache, myalgia and arthralgias. Although the syndrome has received recent attention, and has been diagnosed in many patients, the chronic Epstein-Barr virus syndrome has not been defined consistently. Despite the name of the syndrome, both the diagnostic value of Epstein-Barr virus serologic tests and the proposed causal relationship between Epstein-Barr virus infection and patients who have been diagnosed with the chronic Epstein-Barr virus syndrome remain doubtful. We propose a new name for the chronic Epstein-Barr virus syndrome--the chronic fatigue syndrome--that more accurately describes this symptom complex as a syndrome of unknown cause characterized primarily by chronic fatigue. We also present a working definition for the chronic fatigue syndrome designed to improve the comparability and reproducibility of clinical research and epidemiologic studies and to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause. Cfr. : http://www.ncbi.nlm.nih.gov/pubmed/2829679
Measuring attributions about chronic fatigue syndrome Leonard A. Jason, PhD; Renée R. Taylor, PhD, Department of Psychology, DePaul University - Address correspondence to : Leonard A. Jason, PhD, Department of Psychology, DePaul University, 2219 North Kenmore, Chicago, IL 60614 - J of Chronic Fatigue Syndrome, Vol. 8, Numbers 3/4, 2001, pp. 31-40 - Financial support for this study was provided by NIAID grant number AI36295 Three studies explored the effects of different diagnostic labels and different types of recommended treatments for Chronic Fatigue Syndrome upon attributions regarding its cause, nature, severity, contagion, prognosis and treatment. Attributions for Chronic Fatigue Syndrome appear to change based upon the diagnostic label given for the syndrome and the type of treatment recommended. Results suggest that, in comparison to the 'Chronic Fatigue Syndrome' label, the 'Myalgic Encephalopathy' label prompts attributions that this syndrome is a serious condition associated with a physiologically-based etiology, a poor prognosis and decreased potential for organ donation. Results also suggest that, compared with cognitive coping skills treatment, treatment with ampligen appears to be associated with perceptions of Chronic Fatigue Syndrome as an accurate diagnosis and as a severely disabling condition. Cfr. : http://www.cfids-cab.org/cfs-inform/Welcome/jason.taylor01.txt
Name Change The CFIDS Association of America, 2008-01-16 The name "chronic fatigue syndrome" is problematic, misleading and does not adequately describe the serious and complex nature of the illness or the severe impact it has on a person’s life. Cfr. : http://www.cfids.org/advocacy/name-change.asp
Carol Lavrich, Chair of the Name Change Workgroup, CFSCC Name Change Workgroup, CFSCC, National Institutes of Health Building 31C, Conference Room 10, Bethesda, Maryland : US Department of Health and Human Services, Chronic Fatigue Syndrome Advisory Committee - September 29 2003 Cfr. : http://www.hhs.gov/advcomcfs/sept_meeting_min.html#carollavrich
Name Change Bell D.S. et al (December 03 2003) - Hubert H. Humphrey Building, 200 Independence Avenue, SW, Room 800, Washington, DC 20201 : US Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee (CFSAC) Second Meeting Cfr. : http://www.hhs.gov/advcomcfs/dec_meeting_min.html#name_change
A chronic illness characterized by fatigue, neurologic and immunologic disorders and active human herpesvirus type 6 infection Buchwald D, Cheney PR, Peterson DL, Henry B, Wormsley SB, Geiger A, Ablashi DV, Salahuddin SZ, Saxinger C, Biddle R et al., Department of Medicine, Brigham and Women's Hospital, Boston, MA 02115 - Ann Intern Med. 1992 Jan 15;116(2):103-13 – PMID : 1309285 Objective - To conduct neurologic, immunologic and virologic studies in patients with a chronic debilitating illness of acute onset. Design - Cohort study with comparison to matched, healthy control subjects. Patients - We studied 259 patients who sought care in one medical practice; 29% of the patients were regularly bedridden or shut-in. Main outcome measures - Detailed medical history, physical examination, conventional hematologic and chemistry testing, magnetic resonance imaging (MRI) studies, lymphocyte phenotyping studies and assays for active infection of patients' lymphocytes with human herpesvirus type 6 (HHV-6). Main results - Patients had a higher mean (+/- SD) CD4/CD8 T-cell ratio than matched healthy controls (3.16 +/- 1.5 compared with 2.3 +/- 1.0, respectively; P less than 0.003). Magnetic resonance scans of the brain showed punctate, subcortical areas of high signal intensity consistent with edema or demyelination in 78% of patients (95% CI, 72% to 86%) and in 21% of controls (CI, 11% to 36%) (P less than 10(-9)). Primary cell culture of lymphocytes showed active replication of HHV-6 in 79 of 113 patients (70%; CI, 61% to 78%) and in 8 of 40 controls (20%; CI, 9% to 36%) (P less than 10(-8], a finding confirmed by assays using monoclonal antibodies specific for HHV-6 proteins and by polymerase chain reaction assays specific for HHV-6 DNA. Conclusions - Neurologic symptoms, MRI findings and lymphocyte phenotyping studies suggest that the patients may have been experiencing a chronic, immunologically mediated inflammatory process of the central nervous system. The active replication of HHV-6 most likely represents reactivation of latent infection, perhaps due to immunologic dysfunction. Our study did not directly address whether HHV-6, a lymphotropic and gliotropic virus, plays a role in producing the symptoms or the immunologic and neurologic dysfunction seen in this illness. Whether the findings in our patients, who came from a relatively small geographic area, will be generalizable to other patients with a similar syndrome remains to be seen. Cfr. : http://www.ncbi.nlm.nih.gov/pubmed/1309285
Chronic fatigue syndrome - An update focusing on phenomenology and pathophysiology Cho HJ, Skowera A, Cleare A, Wessely S, Department of Psychological Medicine, Institute of Psychiatry, King's College London, London, UK : email@example.com - Curr Opin Psychiatry. 2006 Jan;19(1):67-73 - PMID: 16612182 Purpose of review - Chronic fatigue syndrome is a controversial condition especially concerning its clinical definition and aetiopathogenesis. Most recent research progress has been made in phenomenology and pathophysiology and we focused our review on these two areas. Recent findings - The phenomenology research supports the notion of a discrete fatigue syndrome which can be distinguished from depression and anxiety. The current case definition, however, may need an improvement based on empirical data. Recent advances in understanding the pathophysiology of chronic fatigue syndrome continue to demonstrate the involvement of the central nervous system. Hyperserotonergic state and hypoactivity of the hypothalamic-pituitary-adrenal axis constitute other findings, but the question of whether these alterations are a cause or consequence of chronic fatigue syndrome still remains unanswered. Immune system involvement in the pathogenesis seems certain but the findings on the specific mechanisms are still inconsistent. Genetic studies provide some evidence of the syndrome being a partly genetic condition, but environmental effects seem to be still predominant and identification of specific genes is still at a very early stage. Summary - The recent findings suggest that further research is needed in improving the current case definition; investigating overlaps and boundaries among various functional somatic syndromes; answering the question of whether the pathophysiologic findings are a cause or consequence; and elucidating the involvement of the central nervous system, immune system and genetic factors. Cfr. : http://www.ncbi.nlm.nih.gov/pubmed/16612182
Low natural killer syndrome - Clinical and immunologic features Aoki T, Usuda Y, Miyakoshi H, Tamura K, Herberman RB - Nat Immun Cell Growth Regul. 1987;6(3):116-28 - PMID: 2442602 Twenty-three patients with low natural killer syndrome (LNKS), 7 males and 16 females, are reported here. These LNKS patients had an age range from 14 to 77 years, with a median of 36.5 years. LNKS is a newly proposed category of immune disorders, being characteristically diagnosed by lowered NK cell activity against K562 target cells as a definite laboratory abnormality, in association with general clinical symptoms of remittent fever and uncomfortable fatigue, persisting without explanation for more than 6 months. Other immune parameters, such as the DNA synthesis of peripheral blood mononuclear cells (PBMCs) in either the presence or absence of mitogens, the T4+/T8+ ratio and the number of Leu-11+ PBMCs, were usually within the normal range. Also, routine laboratory tests did not detect any abnormal findings. The LNKS patients responded well to the administration of an immunopotentiator called 'lentinan', a glucan extracted from the Japanese mushroom Lentinus edodes, despite no responses to conventional fever treatments such as the administration of antipyretics or antibiotics. All LNKS patients observed were universally free of antibodies in their sera to human T-lymphotropic retroviruses I and III and lymphadenopathy was infrequent, indicating that the LNKS is a syndrome independent of acquired immunodeficiency syndrome (AIDS) or AIDS-related complex. Antibodies to other known viruses tested such as Epstein-Barr or measles virus or cytomegalovirus were also negative or not significantly elevated in the sera before the initiation of lentinan administration. If a virus is the cause of LNKS, it may be a new, unknown virus or an unknown substrain of known viruses. None of the LNKS patients has died of this syndrome. Cfr. : http://www.ncbi.nlm.nih.gov/pubmed/2442602
Diagnostic criteria for chronic fatigue syndrome by the CFS Study Group in Japan [Article in Japanese] Kitani T, Kuratsune H, Yamaguchi K, Dep. of Internal Medicine, Osaka University - Nippon Rinsho. 1992 Nov;50(11):2600-5 - PMID: 1287236 Much interest recently has been given to chronic fatigue syndrome (CFS) in Japan as other countries. The CFS Study Group sponsored by the Ministry of Health and Welfare has been developed since April 1991. A diagnostic criteria for CFS was newly proposed by this group. The criteria is substantially based upon the working case definition, which was made by Holmes and colleagues in 1988. There are some modification from CDC working case definition; the criteria of probable cases of CFS was defined and postinfectious CFS was also given. Cfr. : http://www.ncbi.nlm.nih.gov/pubmed/1287236
History of chronic fatigue syndrome [Article in Japanese] Hashimoto N, Center for Medical Education and Information - Nippon Rinsho. 2007 Jun;65(6):975-82 - PMID: 17561685 Chronic fatigue syndrome (CFS) is not a new disease. Similar morbidities have been known as different names since past several centuries. For example, neurasthenia, epidemic neuromyasthenia, myalgic encephalomyelitis, Akureyri disease, Royal Free disease, chronic EBV disease, post-viral fatigue syndrome etc. Much of the recent interest in CFS was generated by incidence of infection-like outbreak at Lake Tahoe in Nevada. The Center for Disease Control (USA) realized that correlation was poor between those patients who had virologic evidence of EBV infection and those who had the symptoms of chronic fatigue. This is a review of the history of CFS (1) Historical perspectives in chronic fatigue cases in past old period (2) Post-viral infectious fatigue and chronic fatigue (myalgic encephalomyelitis) (3) Recent trend of CFS studies and its clinical similar situation Finally, I would like to state that we intend to draw up a new diagnostic guideline for CFS in Japan. Cfr. : http://www.ncbi.nlm.nih.gov/pubmed/17561685
A Community-Based Study of Chronic Fatigue Syndrome Leonard A. Jason, PhD; Judith A. Richman, PhD; Alfred W. Rademaker, PhD; Karen M. Jordan, PhD; Audrius V. Plioplys, MD; Renee R. Taylor, PhD; William McCready, PhD; Cheng-Fang Huang, MS; Sigita Plioplys, MD - Arch Intern Med. 1999;159:2129-2137 Background - Most previous estimates of the prevalence of chronic fatigue syndrome (CFS) have derived largely from treated populations and have been biased by differential access to health care treatment linked with sex, ethnic identification and socioeconomic status. Objective - To assess the point prevalence of CFS in an ethnically diverse random community sample. Design and Participants - A sample of 28,673 adults in Chicago, Ill, was screened by telephone and those with CFS-like symptoms were medically evaluated. Main Outcome Measures and Analyses - Self-report questionnaires, psychiatric evaluations and complete medical examinations with laboratory testing were used to diagnose patients with CFS. Univariate and multivariate statistical techniques were used to delineate the overall rate of CFS in this population and its relative prevalence was subcategorized by sex, ethnic identification, age and socioeconomic status. Results - There was a 65.1% completion rate for the telephone interviews during the first phase of the study. Findings indicated that CFS occurs in about 0.42% (95% confidence interval, 0.29%-0.56%) of this random community-based sample. The highest levels of CFS were consistently found among women, minority groups and persons with lower levels of education and occupational status. Conclusions - Chronic fatigue syndrome is a common chronic health condition, especially for women, occurring across ethnic groups. Earlier findings suggesting that CFS is a syndrome primarily affecting white, middle-class patients were not supported by our findings. Cfr. : http://archinte.ama-assn.org/cgi/content/full/159/18/2129?ck=nck
Emerging Illnesses and Society - Negotiating the Public Health Agenda Randall M. Packard, Ruth L. Berkelman, Howard Frumkin, Peter J. Brown - The Johns Hopkins University Press; 1 edition (July 30, 2004) – ISBN-10 : 0801879426 / ISBN-13 : 978-0801879425 How do new diseases become part of the public health agenda ? Emerging Illnesses and Society brings together historians, sociologists, epidemiologists, public health experts and others to explore this vital issue. Contributors describe the processes by which patients' groups interact with medical researchers, public health institutions and the media to identify and address previously unknown illnesses, including multiple sclerosis, Tourette syndrome, AIDS, lead poisoning, Lyme disease and hepatitis C. The introductory chapter develops a general theoretical model of the social process of "emerging"illness, identifying critical epidemiologic, social and political factors that shape different trajectories toward the construction of public health priorities. Through case studies of individual diseases and analyses of public awareness campaigns and institutional responses, this timely volume provides important insights into the medical, social and economic factors that determine why some illnesses receive more attention and funding than others. Cfr. : http://www.amazon.com/Emerging-Illnesses-Society-Negotiating-Public/dp/0801879426
New therapy for chronic fatigue syndrome to be tested at Stanford Stanford University Medical Center, 8-Jan-2007 - Contact : Louis Bergeron : firstname.lastname@example.org STANFORD, Calif. -- A preliminary study suggests there may be hope in the offing for some sufferers of chronic fatigue syndrome with a new therapy being tested by researchers at the Stanford University School of Medicine. José Montoya, MD, associate professor of medicine (infectious diseases) and postdoctoral scholar Andreas Kogelnik, MD, PhD, have used the drug valganciclovir - an antiviral often used in treating diseases caused by human herpes viruses - to treat a small number of CFS patients. The researchers said they treated 25 patients during the last three years, 21 of whom responded with significant improvement that was sustained even after going off the medication at the end of the treatment regimen, which usually lasts six months. The first patient has now been off the drug for almost three years and has had no relapses. A paper describing the first dozen patients Montoya and Kogelnik treated with the drug was published in the December issue of Journal of Clinical Virology. "This study is small and preliminary, but potentially very important," said Anthony Komaroff, MD, professor of medicine at Harvard Medical School, who was not involved in the study : "If a randomized trial confirmed the value of this therapy for patients like the ones studied here, it would be an important landmark in the treatment of this illness." Montoya has received a $1.3 million grant from Roche Pharmaceutical, which manufactures the drug under the brand name Valcyte, to conduct a randomized, placebo-controlled, double-blind study set to begin this quarter at Stanford. The study will assess the effectiveness of the drug in treating a subset of CFS patients. Montoya is speaking about his efforts at the biannual meeting of the International Association for Chronic Fatigue Syndrome in Fort Lauderdale on Jan. 11 and 12. Chronic fatigue syndrome has baffled doctors and researchers for decades, because aside from debilitating fatigue, it lacks consistent symptoms. Although many genetic, infectious, psychiatric and environmental factors have been proposed as possible causes, none has been nailed down. It was often derided as "yuppie flu," since it seemed to occur frequently in young professionals, though the Centers for Disease Control and Prevention says it's most common in the middle-aged. But to those suffering from it, CFS is all too real and its effects are devastating, reducing once-vigorous individuals to the ranks of the bedridden, with an all-encompassing, painful and sleep-depriving fatigue. More than 1 million Americans suffer from the disorder, according to the CDC. The disease often begins with what appears to be routine flulike symptoms, but then fails to subside completely - resulting in chronic, waxing and waning debilitation for years. Valganciclovir is normally used against diseases caused by viruses in the herpes family, including cytomegalovirus, Epstein-Barr virus and human herpes virus-6. These diseases usually affect patients whose immune systems are severely weakened, such as transplant and cancer patients. Montoya, who had used the drug in treating such patients for years, decided to try using it on a CFS patient who came to him in early 2004 with extremely high levels of antibodies for three of the herpes family viruses in her blood. At the time, she had been suffering from CFS for five years. When a virus infects someone, the levels of antibodies cranked out by the immune system in response typically increase until the virus is overcome, then slowly diminish over time. But Montoya's patient had persistently high antibodies for the three viruses. In addition, the lymph nodes in her neck were significantly enlarged, some up to eight times their normal size, suggesting her immune system was fighting some kind of infection, even though a comprehensive evaluation had failed to point to any infectious cause. Concerned about the unusual elevations in antibody levels as well as the swelling of her lymph nodes, Montoya decided to prescribe valganciclovir. "I thought by giving an antiviral that was effective against herpes viruses for a relatively long period of time, perhaps we could impact somehow the inflammation that she had in her lymph nodes," said Montoya. Within four weeks, the patient's lymph nodes began shrinking. Six weeks later she phoned Montoya from her home in South America, describing how she was now exercising, bicycling and going back to work at the company she ran before her illness. "We were really shocked by this," recalled Montoya. Of the two dozen patients Montoya and Kogelnik have since treated, the 20 that responded all had developed CFS after an initial flulike illness, while the non-responders had suffered no initial flu. Some of the patients take the drug for more than six months, such as Michael Manson, whose battle with CFS has lasted more than 18 years. The former triathlete was stricken with a viral infection a year after his marriage. After trying unsuccessfully to overcome what he thought were lingering effects of the flu, he had no choice but to drastically curtail all his activities and eventually stop working. During his longest period of extreme fatigue, 13 1/2 weeks, Manson said, "My wife literally thought I was passing away. I could hear the emotion in her voice as she tried to wake me, but I couldn't wake up to console her. That was just maddening." Now in his seventh month of treatment, Manson is able to go backpacking with his children with no ill after-effects. Prior to starting the treatment, Manson's three children, ages 9 to 14, had never seen him healthy. Montoya and Kogelnik emphasized that even if their new clinical trial validates the use of valganciclovir in treating some CFS patients, the drug may not be effective in all cases. In fact, the trial will assess the effectiveness of the medication among a specific subset of CFS patients; namely, those who have viral-induced dysfunction of the central nervous system. "This could be a solution for a subset of patients, but that subset could be quite large," said Kristin Loomis, executive director of the HHV-6 Foundation, which has helped fund a significant portion of the preparatory work for the clinical trial : "These viruses have been suspected in CFS for decades, but researchers couldn't prove it because they are so difficult to detect in the blood. If Montoya's results are confirmed, he will have made a real breakthrough." "What is desperately needed is the completion of the randomized, double-blind, placebo-controlled clinical trial that we are about to embark on," Montoya said. Cfr. : http://www.eurekalert.org/pub_releases/2007-01/sumc-ntf010807.php#
Benign myalgic encephalomyelitis (Akureyri disease, Iceland disease) Blattner RJ - J Pediatr. 1956 Oct;49(4):504-6 - PMID: 13358047 Benign myalgic encephalomyelitis (Akureyri disease, Epidemic neuromyasthenia, Iceland disease) is an epidemic disease characterized by stiffness of the neck and back, headache, diarrhea, fever and localized muscular weakness. Cfr. : http://www.ncbi.nlm.nih.gov/pubmed/13358047
Epidemiological study of an epidemic, diagnosed as poliomyelitis, occurring among the personnel of the Los Angeles County General Hospital during the Summer of 1934 Gilliam AG. - Public Health Bulletin, US Treasury Dept. No. 240, pp. 1-90 - Washington : United States Government Printing Office 1938
There are many disagreements within the neuroendocrineimmune community as it relates to chronic fatigue syndrome, but there is one issue that the majority in our community feels very strong about it – the name used to address an “illness” which is believed to affect 4 million individuals in America (CDC).
Note Although an official from the CDC has told P.A.N.D.O.R.A. that the figures of “four million individuals with CFS in the U.S”, is a “comfortable estimate” of the current demographics in the US for CFS, no official statement has been made by the CDC in the matter. Current literature by the CDC states that “over one million Americans are estimated to have CFS.”
Physicians, patients and advocates across the country are constantly debating this important issue.
In 2006, Rich Carson, a CFS survivor and “master thriver”, founder of Pro-Health, Inc., a company which caters to CFS, FM and related illnesses individuals, started a national extremely meaningful advocacy endeavor - “The Campaign for a Fair Name for CFS” - in which the primary goal is to find a suitable name for CFS, that would removed the stigma of laziness perceived by the word fatigue within the name of the illness.
Carson’s inspiration and determination for this campaign came from thousands of fellow individuals diagnosed with CFS who over the years have written to him about daily struggles, coping techniques and the quality of life challenges faced by these individuals notwithstanding his own challenges with CFS as well. One continuing sore point for these individuals as well as for Carson, is how the name CFS trivializes the illness; creates great difficult in their attempts to be taken seriously within the medical community when addressing treatment and ultimately influences very little research funding from the government and pharmaceutical companies.
A side note In Japan the government over the years has addressed the issue of “fatigue” in many levels as it relates to work ethics, culture and epidemiology. They have embraced the word “fatigue” as part of a chronic illness. They realized that the loss of productivity caused by “chronic fatigue” creates a financial toll on their economy in the tune of billions of dollars. The Japanese government has provided greater funding for research on CFS/ME and the work is supported by fatigue research centers, university and pharmaceutical companies. Some American researchers believe that the Japanese “fatigue researchers” or CFS/ME researchers are and or will be ahead on the curve for future scientific breakthroughs.
In the group of physicians and researchers participating in the January 12, 2007 meeting included Anthony Komaroff, MD, David Bell, MD, Leonard Jason, Ph.D., Charles Lapp, MD, Lucinda Bateman, MD and Paul Cheney, MD. (Daniel Peterson, MD was absent, but provided his input by phone). These researchers established a strong consensus that a name change should be pursued now and have agreed that the acronym 'ME' be included before the acronym 'CFS' when giving the diagnosis of CFS to a patient to ease the transition into the new name.
'ME' would then signify “myalgic encephalopathy” – because it describes nervous system pathology with associated muscle pain. They steered away from “myalgic encephalomyelitis” (brain inflammation), one name definition favored by CFS patients in the US. The “blue ribbon panel” chose myalgic encephalopathy because through their research and clinical observations a large number of CFS patients do not have the symptoms that apply to myalgic encephalomyelitis. In choosing the acronym 'ME' it leaves open to two well known definitions favored by advocates.
There are many voices within the advocacy community who feel that although a name change is promising and should be addressed, are worried about disability issues, insurance companies approach to medical payments to a “new” illness, case precedents and the fact that the government is spending a large sum to educate the nation about CFS and now we want a new name which will it dilute the educational campaign efforts ? Will it create additional and more unproductive concerns ? But nonetheless, these same voices also accept that the name 'CFS' currently being used does carry a stigma difficult to remove.
Another area of concern express by other mainstream advocates focus on the fact that 'ME', which is largely used in Europe, also carries a stigma too. They are aware that in parts of Europe, there are advocates who will not use their real names when conducting advocacy efforts for fear of exposure to possible employers, clients and family members. “So, why embrace another name/acronym that can be as troublesome as the 'CFS' one ?”
In addition, the name/acronym 'ME' used in Canada defines myalgic encephalomyelitis, not myalgic encephalopathy which is the name/definition the American scientific research blue panel endorsed. And lastly, let’s not forget that other advocates also think that the 'ME' acronym leaves behind other important symptoms of the illness related to cardio and blood pressure and others are also concerned about the overlapping of CFS with fibromyalgia, Gulf War syndrome.
During the 3-day professional conference a vote by the executive board of the IACFS – International Association for Chronic Fatigue Syndrome proposed to change its name as well to include the acronym 'ME' on its official name for the professional association. A general membership vote will be place on the ballot.
Many advocates also are following with great interest the national educational campaign for CFS ((Spark) – cfr. : http://www.cdc.gov/cfs/ -), through the CFIDS Association of America (cfr. : http://www.cfids.org/sparkcfs/media-coverage.asp -), funded by the CDC, which has created huge media interest for CFS and converged with the state of the art scientific research findings that are coming to light. On a side note I am proud to say that one article on CFS and P.A.N.D.O.R.A. written by Nancy McVicar, medical reporter from the Sun-Sentinel (cfr. 'Research sheds light on Chronic Fatigue Syndrome' dd. November 29, 2006 at : http://www.pandoranet.info/press.html -), reached across the nation in at least 33 newspapers markets, becoming one of the most single successful media exposure for CFS in a long time !
P.A.N.D.O.R.A. was also featured on Telemundo (international Media Exposure and in the “EL Nuevo Herald” too.
So the question then being asked by many researchers and patients advocates is : “Would this well versed educational campaign produce results which would remove the “stigma” related to the words “chronic fatigue” as it is intended ? And if so, shouldn’t the name remain as it is known ?” I understand that the results of the educational campaign will be shared with the neuroendocrineimmune disorders community at large and it might shed much needed light on the subject.
There has not been a reaction from the CDC or from the NIH and from the DHHS on what some are calling a “symbolic gesture” from these well known and well respected researchers and physicians and one, as some might view without any teeth, resulting on a lackluster embracement by governmental health agencies.
Whether the name change will be accomplished soon remains to be seen, but it does send a very strong message to the national and international scientific research and advocacy communities that this is an issue well worthy pursuing and that current scientific evidence warrants a name change. The underlined result of advocates requiring a name change across the board re-vitalizes and re-charges our advocacy movement. Neuroendocrineimmune disorders are “emerging illnesses” and as such the construct of how they are to be perceived, researched, felt and defined falls on every major player that has a stake on the issue.
As a patient advocate I am excited about the fact that chronic fatigue syndrome is generating great interest in the country as well as overseas. As the founder of P.A.N.D.O.R.A. I worry about quality of life issues affecting our community, but I also keep an eye on the horizon, looking for that special one that will bring hope to our community and will ultimately unlock the medical mystery which surrounds CFS. A name change accomplishment ought to be found on that horizon too.
I hope this letter finds you happy and enjoying good health. Our campaign to find a suitable name for Chronic Fatigue Syndrome that does not trivialize the illness - "Campaign for a Fair Name" - is making significant progress. Several of our readers questioned the "legitimacy" of a name that is selected by patients and not medical experts and it is a point well taken. We are moving quickly to circumvent this scenario and here's what we've accomplished so far:
We are organizing a group of experts to guide the patient community in developing a name that would be perceived as legitimate and acceptable to the medical establishment. This "CFS name change advisory committee" will consist of seven to ten of the world's leading CFS researchers and the selection of members is actually not difficult : only the most widely published and respected experts whose careers have revolved around the study and treatment of Chronic Fatigue Syndrome will be involved.
The purpose of this "dream team" will be to discuss and debate possible names and to develop a consensus recommendation for the new name. Since our campaign will be primarily patient powered, it will be the CFS patient community's responsibility to determine the validity of this recommendation - and either accept or deny it on its merits.
Four of the nation's leading CFS experts have already been invited to sit on the committee; all four have graciously accepted. They include Dr. Lucinda Bateman, Dr. Leonard Jason, Dr. Charles Lapp and the amazing Dr. Daniel Peterson.
As a first step, Dr. Jason of De Paul University has generously volunteered to design a process that will allow patients to have their voices heard and their votes tabulated. For those of you who are not aware of Dr. Jason's work, suffice it to say he was behind the landmark study indicating that approximately 900,000 Americans suffer from Chronic Fatigue Syndrome (using the stringent "Fukuda" case definition – cfr. 'The Chronic Fatigue Syndrome: A Comprehensive Approach to Its Definition and Study' at : http://www.annals.org/cgi/content/full/121/12/953 -, which only includes patients who are the worst sufferers). He is easily one of the world's leading CFS researchers as measured by published, peer reviewed research and we are lucky to have him on board.
We hope to complete formation of the "dream team" committee within the next several weeks. If you have followed CFS research for long, you can easily predict our hopefuls. Think credible, think famous, think big. That is our motto for this part of "Campaign for a Fair Name." Stay tuned. Wishing you health and healing, Sincerely, Rich Carson, ProHealth Founder and CFS Patient
There had been disagreement previously when the name 'Myalgic Encephalopathy/CFS' was proposed as many patients preferred ‘Myalgic Encephalomyelitis’. With ME/CFS the issue of whether to use ‘Myalgic Encephalopathy’ or ‘Myalgic Encephalomyelitis’ is avoided completely.
The NCAB was formed with the aid of patients and advocates including Rich Carson, founder of ProHealth Inc/www.immunesupport.com and the man behind the Campaign for a Fair Name, in order to address problems arising from the illness being known as CFS in the US. This name has been used for almost 20 years but many have felt it trivializes what is a very serious condition and prevents proper recognition by medical professionals, politicians, as well as the public.
The board feels that the term ‘chronic fatigue syndrome’ has a negative effect on important issues such as diagnosis, patient care and research funding. Despite research finding that CFS patients experience a level of disability on a par with that of people suffering from multiple sclerosis, AIDS, heart disease and cancer patients undergoing chemotherapy, this fact is not often evident in how patients and the disease, are treated.
The NCAB includes some of the most experienced and well known doctors and researchers who specialize in the treatment of CFS. They are likely to be recognizable to any CFS patient who has researched the condition.
The CFS Name Change Advisory Board
NCAB members (left to right) :
Drs. Anthony Komaroff - David Bell - Nancy Klimas - Leonard Jason - Charles Lapp - Lucinda Bateman - Paul Cheney
CFS had been known as Myalgic Encephalomyelitis in many countries, including the UK, Australia, and Canada, for decades before the term 'chronic fatigue syndrome' was coined in the US. As a result of the influence that the US has in terms of factors such as the amount of research conducted, the name 'CFS' has slowly started to replace 'ME' in these countries as well. It is hoped this concerted effort to change the name to 'ME/CFS' will serve to reinstate the more diagnostically accurate ME throughout the world.
The board agreed to retain CFS in the name for the time being as a way to preserve continuity in research, which currently refers to CFS almost entirely, as well as to make sure patients don't have problems with issues such as disability claims.
A number of influential groups have already forged ahead and changed their names to reflect what the CFS community clearly wants. The International Association for Chronic Fatigue Syndrome (IACFS), the largest organization of CFS researchers and doctors in the world, is now known as 'IACFS/ME'.
Patients will be invited to have the last word on whether to go with 'ME/CFS' in a vote scheduled for May 2008. Rich Carson has commented that patients did not have the chance to have their voices heard when 'CFS' was adopted in 1988, so making sure thay they do this time around is of vital importance.
Also announced was the launch of the Campaign for a Fair Name website which will go live on January 1, 2008. The site will provide all the latest news and information about the name change effort and will promote the use of 'ME/CFS'.
For further information regarding the name change effort please visit : Immunesupport.com -. Rich and the team are inviting patients to get involved in making the name change happen for the benefit of everyone suffering from this devastating illness.
The need for another name than the CFS umbrella term - is very understandable and can only be supported. But what cannot be supported is the intention to replace 'CFS' with 'ME' obviously without at the same time adopting the existing ME definition (Ramsay 1988). This would be historically, medically and diagnostically incorrect.
Reading the info on A Fair Name Campaign at : http://www.afairname.org/ - made me think, that this must be a last desperate try before closing down on 'Myalgic Encephalomyelitis' - a well defined neurological disease, recognized by the WHO and by the Health authorities of several countries outside the US.
People in these countries actually suffer from ME - they do NOT suffer from MEopathy or PVFS or ME/CFS and least of all from CFS. In the 80' and first in the 90's 'MEitis' was on its way to be accepted and respected - until names like 'PVFS', 'CFS' and 'ME/CFS' showed up - and with them the huge and devastating interest of the psychiatrists, which we all are too familiar with - God help us !
No proper definitions are attached to 'PVFS', 'CFS' and 'Meopathy'. The CFS definition is mostly a laugh because it is so broad that almost any disease can fit into these criteria and do take into consideration, that this has screwed up many years of vital research into Meitis.
We – the MEitis patients – are paying an unacceptable high a price for this.
PVFS is not identical to MEitis (according to Ramsay). In many countries PVFS is mostly viewed as a post-infectious condition with a fairly good prognosis and which will typically, although not necessarily, fade away within a couple of years. This is definitely not a correct picture of ME.
ME-opathy can mean any disease in the brain - including Meitis. MEopathy has no specific definition and it is not classified by the WHO or anywhere else.
The term 'ME/CFS' simply doesn't make any sense. ME and CFS are not two medically identical diseases, like this term suggests. The closest ME gets to CFS is, that it may be a subgroup under the CFS umbrella. So what exactly is ME/CFS ?
And Mr. Carson asks : “Why the fuss ?”
No signs of Meitis ? This is not true. The first researchers doing studies on MEitis certainly did find signs of MEitis when doing autopsies. That's why WHO classified MEitis as a neurological disease in the first place. Today researchers still find signs of MEitis also by using brain scans. And for what it's worth : we, who do suffer from MEitis, have no doubts whatsoever about a previous or existing MEitis. We either suffer from it directly every single day of our lives or suffer from it occasionally when having done too much or it reoccurs from time to time. It gives such special symptoms, that having it once when falling ill, you will never forget how it's like.
Do we want to be labelled as having diseases we do not suffer from ? Do we want people with other - maybe treatable disease - to be labelled with a serious disease they do not suffer from ? We certainly do not. Physicians, researchers and psychiatrist shouldn't want this either.
Mr Carson writes : "'ME' is considered by most physicians and patients to be historically and diagnostically correct and it has been used worldwide to describe the disease for close to 50 years."
'ME' has been used to describe ME. Period !
If ME has ever been used to describe CFS or CFS has ever been used to describe ME, this has been medically incorrect. ME and CFS are per definition not identical.
Sticking to 'MEitis' would be historically, medically and diagnostically correct ! Why don't you stick to this ?
You have all the good reasons to do it. And you have no reasons to link ME to CFS, which per definition hasn't much - if anything - to do with ME. Because some CFS diagnosed people inevitably suffer from ME doesn't make CFS identical to ME.
Therefore, it's historically, medically and diagnostically incorrect to switch CFS to ME WITHOUT at the same time adopting the already existing definition for MEitis.
Also I personally find it unethical !
Cfr. also :
A Disease in Search of a Name - The History of CFS and the Efforts to Change Its Name Karen Lee Richards – ChronicFatigue.com, 01-03-2007 Primary Sources : National Institutes of Health, Trans-NIH Working Group on CFS; The CFIDS Association of America; and Encounters with the Invisible by Dorothy Wall Karen Lee Richards is the Expert Patient, specializing in Fibromyalgia and Chronic Fatigue Syndrome, for HealthCentral's ChronicPainConnection (cfr. : http://www.chronicpainconnection.com -). Karen is co-founder with Lynne Matallana of the National Fibromyalgia Association (NFA) and was its vice-president for eight years. From 2002 through 2005 she was Executive Editor of Fibromyalgia AWARE, the first magazine devoted to Fibromyalgia and other invisible illnesses. Cfr. : "Karen Lee Richards - Making a difference in the lives of those living with Fibromyalgia and Chronic Fatigue Syndrome." Much of the history of Chronic Fatigue Syndrome revolves around the efforts to define it and the debates over what to call it. Other diseases that started out being called by one name were later renamed, either for the sake of medical accuracy or for political correctness, but one has to wonder whether any other illness has ever had so many names or so much trouble finding its own identity. In Search of an Identity ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) has been called the “Disease of a Thousand Names.” While 1,000 may be a bit of an exaggeration, a number of different names are or have been used to describe this controversial illness at various times and in various parts of the world, among them : Myalgic Encephalomyelitis - Benign Myalgic Encephalomyelitis - Epidemic Neuromyasthenia - Chronic Epstein-Barr Virus Syndrome - Chronic Mononucleosis Syndrome - Raphe Nucleus Encephalopathy - Low Natural Killer Cell Disease - Atypical Poliomyelitis -Epidemic Vasculitis - Chronic Fatigue Syndrome - Post-Viral Fatigue Syndrome - Chronic Fatigue Immune Dysfunction Syndrome - Myalgic Encephalopathy - Chronic Neuroendocrineimmune Dysfunction Syndrome - Neuroendocrineimmune Dysfunction Syndrome. A few of the names have referred to the location of specific outbreaks : Iceland Disease - Akureyri's Disease - Royal Free Disease - Tapanui Flu. Historical Highlights 1860s – Dr. George Beard identified a syndrome (with many similarities to CFS) that he called ‘neurasthenia.’ 1948 – An epidemic of an ME/CFS-type illness occurred in Akureyri, Iceland. Because the outbreak followed two clear cases of poliomyelitis, patients were first diagnosed with poliomyelitis but this was later discarded because no poliovirus was ever isolated in any of the patients. 1956 – ‘Myalgic encephalomyelitis’ (ME) was first defined in an editorial entitled “A New Clinical Entity ?” by Sir Donald Acheson, MD, published in The Lancet. The article discussed several epidemic outbreaks that occurred in prior years, as described by A. Melvin Ramsay, MD and others. Acheson suggested the term ‘benign myalgic encephalomyelitis’ – benign referring to “the immediate mortality-rate of nil.” 1984 – The first documented clusters of CFS-like cases in the U.S. occurred in Lake Tahoe, Nevada and Lyndonville, New York. 1985 – The National Institute of Allergy and Infectious Diseases held a consensus conference at which the name ‘chronic Epstein-Barr virus’ (CEBV) was used, causing CEBV to become the name of choice for a short time. Medical journals began referring to CEBV as a legitimate illness. 1986 – In a paper giving a definitive description of ME, Dr. Ramsay says that the syndrome known as myalgic encephalomyelitis in the UK is called ‘epidemic neuromyasthenia’ in the USA. 1987 – The CEBV Association was founded by Marc Iverson and Alan Goldberg. In the late ’80s the group changed its name to The CFIDS Association of America at the suggestion of immunologist Seymour Grufferman who suggested the name ‘chronic fatigue immune dysfunction syndrome’ to reflect the immune abnormalities and lessen the emphasis on fatigue. 1988 – The U.S. Centers for Disease Control and Prevention (CDC) chose to name this mysterious illness ‘Chronic Fatigue Syndrome’ and published a case definition (the “Holmes criteria”) to be used for research. Several other more medical-sounding names were considered but dismissed because they lacked definitive proof of a causal agent. As Dorothy Wall observed in her book : 'Encounters with the Invisible' : “It was one of those seemingly innocuous bureaucratic acts with untold consequences.” 1990 – The November issue of Newsweek featured a cover story on CFS, nicknaming it ‘yuppie flu’ based on the erroneous assumption that it mainly affected upper class women. While the article certainly brought CFS to the forefront, it probably did more harm than good. By implying that it was a form of malingering or burnout, the article contributed to the public’s perception of CFS as a psychosomatic condition. 1993 – The CDC put together a panel of 11 federal scientists to hear and consider arguments related to reworking the definition of CFS and changing the name of the illness. Unfortunately, none of the panel members actually treated CFS patients, so the pleas for a name change fell on deaf ears. 1994 – The CDC issued a revised case definition for CFS, known as the Fukuda or research definition. Although they predictably did not change the name, they did acknowledge its inadequacy. 1995 – The first Congressional briefings about CFS were held and, for the first time, the U.S. Department of Health and Human Services (HHS) added patient advocates to its CFS Coordinating Committee (CFSCC). 1996 – Congress asked the Secretary of HHS to consider renaming CFS. 1997 – Both the CFIDS Association and CFS-News.org conducted surveys to determine patients’ feelings about the name-change question. In both surveys an overwhelming majority of patients wanted a name change. Most seemed to prefer either myalgic encephalomyelitis or myalgic encephalopathy, both of which use the acronym ME. 1999 – A study at DePaul University suggested “that medical trainees perceive the ME label as being indicative of a more chronic and debilitating illness as compared to the labels of CFS or FN.” In the study, medical trainees were presented with identical case studies of patients with classic CFS symptoms. They were told the patient had Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS) or Florence Nightingale disease (FN). Trainees who received the cases labeled CFS were less likely to assign a medical cause and more likely to prescribe psychotherapy and/or psychotropic drugs. Of trainees who were told the patient had FN or CFS, more than 40 percent believed the patient was likely to get better. Of those who were told the patient had ME, only 16 percent thought the patient would improve. 2000 – The CDC convened a case-definition workshop commissioned with exploring the challenges of studying and defining CFS. The CFSCC formed a name-change workgroup who began to identify possible alternative names. 2001 – The CFSCC established a workgroup to study the CFS name-change issues but it was dissolved prior to submitting its recommendations. 2003 – Although the CFSCC was dissolved, the written recommendations of its 2001 name-change workgroup were submitted to the new Chronic Fatigue Syndrome Advisory Committee (CFSAC). They recommended a new umbrella term, ‘Neuroendocrineimmune Dysfunction Syndrome’ (NDS) along with suggestions for sub-groups for the illness. In December, the CFSAC issued their “Position Statement Concerning the Name Change Proposal.” The first four points detailed their agreement that the name ‘Chronic Fatigue Syndrome’ is a poor and inappropriate choice. However, their fifth point concluded that this was not the appropriate time to change the name and was followed by seven reasons for this decision. 2006 – On August 9, Rich Carson, CFS patient and founder of ProHealth, Inc., launched the “Campaign for a Fair Name” and vowed not to stop until the name was changed once and for all. He began organizing a “dream team” of seven to 10 of the world’s leading CFS researchers to guide the patient community in developing a name that would be perceived as legitimate and acceptable to the medical establishment. ME or ME ? Although dozens of different names have been suggested to replace 'CFS', the discussion always seems to come back to 'ME'. The acronym 'ME' can actually stand for either 'Myalgic Encephalomyelitis' or 'Myalgic Encephalopathy'. The term 'Myalgic Encephalomyelitis' means muscle pain accompanied by inflammation of the brain and spinal cord, while 'Myalgic Encephalopathy' indicates muscle pain and damage to the brain and spinal cord of unknown origin. It’s not surprising that 'ME' continues to rise to the top of the name-change pool. It has been used in medical literature for 50 years, which automatically gives it more familiarity and credibility in the medical community. Another point in 'ME'’s favor is that it is widely used in Europe and throughout much of the world (except for the U.S.). What’s in a Name ? Thinking about the name 'Chronic Fatigue Syndrome' brings to mind two well-known quotes : -* “More than 400 years ago in his play Romeo and Juliet William Shakespeare wrote , “What’s in a name ? That which we call a rose by any other name would smell as sweet.” But I daresay if that rose were named “thorny branch” after one of its prominent characteristics, few people would bother to smell it and discover its beautiful fragrance. Unfortunately the name 'Chronic Fatigue Syndrome' is the equivalent of thorny branch. Because 'CFS' doesn’t sound all that bad, it is difficult to get the medical community, government and general public to look deeper and discover just how serious the illness is. -* Today a popular marketing mantra says, “Perception is reality.” While perception may not be actual reality (i.e., truth), it can drastically affect certain aspects of reality. For example, the perception that CFS is not a serious illness does not change the reality of its debilitating effects on patients. It does, however, affect how much money is allocated for research, whether disability benefits are awarded and whether patients are treated as malingerers or as seriously ill individuals. The perception engendered by a name that trivializes the illness results in the reality of inadequate care and treatment for its sufferers. And so the battle rages on. There are strong, even passionate, feelings on every side of this issue. The one thing just about every CFS patient agrees on, though, is that the name needs to change. It’s impossible to please everyone, so no matter what name is ultimately selected, there will be a few who don’t like it. But in the end, most believe almost anything would be better than 'Chronic Fatigue Syndrome'. Cfr. : http://www.chronicfatiguesupport.com/library/showarticle.cfm/id/7603Cfr. http://www.chronicfatiguesupport.com/library/showarticle.cfm/id/7603
Changing the Name of 'Chronic Fatigue Syndrome' – An update Pat Fero : email@example.com - Wisconsin CFS Association : firstname.lastname@example.org - Excerpted from the Fall 1998 issue of the WI - CFS Association "Lifeline" newsletter The Chronic Fatigue Syndrome Coordinating Council (CFSCC) met in late April in Washington to discuss significant issues affecting our patient population. The Wisconsin CFS Association posted a letter to activist Roger Burns and asked him to represent our viewpoint about the name change at the CFSCC meeting (cfr. : page 9 for our position paper on the subject). For the purpose of this update, I asked for clarification from Mr. Burns about the results of the meeting. What follows is a summary of his comments. With the assistance of Congressman John Porter, Mr. Burns was able to arrange to make a special presentation before the committee on April 29. The chair of the CFSCC preceded this presentation by stating that the name of the illness is an international matter which should not be decided by a national group such as the CFSCC. Mr. Burns presented the results of a name change survey in which 250 responded and then he outlined the issues, questions and conflicts over name change. He suggested that the use of an eponym would remove the stigma caused by the name 'chronic fatigue syndrome' and not interfere with the scientific aspects of choosing a new name. Mr. Burns requested that a panel be formed to deal with name change and stigma issues. Also, he asked that Surgeon General Dr. David Satcher make a public statement to help legitimize CFS. At the end of the day during a summary of events, no action was taken on forming a panel. Committee member Kim Kenny of the CFIDS Association announced she would draft a statement that the CFSCC might issue in October which would help legitimize CFS. A copy of the statement would be sent to the US Surgeon General. My view is that a name change is a top priority because the advocacy work we do is counter productive when we have such a goofy label for our illness. It begs not to be taken seriously. In the dictionary 'fatigue' means 'tired' or 'weary'. Are you kidding ? That’s like saying that 'dead' means one is 'permanently disabled' - a true statement, but hardly an accurate account of the status of that person’ health. In the old Bill Cosby tapes, Bill recollects his mama say : "I’m sick and tired ... sick and tired." Did mama Cosby have CFS too ? What’s in a name ? Think about once popular names that new parents now avoid. A high school boy named Richard is definitely 'Rich' or 'Ricky'... The point is that language is alive and it changes. We incorporate new words into our vocabulary all the time and drop words when they are no longer appropriate. Did you know that Multiple Sclerosis was once labeled 'Hysterical Paralysis Syndrome' and Downs Syndrome was called 'Mongolian Idiot Syndrome' ? Although I’m mystified that Myalgic Encephalomyelitis/Encephalomyopathy (M.E.) was 'discovered' and renamed 'chronic fatigue syndrome' in the United States, perhaps it made sense to researchers ten years ago. Does it make sense now ? Can the 'CFS' and 'CFIDS' labels possibly help further the work of scientists ? It seems to me that the complexities of M.E. are so great that a label of CFS totally minimizes ongoing scientific research. 'Chronic fatigue syndrome' is no longer appropriate. It just doesn’t seem that hard to me to accept the World Health Organization’s label of M.E. or an eponym at the very least--end of discussion. Done. Patients will no longer have to unsuccessfully define and defend 'fatigue' and the discussion will be left up to researchers who will eventually figure it out. Advocates will no longer have to haul the 'fatigue baggage' up the hill as they try to offer information and support to patients and their families. If Surgeon General Satcher issues a statement about the seriousness of the illness and the name is not changed, the baggage remains. It is a fact that language evolves and this metamorphosis is quite beyond the control of any of us. So, let’s deal with it NOW. Cfr. : http://www.wicfs-me.org/name_change.htm
Charles W. Lapp, MD - Chronic Fatigue Syndrome Pioneer, Researcher and Clinician Karen Lee Richards – ChronicFatigue.com, 01-29-2008 Karen Lee Richards, another member of the Fair Name Implementation Committee, is the Expert Patient, specializing in Fibromyalgia and Chronic Fatigue Syndrome, for HealthCentral's ChronicPainComnection (http://www.chronicpainconnection.com). For more information about Karen, who co-founded the National Fibromyalgia Association (NFA) with Lynne Matallana in 1997, see : "Karen Lee Richards - Making a difference in the lives of those living with Fibromyalgia and Chronic Fatigue Syndrome." .../... The Long-Awaited Name Change Talking about the proposed name change, Dr. Lapp says : “There is so much attributed to the word “fatigue.” Whenever you use that word, people immediately associate it with laziness. It’s not laziness or over-exertion. It’s a true lack of energy. It’s a true physiological problem that patients are having.” Dr. Lapp has been a big proponent of the name change from the very beginning. He was part of the initial Name Change Workshop set up in the late 1990’s by the Department of Health & Human Services’ CFS Coordinating Committee. They worked for three years and ended up with a name nobody liked. He says he’s always been a fan of using “ME” - meaning 'myalgic encephalopathy' - first because 'ME' is already in use and is widely accepted around the world; and secondly because he thinks myalgic encephalopathy tells a lot more about the disabling symptoms of this disease than CFS does. When asked if he thinks this current name change effort has a reasonable chance of success, he replied : “I think that Rich Carson has done more for the name change than anybody else, to tell you the truth. By keeping it in front of the public eye, by keeping it in front of the patients on a regular basis and because of the wide distribution of the CFS and FM Newsletters that go out, I think he’s made tremendous inroads. We had virtually no impact whatsoever from the Name Change Workshop and we had no response whatsoever from the government. Those of us who served on the committee and were still very concerned about changing the name realized that this is not going to come from the government; it’s not going to come from researchers; it has to come from the grassroots. I think as more of us use the term ME/CFS, it’s going to come into acceptance just as CFIDS did 10 years ago when that was introduced. It starts with organizations like the IACFS. We changed the name to 'IACFS/ME'. And when professionals like myself and Lenny Jason and Tony Komaroff start using the term 'ME', then other people are going to start adopting it, too. They figure, if those guys are doing it, there must be something to it. All of our reports go out with ME on them now.” Cfr. : http://www.chronicfatiguesupport.com/library/showarticle.cfm/id/8305
Chronic Fatigue Syndrome - Changing the Name Roger Burns - Reprinted from Emerge, Sept 1996 Roger Burns publishes the 'CFS-News Electronic Newsletter', which is distributed via the Internet to over 2700 individuals and organisations in 30 countries. He also serves as moderator for several Internet-based CFS discussion groups. Roger is promoting international discussion amongst people with CFS on suitable alternatives to the name 'Chronic Fatigue Syndrome'. Why does the name need to be changed ? We are shackled by the disease. But the name 'Chronic Fatigue Syndrome' also holds us down. The word 'fatigue' - the 'F' word - connotes to most people a merely mild tiredness. That weak-willed image tragically re-inforces the negative perceptions of 'no proven illness', 'all in the head' and 'malingering' that are still in the minds of the public and of most medical doctors, not to mention employers and those who make decisions about disability benefits. The name CFS is therefore a major obstacle in our efforts to obtain appropriate medical treatments and fair decisions on disability benefits. In addition, it is too often used pejoratively as a term of derision against patients in their daily lives by those who don't or don't wish to, understand this illness. What should the new name be ? This is a difficult question. There are two major obstacles in choosing a new name. *- Almost all scientists oppose changing the scientific name before the cause of the illness can be found and verified. They are concerned that if we change now and then later the cause is found and the proven cause turns out to be in conflict with the second name that was chosen, then we will all be obligated to choose a third name at that point. And that will lead to much confusion, perhaps even a loss of what little credibility we've been able to earn so far (scientists also have other reasons for opposing a change : cfr. Below). *- While virtually all CFS patients want the name changed, it seems that almost every patient has a different idea of what the new name ought to be and many strongly oppose the alternatives proposed by others. This itself is quite an obstacle, since if the scientists oppose a change, then a lack of consensus by the patients in addition would seem to guarantee failure. Included below is a discussion of possible alternatives from which to choose a new name. There may be ways to overcome these obstacles. Consider the following : *- Many diseases have both a scientific name and an eponym, ie. a name taken from a person associated with the disease. If we choose an eponym, then it could be used in parallel with the scientific name. The scientists could go on using the name they prefer, unhindered by the eponym promoted for use by the public outside of the scientific community. *- If there is a broad and thorough discussion within the world-wide CFS community about what name to choose, then perhaps we can come to a consensus and then move to promote that new name for public use. Again, see below for a discussion of alternative names/eponyms. *- If we can't form a consensus on a single eponym, then we might instead consider promoting one of the less-widely used scientific names that is already in use that may be less offensive than the current name (some alternatives are : one of the variants of 'M.E.'; 'Post-Viral Fatigue Syndrome'; 'CFIDS'). Cfr. the discussion below. Arguments that oppose changing the name * - To repeat what has been mentioned above : almost all scientists oppose changing the scientific name before the cause of the illness can be found and verified. They are concerned that if we change now and then later the cause is found and the proven cause turns out to be in conflict with the second name that was chosen, then we will all be obligated to choose a third name at that point. And that will lead to much confusion, perhaps even a loss of what little credibility we've been able to earn so far; some progress has been made in legitimising the illness in the eyes of researchers, clinicians, grantsmakers, legislators and the media; that which has been gained may be lost if confusion is added by creating yet another name; scientists would also object to any new name or eponym because of the need to add a new keyword to indexes for medical articles, making literature searches by scientists more difficult; there are many keywords for CFS as it is. *- 'Fatigue' is a broad medical adjective, covering a wide variety of conditions including exhaustion. As a medical term it is widely understood, therefore (it is argued) there should be no misunderstanding about it and thus there is no need to change the current name. A counter-argument to scientists There are compelling reasons to change the name that is used commonly in public discussion; adopting an eponym to be used in parallel to the scientific name that is used solely among researchers should not interfere with scientists' needs at all; to hold off on any name change until the cause may be found might be tantamount to waiting for an event that will never happen. Noted researcher Mark Demitrack MD has suggested that CFS may have no single cause but rather may be a generalised condition, just like high blood pressure has no one cause yet is a known medical entity with accepted treatments. If Demitrack is right, then we may as well add an eponym now since there may be no 'single etiology breakthrough' to wait for. New name - the options -* Eponyms - Gilliam-Ramsay Syndrome For - Drs. Gilliam and Ramsay have been leaders in researching outbreaks of CFS or CFS-like illnesses. Against - This suggested name may get confused with Guillian-Barre Syndrome or Ramsey's Disease. The term 'syndrome' may still be weak. The new name should be short and easy, not hyphenated. It's not clear that the outbreaks researched by Gilliam and Ramsay were CFS/ME. - Florence Nightingale Syndrome For - Florence Nightingale is a widely respected, world renowned figure who founded the International Red Cross and the first formal school for nursing. For decades she had an undiagnosed illness whose symptoms seem consistent with CFS. Against - Women's diseases often have difficulty in getting recognised and accepted, therefore choosing a female eponym may compound the kinds of problems that we are trying to avoid. Also, a widespread oral tradition among professional nurses is that Nightingale's undiagnosed illness was actually syphilis. That image may not help our cause. Tom Hennessy, founder of the May 12 movement, explains that there are good historical arguments to show that that story is not true. But it may nonetheless be difficult to overcome such a belief that is widespread within a major health profession. Lastly, the shortest version of a name is what tends to get used most often and 'Nightingale Syndrome' might sound to many like it is a bird's disease. - Charles Darwin Syndrome For - Darwin is another world renowned figure who had an undiagnosed, debilitating illness. Against - The fact that Darwin's illness was undiagnosed can be counted as a negative by many who are concerned that CFS is itself an unproven illness. Also, many patients and their organisations have already invested much effort in promoting May 12. Day which is associated with Florence Nightingale and so making this switch might be confusing for many. -* Alternative scientific names One of the strategies discussed above is that if no consensus can be reached about an eponym, then we might consider instead promoting one of the other already-established scientific names more widely. Some alternatives are described below : - Myalgic encephalomyelitis For - Along with CFS, this is already one of the most widely used names of the disease, recognised all around the world, but not in the USA. Against - 'Myelitis' means 'spinal cord inflammation'. There is little or no evidence of this in CFS, so this old name is outdated. Many scientists already oppose this term. - Myalgic encephalopathy For : 'Encephalopathy' merely means 'brain disease', for which there is some evidence in the medical literature. This small variation of the widely used name myalgic encephalomyelitis may find easy acceptance and might not be scientifically objectionable. Since its acronym would still be 'M.E.', the many groups that are already wedded to that acronym may be quite at ease with this proposal. Against - This variant of M.E. is not yet in general use. - Post-Viral Fatigue Syndrome For - A name already used in many medical articles. Against - This name may be a weak candidate because the evidence for viral infection is not clear at all, so for all we know this theory may be overturned some day, making the name obsolete. Also, the evidence that there is for viral infection is seen only in certain cases of CFS, not all, so even if true, it might not characterise all who have the disease. Expect scientific opposition. - CFIDS - Chronic Fatigue and Immune Dysfunction Syndrome For - This name is becoming widely used in the USA. As a longer variant of 'CFS', it tends to dilute the 'F' word (fatigue). Against - This name still contains the 'F' word, which is what we are trying to avoid. Scientifically, there is a big question as to whether immune dysfunction is truly one of the two most prominent characteristics of this disease. Also, the name 'CFIDS' is not used at all outside of the USA and it is rarely used in medical literature. The challenge You can see that there are important difficulties for each alternative that has been mentioned above. Can we overcome these obstacles to form a world-wide consensus behind one of the choices ? OR, are there other alternatives that would be more viable ? Have your say ! You can propose and comment on new names by sending recommendations to Roger Burns. Please include a reasoned argument about why the name is a good choice. Give biographical information about any person associated with an eponym you might propose. (1)- 1996 -- Send to Roger by e-mail at : CFS-NEWS@LIST.NIH.GOV or by postal mail to Roger Burns, 2800 Quebec St. NW, Suite 1242, Washington, DC 20008-1240, USA). Cfr. : http://avoca.vicnet.net.au/~mecfs/general/name.html (1)- 2007 – Go to : http://www.afairname.org/petition.cfm & http://www.afairname.org/volunteer.cfm
Chronic Fatigue Syndrome' Challenged Rich Carson, CFS patient – ChronicFatigue.com, 08-14-2007 A grass roots effort to change the name 'chronic fatigue syndrome' is gaining momentum, giving patients the opportunity to vote on a new name. Just about everybody knows that the name ‘chronic fatigue syndrome’ trivializes the seriousness of the disease. It is a bad name that has lasted too long and robbed us of our dignity, inch by inch, one day at a time. The name makes light of our suffering and is hurtful to patients everywhere. One of our readers who has a way with words said that calling the disease chronic fatigue syndrome is like calling Parkinson’s disease “chronic shakiness syndrome.” I could not have said it better. An effort to change the name was launched in August 2006 with the introduction of Campaign for a Fair Name - the effort to replace chronic fatigue syndrome in the United States with a name that is respectable. The centerpost of the campaign was the January 2007 summit meeting of the Name Change Advisory Board - eight of the most published, quoted and highly regarded CFS experts in the world. Collectively they have amassed over 150 years of CFS research and clinical experience. The Advisory Board felt strongly that the name was inappropriate and that a change was imperative. Their consensus recommendation was that the name be changed to ME-CFS, short for Myalgic Encephalopathy-Chronic Fatigue Syndrome. It should be noted that ME-CFS represents a convenient catchphrase, describing both ‘Myalgic Encephalopathy’ and ‘Myalgic Encephalomyelitis’ - the name that CFS has been called in most of the world for close to 50 years. Either way, many believe ME-CFS is a win for everybody and the reasoning seems sound to me. In line with the Name Change Advisory Board, the International Association for Chronic Fatigue Syndrome - or IACFS - voted to change their name to the IACFS/ME. This is the largest organization of CFS researchers and clinicians in the world. The next step is to learn the opinion of the most important experts - the patients, whose voices have yet to be heard. As a group and with the backing of the Name Change Advisory Board and the IACFS/ME, we now find ourselves with the perfect opportunity to change the name. A voting survey will be introduced within the next several weeks that will finally give patients the chance to choose the new name. This opinion poll will soon be available on ProHealth’s website and on the websites of many other U.S.-based CFS and FM organizations. This is our chance to be heard. We did not have this opportunity when the disease was named 19 years ago. But we do now. I encourage you to make your opinion known by voting in the upcoming name change opinion poll and to encourage other patients to do the same. You owe it to yourself and you owe it to patients everywhere. Sincerely, Rich Carson, CFS patient Cfr. : http://www.chronicfatiguesupport.com/library/showarticle.cfm/id/8230Cfr. : - http://www.chronicfatiguesupport.com/library/showarticle.cfm/id/8230 - http://www.immunesupport.com/library/showarticle.cfm/ID/8230/t/CFIDS_FM - http://www.chronicfatiguesupport.com/library/showarticle.cfm/ID/8230/t/CFIDS_FM
Karen Lee Richards – Making a difference in the lives of those living with Fibromyalgia and Chronic Fatigue Syndrome Teri Robert – ChronicFatigue.com, 09-04-2007 Teri Robert is a patient advocate, writer, and the Lead Expert on The HealthCentral Network'sMyMigraineConnectionsite. Her book "Living Well with Migraine Disease and Headaches: What Your Doctor Doesn't Tell You...That You Need to Know (Living Well)" - cfr. : http://www.amazon.com/Living-Well-Migraine-Disease-Headaches/dp/0060766859 - was published in 2005 by HarperCollins and remains one of the top sellers in the field. .../... What’s In A Name ? Since its launch in August 2006, Karen has been actively involved in the current campaign to change the name of Chronic Fatigue Syndrome. Regarding the name change, Karen wrote : “The first question to consider is why do most of us want a name change ? It’s because the name Chronic Fatigue Syndrome trivializes a serious illness by naming it for one of its symptoms, namely fatigue - a symptom most people experience at some time in their lives. Since CFS is not a medical-sounding name, family members, friends and even doctors tend not to take it seriously.” Karen says she is proud to be a member of the Fair Name Implementation Committee and stands firmly behind the CFS Name Change Advisory Board’s recommendation to work toward changing CFS to the transitional acronym ME/CFS. As part of her effort to educate patients about the name change and the reasons behind it, Karen wrote two comprehensive articles : “A Disease in Search of a Name - The History of CFS and the Efforts to Change Its Name” and “Why ME/CFS ? A perfect name isn't necessary, but a respectable name is essential.” .../... Cfr. : http://www.chronicfatiguesupport.com/library/showarticle.cfm/id/8306
Leonard Jason, PhD - ME/CFS Researcher and Bridge Builder Kristy Katzmann – ChronicFatigue.com, 09-03-2007 .../... Proof That the Name Affects Patient Treatment From 1998 to 2000, Jason did a series of studies scientifically evaluating name attribution and its effect on patient treatment. His team gave medical residents case studies that presented people with the classic symptoms of ME/CFS, but labeled each with a different name : 'ME', 'Chronic Fatigue Syndrome' or 'Florence Nightingale Syndrome'. So, what’s in a name ? As it turns out, a lot. The patients in the group with the most scientific sounding name (ME) received the best overall treatment and attention, while patients in the group with the least scientifically derived name ('Florence Nightingale Syndrome') received the worst treatment. Knowing that attribution really does matter still leaves the question of what to properly call this illness. The front-runner in name change proposals is 'ME/CFS'. “'ME/CFS' is a compromise. It potentially unifies many different groups (involved in the cause),” says Dr. Jason : “We’ll never make progress if we have to pick a winner. It is more about compromise and creating a coalition.” He suggests stressing the acronym ME/CFS as a way to create more unity and empower patients with the option to use variations of the name as they see fit (two possibilities being 'Myalgic Encephalomyelitis' and 'Myalgic Encephalopathy'). He is also focusing on developing ME/CFS subtypes in order to more accurately identify and treat this complex illness - and sees the goal as finding a name that meets the needs of as many different groups involved in the ME/CFS movement as possible, while still allowing continuity in the great work that has already been done on its behalf. “I see myself as trying to help develop a consensus,” says Dr. Jason : “I think I’m in a very good position to dialogue with lots of people and because I am a community psychologist, I seem to have the ability to keep the channels of communication open.” .../... Cfr. : http://www.chronicfatiguesupport.com/library/showarticle.cfm/id/8013
ME/CFS Gets the Nod ImmuneSupport.com, 10-30-2007 The CFS Name Change Advisory Board (NCAB) has amended its initial proposal and now recommends that the name for ‘chronic fatigue syndrome’ be changed to the acronym ME/CFS (note : many illnesses are known by their acronym - e.g., HIV.). The resolution modifies their earlier recommendation that the 'ME' in ME/CFS should stand for Myalgic Encephalopathy. The NCAB recommends the transitional use of ‘CFS’ in the new name for logistical reasons - primarily to prevent harming patients involved in disability and medical insurance issues and to provide continuity in the research area. Ultimately, over time, the ‘CFS’ will be eliminated. The Board encourages the change because the trivializing nature of the name ‘chronic fatigue syndrome’ negatively affects diagnosis, patient care and research funding. Although estimates suggest that more than a million Americans have ME/CFS, less than 20 percent have been diagnosed. Even though doctors equate the experience of CFS with that of a cancer patient undergoing chemotherapy, few patients receive adequate medical care. The severity of CFS is as significant as that experienced with other serious diseases, such as multiple sclerosis, COPD end stage AIDS and kidney failure; yet CFS consistently ranks among the poorest federally funded diseases. The Board’s resolution to propose the acronym ME/CFS demonstrates their sensitivity to disagreements within the patient community. Many patients insist that 'ME' stands for 'Myalgic Encephalomyelitis', the name that has been commonly used to describe the illness in most countries for over 50 years. Others maintain that 'ME' stands for 'Myalgic Encephalomyelitis' stating that encephalopathy is more diagnostically correct. The acronym 'ME' removes the ‘which is best’ barrier. Many illnesses have several names. By supporting the acronym ME/CFS, we build unity within the patient community against the terrible harm that has been caused by the term chronic fatigue syndrome. Daniel Peterson : “The NCAB includes eight of the most distinguished experts in the field, who collectively bring to bear more than 150 years of ME/CFS research and clinical experience. Members include Drs. Lucinda Bateman, Paul Cheney, David Bell, Leonard Jason, Nancy Klimas, Anthony Komaroff, Charles Lapp, and Daniel Peterson”. Cfr. : - http://www.immunesupport.com/library/showarticle.cfm?id=8455 - http://www.meassociation.org.uk/content/view/405/70/ - http://www.chronicfatiguesupport.com/library/showarticle.cfm/ID/8455/t/CFIDS_FM
Name Change Campaign - The Choice Is Yours ! Rich Carson – ChronicFatigue.com, 09-05-2007 The name change campaign is alive and well with a move toward the use of ME/CFS, making patient unity and support crucial in moving forward with its implementation. We are making great progress in changing the name ('Chronic Fatigue Syndrome') that has caused us such anguish and humiliation for the past 19 years. After years of suffering its injustices, we are just months away from implementing a new name that will help us gain the recognition and support that we deserve. To recap, a serious effort to change the name was launched in August 2006 with the introduction of Campaign for a Fair Name. The Name Change Advisory Board, composed of eight of the most highly regarded ME/CFS experts in the world, was formed and met in January 2007 to come up with a recommendation for a new name. The Advisory Board determined 'ME/CFS' ('Myalgic Encephalopathy-Chronic Fatigue Syndrome') was the best overall choice for several key reasons : - 'ME/CFS' is medically and diagnostically correct - 'ME/CFS' is a scientific sounding name which gives the illness more credibility - 'ME/CFS' is intended to be used as an umbrella term to satisfy as many groups as possible - 'ME/CFS' still includes “CFS” which avoids problems with losing insurance or disability claims - 'ME/CFS'provides freedom and flexibility - some folks like 'Myalgic Encephalopathy', others prefer 'Myalgic Encephalomyelitis'. The recommendation has been made and in the next few months we are moving to the next exciting phase : your vote ! There are bound to be conflicting opinions and emotions about the new name, but there is one thing that we can all agree on : the name needs to change ! In order for that to happen, we need to get behind the chosen name and make a strong, unified impact. If we don’t do this, if we get preoccupied with picking a “winner” we are in grave danger of losing the battle altogether and the entire effort could collapse. Here are some crucial points to consider. 'ME/CFS' gives you the freedom of using 'Myalgic Encephalopathy' or 'Myalgic Encephalomyelitis'. You get to choose whichever term you prefer because as an umbrella term, 'ME/CFS' stands for both. In fact, in an exciting new development, the UK has issued a clinical guideline for the National Health Service referring to : 'Chronic fatigue syndrome/Myalgic encephalomyelitis (or encephalopathy)' – implying the two are interchangeable and that both legitimately describe the same illness…ME. Again, the choice is yours. Over the next several months, we will be introducing you to our 'Dream Team' the members of the ‘New Name Implementation Committee’ - the NNIC. I am honored to introduce our first four members, Drs. Leonard Jason, PhD, David Bell, MD and Charles Lapp, MD; and Karen Lee Richards, a leading ME/CFS & FM patient advocate and co-founder of the NFA. These and other NNIC members - world-renowned ME/CFS experts, prominent patient leaders and activists, CFS-ME publishers, authors and celebrities - will work together to implement a name that will finally bring dignity to patients starving for respect and recognition. With hope and conviction, Rich, CFS patient and volunteer Note : Looking for the best description ever of the name change effort ? Then read this week's feature article by Dorothy Wall, author of the much-admired book : 'Encounters with the Invisible - Unseen Illness, Controversy and Chronic Fatigue Syndrome'. Cfr. : - http://www.chronicfatiguesupport.com/library/showarticle.cfm/ID/8300/t/CFIDS_FM - http://www.immunesupport.com/library/showarticle.cfm/ID/8300/t/CFIDS_FM
Name change news - And plans for the road ahead Rich Carson, Patient advocate – ChronicFatigue.com, 10-30-2007 Virtually everyone knows that ‘chronic fatigue syndrome’ is a horrible name that harms patients by making light of their suffering. It is a name that has inflicted unimaginable harm and it has lasted too long. How could people with such a weak sounding disease be as dreadfully sick as cancer patients on chemotherapy ? How could they be suffering as much as someone with multiple sclerosis, COPD or in the end stages of AIDS or kidney disease ? Yet according to research occurring around the world, that is exactly how bad CFS really is. Everybody experiences fatigue from time to time. However, the fatigue of CFS is extreme and pervasive - more importantly, it is only one of many symptoms of the illness. The term ‘chronic FATIGUE syndrome’ trivializes the seriousness of our disease and damages patients every minute of every day. Imagine calling Parkinson’s disease ‘chronic shakiness disease’! Or calling Alzheimer’s disease ‘chronic forgetfulness disease’! It would be reprehensible - a shameful travesty. The Campaign for a Fair Name is providing an effective vehicle for patients to take control of their destiny by removing the name chronic fatigue syndrome once and for all. The Campaign is gaining ground on several fronts and momentum is building. Here’s what’s happening : New Advisory Board Resolution The Name Change Advisory Board (NCAB) approved a resolution this week to amend their earlier recommendation for the new name from ‘myalgic encephalopathy/CFS’ to the acronym ME/CFS (cfr. : "ME/CFS Gets the Nod") There has been disagreement within the patient community about which ‘E’ in ME is better - encephalomyelitis or encephalopathy. There are good arguments on both sides, but no argument is strong enough that it should cause the name change effort to fail. Recognizing this was an issue, the Board eliminated the argument altogether by proposing the use of the acronym. As in the NCAB’s original recommendation, ‘CFS’ is included in the proposed acronym for both transitional and logistical reasons - primarily to prevent harming patients involved in disability and medical insurance issues and to provide continuity in the research area. Over time, the CFS portion of the acronym will be eliminated. It should be noted that this does not set a precedent, as the largest organization of CFS healthcare professionals in the world changed its name earlier this year to IACFS/ME - without differentiation or discrimination as to which form of ME is better. The Road Ahead – Making It Happen The Campaign is still in the education and advocacy phase and lots of things are happening behind the scenes. Perhaps the most important effort at this time is the formation of the FNIC - the Fair Name Implementation Committee. The FNIC is a highly dedicated and respected group of patient leaders and advocates, doctors, celebrities and other VIP’s, founded with one goal in mind : to change the name. The Committee’s membership presently stands at 22 and I think you will be impressed to see the names on the roster. These are the people who can make this thing happen. Although the Committee may eventually choose to work on another important goal - refining the Fukuda case definition of CFS now used in the U.S. to make it consistent with the better, more stringent ME definition used in other countries such as Canada (where the disease is also now called 'ME/CFS') - the Committee’s first and most important job is to change the name. Name Change Website – Campaign Central Campaign for a Fair Name will launch its own website in January 2008 - and the site will be the name change effort’s center of action; all news and information will be posted and updated there regularly for all to see. The site will promote the use of ME/CFS, but patients will have the final word in a vote to accept or reject ME/CFS that will be held in May 2008. Patients did not have a chance to have their voices heard when the disease was named in 1988, so it is imperative that their voices be heard now. I believe this is the most critical part of the Campaign. Enlisting Patient Volunteers and Support There is much work ahead : contacting over 450 volunteers who asked to participate in the Campaign; establishing voting procedures; finding an independent company to handle the vote (such as Harris Polls); establishing a petition to gather signatures of name change proponents - just to name a few. But you can mark my words : we are well on our way to losing the taint of ‘chronic fatigue syndrome’ and erasing it from use forever. One last thing - and this is important : the campaign needs your support. Without it, patients will continue to be disparaged and belittled by ‘chronic fatigue syndrome’. Please volunteer a little of your time to help us make this thing a reality. E-mail us at : CFSnameChange@prohealth.com. Working together, we can accomplish anything. Wishing you the dignity of a fair name, Rich Carson, Patient advocate Cfr. : - http://www.chronicfatiguesupport.com/library/showarticle.cfm/ID/8454/t/CFIDS_FM - http://www.immunesupport.com/library/showarticle.cfm/ID/8454/t/CFIDS_FM - http://www.immunesupport.com/library/showarticle.cfm/id/8454
Nancy Klimas, MD - An Internationally-Respected ME/CFS Researcher Driving Change Karen Lee Richards – ChronicFatigue.com, 01-27-2008 The author Karen Lee Richards is the Expert Patient, specializing in Fibromyalgia and Chronic Fatigue Syndrome, for HealthCentral's ChronicPainConnection (cfr. : http://www.chronicpainconnection.com -). Karen is co-founder with Lynne Matallana of the National Fibromyalgia Association (NFA) and was Executive Editor of Fibromyalgia AWARE, the first magazine devoted to Fibromyalgia and other invisible illnesses. Cfr. : "Karen Lee Richards - Making a difference in the lives of those living with Fibromyalgia and Chronic Fatigue Syndrome". .../... Importance of Changing the Name – And Why Now Dr. Klimas feels the name change effort is worthwhile because it will give the illness more respect from physicians and from the public. “I think 'chronic fatigue syndrome' has been a damaging name to the patients,“ she said : “It’s misleading. The illness is not really primarily about the symptom of fatigue. Fatigue is a word that can easily be dismissed. The severity of the illness is such that it cannot be dismissed.” Addressing the timing of the name change effort, she said : “I think that using the ME in with the CFS actually should have been done years and years ago. It was a simple thing that was asked by many patient groups, and it should have happened. I think the reason it’s possible to happen now is that the attitude of people in the U.S. has shifted more to a global rather than a national kind of base. I think, truthfully, 15 years ago we were more parochial and now we are seeing the world without its borders. Having said that, you realize that most of the world uses ME rather extensively to describe the same illness. That and that alone is a good enough reason to put the ME/CFS together.” In the end, Dr. Klimas thinks that ME/CFS will serve as an umbrella under which there will be subgroups that have more definitive pathogenically defined names. Best of all, she believes those subgroup classifications will help physicians direct their patients into the appropriate clinical trials and ultimately successful therapy .../... Cfr. : http://www.chronicfatiguesupport.com/library/showarticle.cfm/id/8653
Rich Carson Talks about Treatment, Research and Righting a Wrong - Live Chat April 17, 2007 ChronicFatiguesupport.com, 04-21-2007 Introduction : Hello, my name is Rich Carson and welcome to ProHealth’s first online chat in a long, long time. Q : Who is Rich Carson ? Rich : I am a Chronic Fatigue Syndrome patient, the founder of ProHealth, a volunteer CFS and Fibromyalgia fund raiser and former support group leader. Presently I’m organizing the Campaign for a Fair Name - the effort to change the name ‘Chronic Fatigue Syndrome’ to one that does not trivialize this serious illness. Q : What symptoms did you first have when you became ill ? Rich : I had acute onset, with severe sore throat, night sweats, fever, fatigue, flu-like symptoms and elevated antibodies to EBV and CMV. The underlying illness never went away. Q : I wonder about the "myalgic" part of the name ME, as in Myalgic Encephalopathy. A small percentage of people don't have pain at all and many sufferers seem to have only minor pain. I already have good doctors and am being treated well, but I wonder if other general internists would dismiss me as not really having the disease since my pain is minimal. Rich : That's a question I also had, because like you, muscle pain is not a problem for me. However, at the Name Change Advisory Boardmeeting in January, the researchers agreed that ‘myalgia’ or ‘myalgic’ was describing the general achiness people get when they have the flu - not the type of pain one would experience with FM or a muscle injury. Q : Where you ever disabled because of this illness ? Meaning in the eyes of Social Security Disability ? Rich: I was totally disabled for 17 years and Social Security Disability approved my case the first time I applied. That was in July of 1987 and at that time the term ‘Chronic Fatigue Syndrome’ did not exist. Actually, back then the disease was usually called 'CEBV' - for 'Chronic Epstein-Barr Virus' - but I was so sick that I also had ‘organic brain syndrome’. This was diagnosed by psychometric testing, SPECT scan, MRI brain scan and BEAM scans ['brain electron activity mapping']. Q : In terms of CFS, what treatment have you found to be most beneficial ? I am currently taking vitamins & supplements. Rich : Transfer factor been immensely helpful, as well as specific nutritional supplements, stress reduction, controlled exercise, adhering to a very healthy diet and daily vegetable juicing. Mercury removal and detoxification was also very helpful, and is an ongoing process. Q : Which transfer factor did you use and how did you choose ? Rich : I take 5 or 6 different types of transfer factor, mostly because I'm not exactly sure what pathogens might be lurking and causing symptoms at any time. For example, researchers have found that CFS patients suffer from reactivation of many pathogens, including EBV, CMV and Human Herpesvirus 6 (HHV-6) A and B. Consequently, I take transfer factor that is specific to all of those. I also take transfer factor that could be of interest to anybody looking at Chlamydia pneumoniae, the various mycoplasmas, Candida [yeast infection] and even Lyme disease. I cover all my bases. Q : Do you believe there is any connection between FM, CFS and MS ? Rich : I have no doubt that there is a connection between FM and CFS. And researchers believe that in some cases MS and CFS share a common pathogenic initiator – HHV-6. Q : What do you think of the theory of methylation cycle problems in CFS ? Rich : This is a fabulous theory (what Richard Van Konynenburg, PhD, described as “the glutathione depletion-methylation cycle block hypothesis for the pathogenesis of CFS” at the IACFS conference in January) and there is much research that supports it. Researchers and patients have been buzzing about this topic for quite some time on ProHealth's CFS and FM bulletin boards and patients are reporting very beneficial results. ProHealth is in the process of formulating a product that should be a perfect fit for addressing this situation. Q : Did you and do you have sleep issues ? I notice that this is a big problem for most of us - getting into the deep sleep stage. Rich : Sleep issues are huge when it comes to CFS and FM and I've had more than my fair share. In fact, I would be tempted to say that if somebody doesn't have sleep issues they probably don't have CFS or FM. Sleep issues range from difficulty falling asleep to inappropriate early morning awakening, hypersomnia and delayed sleep phase disorder. I have a supplement regimen that I use nightly that works like a charm. Q : You mentioned a night time regimen to help sleep. Could you elaborate a little ? Rich : My nighttime regimen consists of taking the following supplements about one hour before bed : valerian; lemon balm; GABA; melatonin; ziziphus; and my all-time favorite for sleep, ZMA. I like ZMA because I believe it strengthens my body's foundation by providing two nutrients that are of interest to CFS patients : a very bioavailable form of magnesium - almost always low in CFS patients - and zinc, the most important mineral for immune function. Q : Many patients stay away from exercise because of the pain and fatigue. Do you find that some form of mild exercise helps with these symptoms ? Rich : Exercise is by far the most dangerous yet potentially most helpful therapy available to most patients. If you over-exercise or exercise when your symptoms are too severe, you'll relapse. Not exercising at all is guaranteed to contribute to a worsening of your symptoms over the long term. Unfortunately this is a long-term disease, so you need to devise an exercise program that works for you. First, think of exercise as movement therapy and not necessarily vigorous activities such as running, bicycling, weights, sports or even walking. Our heart rate is the perfect guide to exercising appropriately without overdoing it - if your heart rate is too high, you will relapse. I use a heart rate monitor with an audible alarm to warn me if I'm about ready to overdo it. A heart rate monitor is inexpensive and is the perfect 'invisible coach'. Q : How do you feel about use of alternative therapies such as meditation, yoga, relaxation breathing, acupuncture ? Rich : Hi Sharon. First let me thank you for the brilliant work you do on this bulletin board. The same is true for Carlene, Shirl and Mikie, our other dedicated volunteer bulletin board moderators. Meditation, yoga, massage therapy, hydrotherapy, acupuncture can all be extremely helpful in any self-treatment plan. And importantly, keeping up to date on CFS and FM research and treatment strategies is empowering and a great psychological benefit. Q : Rich, have you been approached about making a documentary about your journey with CFS ? Rich : I would only be interested in making a documentary if the thrust of the film was about the pain, suffering and discrimination that all patients face on a daily basis. In other words, the story shouldn't be about me, it should be about the disease that has taken so much away from all of us. Q : What is the status on the name change ? What progress are we making ? What needs to be done ? Rich: The name change effort, which we call "Campaign for a Fair Name" is the most important project on my long list of things to do. Phase 1 of the campaign involved asking patients what they thought about the present name. They overwhelmingly expressed a desire for a name that does not discriminate by labeling the disease ‘fatigue'. This phase of the campaign concluded with the formation of a group of world-class CFS researchers, who met to advise patients on an appropriate new name. These researchers - whose combined CFS research exceeds 150 years - were officially called the 'Name Change Advisory Board' though patients refer to them as the CFS 'Dream Team'. The board met in person in Florida in mid-January to debate whether CFS should be changed and if so what name should replace it. We are presently in Phase 2 of the Campaign for a Fair Name, which is a period of education and familiarization with the board-recommended name : 'ME-CFS'. As part of that, we’ll soon announce the members of another 'Dream Team' – this one a committee of respected CFS patients who are founders and directors of major support groups, authors of top-selling books on CFS, well-known advocates who are considered thought leaders in the CFS movement and several leading CFS clinicians. Incidentally, this committee will be called the 'New Name Implementation Committee' or 'NNIC' Q : Thank you, Rich, for all the hard work you and your team have done. What is the best way for Individuals to get involved ? What can we do to build awareness in our own community ? Rich : One way to make a difference is to get involved in the CFS Name Change effort. Another great way is to become a support group leader and work with CFS and FM patients to help make their lives better. I am going to be announcing the members of the NNIC in the next several weeks. As you will see, these patient advocates and CFS researchers represent the most influential and respected members of the CFS community. Hopefully you and others will get involved in the campaign by starting to use the new name : 'ME-CFS' instead of ‘Chronic Fatigue Syndrome’. If everybody does this, the name will change almost overnight. The campaign’s success will depend on you. Now in closing, I want to thank you all for this opportunity to chat with you. For me, working with patients is a privilege and is in fact a major part of my own therapy. Without ProHealth I wouldn't have the vehicle to do this and an important part of my life would disappear. Changing the name 'Chronic Fatigue Syndrome' is by far the most important endeavor I've ever undertaken. Strangely, however, it is also the goal that I feel most confident of achieving. And thank you very much for the heartwarming support you have so generously expressed. Working together, patients will succeed in righting wrongs that have caused us anguish. Cfr. : http://www.chronicfatiguesupport.com/library/showarticle.cfm/id/7936
Why 'ME/CFS' ? - A perfect name isn't necessary, but a respectable name is essential Karen Lee Richards – ChronicFatigue.com, 07-10-2007 Karen Lee Richards is the Expert Patient, specializing in Fibromyalgia and Chronic Fatigue Syndrome, for HealthCentral's ChronicPainConnection (cfr. : http://www.chronicpainconnection.com -). Karen is co-founder with Lynne Matallana of the National Fibromyalgia Association (NFA) and was its vice-president for eight years. From 2002 through 2005 she was Executive Editor of Fibromyalgia AWARE, the first magazine devoted to Fibromyalgia and other invisible illnesses. Cfr. : "Karen Lee Richards - Making a difference in the lives of those living with Fibromyalgia and Chronic Fatigue Syndrome". A perfect name isn’t necessary, but a respectable name is essential Since early February 2007 when the CFS Name Change Advisory Board announced its decision to call for changing 'CFS' to 'ME/CFS' (and later, when they finally decided the 'ME' should stand for either 'myalgic encephalopathy' or 'myalgic encephalomyelitis'), there has been a flurry of comments, both pro and con. Acknowledging that there is no perfect name, in my opinion they made the best possible choice. Although I was not at the board meeting, I’d like to offer what I think was the rationale behind the selection of 'ME/CFS'. Why Change the Name ? The first question to consider is why do most of us want a name change. It’s because the name ‘chronic fatigue syndrome’ trivializes a serious illness by naming it for one of its symptoms, namely fatigue - a symptom most people experience at some time in their lives. Since 'CFS' it is not a medical-sounding name, family members, friends and even doctors tend not to take it seriously. While we all want the best name possible, we have to be realistic. If we hold out for a name that adequately incorporates every facet and variation of the illness, we will be waiting many more years for an acceptable option. On the other hand, if we agree on a name that is not demeaning yet has a reasonable chance of being adopted, we can move on and focus our efforts on raising awareness and increasing research. Why 'M.E.' ? Some people from countries outside the U.S. have expressed confusion and disappointment at the choice of 'ME' because that is what’s already being used in their country (it should be noted that the Name Change Campaign was aimed at the United States, which perhaps should have been made clearer in the beginning). The fact that 'ME' is used around the world is precisely why it is a good choice. ME has been referenced in medical literature since 1956 and is still widely used in most of the world today. The history behind ME and its worldwide use will improve the likelihood of its acceptance by healthcare professionals. Why Not a More Accurate Name ? A few patients have expressed concern that the term 'ME' doesn’t address specific aspects of the disorder, such as immune system dysfunction. As research progresses, it is becoming apparent there are a number of subgroups under the larger umbrella of 'ME/CFS'. Until the etiology of all of these variations is determined, it is impossible to come up with a name that would accurately define all facets of the illness. The fact is many diseases have been named before their etiology was known. Malaria actually means ‘bad air’ and got its name because it was originally thought the disease was caused by breathing swamp gasses. And cancer literally means ‘crab’. It is thought the name probably came from the appearance of the cut surface of a malignant tumor. So, it’s not essential for the name of an illness to describe it in detail. What is important is that the illness be taken seriously. A medical-sounding name like 'myalgic encephalopathy' or 'myalgic encephalomyelitis' has a better chance of being taken seriously than 'chronic fatigue syndrome', which just sounds like you’re tired. A perfect name isn’t necessary but a respectable name is essential. Another important fact to know as we advocate for a name change is that there is precedent for changing a demeaning disease name to something more acceptable and respectful. 'Multiple sclerosis' was originally known as 'hysterical paralysis'; 'gay-related immune deficiency' was changed to 'AIDS' ('acquired immune deficiency syndrome'); 'Mongolian idiot syndrome' became 'Down syndrome' and 'leprosy' was renamed 'Hansen’s disease'. Why Keep 'CFS' ? Given that 'CFS' is such a trivializing, demeaning name, you may be asking why it is being kept as part of the new name. The main reason is for transitional purposes. CFS is listed in the ICD-9-CM codes. (ICD-9-CM stands for International Classification of Diseases, Ninth Revision, Clinical Modification). This is the official system used to assign codes to diagnoses and procedures in the United States and is based on the World Health Organization’s classifications. One of the reasons for leaving 'CFS' as part of the new name is that the same ICD-9-CM code can still be used. Changing the name completely and suddenly dropping the name recognized in the ICD-9-CM codes could potentially cause patients serious problems with insurance and disability claims. Changes to the code do not come easily and usually take many years, but hopefully as 'ME/CFS' gains acceptance, the code can be revised and the 'CFS' can finally be dropped. In the meantime, using the combined form of 'ME/CFS' will make for a smoother transition and less confusion than might be caused by a newly created name. The Choice is Ours A complete transition from 'CFS' to 'ME' will take time - probably several years. But the sooner we start, the sooner we’ll reach our goal. We are making definite progress. In years past, the name change efforts have been largely patient-driven. While many doctors and even some bureaucrats acknowledged the inadequacy of the name, most were unwilling to make a change. Now a group of top experts in the field have come together, agreed the time is right and called for the name change. Now it’s up to us. We can choose to hang on to our idealism and wait for the perfect name or we can get behind the name that has been recommended and has a reasonable chance of being adopted. The more united we are as patients, the more seriously we will be taken. Change is difficult for most people, but if we work together and persist, change will come. Cfr. : - http://www.immunesupport.com/library/showarticle.cfm/ID/7774/t/CFIDS_FM - http://www.chronicfatiguesupport.com/library/showarticle.cfm/id/7774
Gezondheidsplein.nl Goedgekeurd door N. van Hasselt, arts
Infecties worden veroorzaakt door (besmettelijke) micro-organismen – kleine, voor het oog onzichtbare organismen – die zich in het lichaam nestelen en vermenigvuldigen. Bacteriën, virussen en sommige schimmels zijn micro-organismen.
Op ons lichaam, in de luchtwegen en darmen leven micro-organismen, die onder normale omstandigheden niet schadelijk zijn. Over de hele wereld komen infecties voor. Tot nu toe bestaat er voor de meeste virale infecties geen doeltreffend geneesmiddel. Bacteriële infecties kunnen worden behandeld met antibiotica. Veel organismen zijn besmettelijk, dat wil zeggen dat zij zich verspreiden tussen mensen die in nauw contact met elkaar leven.
Zijn besmettelijke micro-organismen eenmaal het lichaam binnengedrongen dan duurt het enige tijd voordat ze talrijk genoeg zijn om symptomen te veroorzaken. De symptomen van een infectie worden niet alleen veroorzaakt door een beschadiging van lichaamsweefsel door micro-organismen, maar ook door de eigen afweermechanismen van het lichaam. De witte bloedlichaampjes zullen proberen de binnengedrongen micro-organismen te verzwelgen of te vernietigen. Sommige cellen maken speciale antistoffen aan tegen de micro-organismen.
De symptomen, die een infectie veroorzaakt, zijn ook afhankelijk van de plaats waar de infectie zich bevindt, de uitgebreidheid van de infectie en het soort micro-organisme. Afhankelijk van de ernst en de behandelmogelijkheden kan een infectie zeer lichte verschijnselen van zich niet prettig voelen veroorzaken, tot juist extreem ziek zijn, met hoge koorts, rillingen en/of verwardheid. Het opnemen van de temperatuur kan belangrijk zijn ter beoordeling van de ernst van de infectie.
Virale infecties zoals griep en verkoudheid worden vaak met Asperine- of Paracetamol-tabletten behandeld, maar daardoor beïnvloedt men zijn weerstand negatief. Alle andere infecties kunnen soms met antibiotica behandeld worden.