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    14-12-2008
    Klik hier om een link te hebben waarmee u dit artikel later terug kunt lezen.Doe het vandaag nog - Veerle Derammelaere - Een straffe madam !
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    Veerle Derammelaere

    Een straffe madam !
     
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    14-12-2008 om 14:09 geschreven door Jules

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    Klik hier om een link te hebben waarmee u dit artikel later terug kunt lezen.Wat is het Omnio-statuut en wie kan er gebruik van maken ?
    Klik op de afbeelding om de link te volgen  























    Wat is het Omnio-statuut
    en
    wie kan er gebruik van maken ?

    Hulporganisatie.be
     Bron : Landsbond van Liberale Mutualiteiten -
    http://www.mut400.be -


    Via het Omnio-statuut krijg je een verhoogde verzekeringstegemoetkoming, de sociale maximumfactuur en andere belangrijke voordelen zoals vermindering bij het openbaar vervoer.

    Door de dalende koopkracht en gestegen werkloosheid doen meer gezinnen een beroep op het Omnio-statuut.
    In één jaar tijd hebben de Liberale Mutualiteiten maar liefst een verdubbeling van het aantal gezinnen dat recht heeft op het Omnio-statuut genoteerd.

    Van 3.191 geregistreerde gezinnen met dergelijke voordelen in 2007, steeg dit aantal tot 7.112 in 2008.

    Deze opvallende stijging van het aantal personen met een beschermd statuut in de ziekteverzekering komt allicht niet toevallig in tijden van dalende koopkracht, aangezien het Omnio-statuut enkel wordt toegekend aan gezinnen met een bescheiden inkomen”, zegt Lien Doise van de Landsbond van Liberale Mutualiteiten : “Deze groep wordt zich waarschijnlijk ook meer bewust van zijn sociale rechten in deze financieel onzekere periode. Voor wie een bescheiden inkomen heeft, komt de dalende koopkracht dan ook extra hard aan. Een verlichting van de medische kosten via het Omnio-statuut of de sociale maximumfactuur is dan ook meer dan welkom.


    Enkele voorbeelden

    Het Omnio-statuut dat al vanaf juli vorig jaar bestaat, wordt toegekend aan gezinnen die op 1 januari samenwonen en die in het voorgaande jaar over bescheiden inkomsten beschikten (zelfde grensbedrag als voor het R.V.V.-statuut = op basis van een hoedanigheid van gepensioneerde, invalide, ...).

    Het OMNIO-statuut geeft dezelfde rechten als het R.V.V.-statuut met name een verhoogde verzekeringstegemoetkoming (vb.raadpleging huisarts kost € 21,53 : gewone terugbetaling = € 16,02 maar verhoogde terugbetaling = € 20,11) , een automatisch sociale maximum factuur (MAF) (remgeld boven € 450 wordt volledig terugbetaald), een vermindering bij openbaar vervoer enz.

    Vb1. een gezinnetje samengesteld op 1 januari 2008 uit mama en 2 kindjes met bruto-belastbare inkomsten in 2007 die lager waren dan € 18.558,31 = 13.543,71 voor de mama + 2.507,30 per kind, heeft recht op het OMNIO-statuut.

    Vb2. een alleenstaande werkloze, jonger dan 50 jaar, heeft in 2007 € 12.000 werkloosheid gekregen.
    Ook hij heeft recht op het OMNIO-statuut.

    Zowel alleenstaande ouders met kinderen als alleenstaanden, ouderen en jongeren of tweepersoonsgezinnen met een laag inkomen kunnen hiervoor in aanmerking komen.

    Cfr. : http://www.hulporganisaties.be/pages/details.asp?lng=NL&Id=3683

    Lees ook :

    OMNIO - Veel gestelde vragen (FAQ)
    Cfr. : http://www.riziv.fgov.be/secure/nl/medical_cost/general/omnio/faq/index.htm




    14-12-2008 om 00:22 geschreven door Jules

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    13-12-2008
    Klik hier om een link te hebben waarmee u dit artikel later terug kunt lezen.Chronisch zieken zijn nog niet afgeschreven !
    Klik op de afbeelding om de link te volgen


    Chronisch zieken
    zijn nog niet afgeschreven !


    Hulporganisaties.be

    Leven met een chronische ziekte is niet eenvoudig.
    Door het ziek zijn en de pijn ontbreekt vaak de energie om voor de eigen belangen op te komen.

    Het is duidelijk dat er nog veel te weinig maatschappelijke aandacht is voor de problemen van chronisch zieke mensen.
    Ariadne – cfr. :
    http://www.ziekenzorg.be/cmz/nl/100/ariadne/index.jsp -, de werking voor chronisch zieke mensen tussen 25 en 65 jaar van Ziekenzorg, wil hierin verandering brengen en lanceert daarom een nieuwe website : 'Niet Afgeschreven.be' (cfr. : http://www.hulporganisaties.be/pages/Goto/?URL=http://www.nietafgeschreven.be -).


    Problemen van mensen die chronisch ziek zijn

    Doel van deze website is om in het kader van belangenbehartiging chronisch zieke mensen het woord te geven.
    Zij zullen er hun verhaal kwijt kunnen op een manier waarbij zij zich het beste voelen.

    Uit deze verhalen zal ook duidelijk worden wat de struikelblokken zijn in de wetgeving, de medische wereld, ... waarmee zij regelmatig geconfronteerd worden :

    1. Zo is er de onoverzichtelijke papierberg waar chronisch zieken tegen opbotsen om hun rechten te bekomen.

    2. De uitkeringen van chronisch zieke mensen zijn niet welvaartsvast.
      Een indexverhoging op een kleine uitkering heeft totaal geen effect.

    3. Om maar niet te spreken van de controle-onderzoeken en het toekennen van puntenscores waarbij er vaak totale afhankelijkheid en willekeur heerst.

    Ziekenzorg CM wil daarom samen met mensen met een chronische ziekte aan belangenbehartiging werken rond thema's die hen nauw aan het hart liggen.

    Het uitgangspunt daarbij is steeds de ervaring van langdurig zieke mensen zelf.
    Ziekenzorg steunt op de leefwereld, levensverhalen en de ervaringsdeskundigheid van de deelnemers.

    De keuze voor een website is zeer bewust genomen.
    Dit hedendaagse medium kent een breed bereik bij chronisch zieke mensen.
    Het web is voor velen onder hen de (enige) deur naar de buitenwereld.


    Cfr. : http://www.hulporganisaties.be/pages/details.asp?lng=NL&Id=3678




    Met welke problemen hebben chronisch zieken te maken ?

    Versie 1.5, 8 december 2008 - © GGD Hart voor Brabant, 's-Hertogenbosch


    Chronisch zieken voelen zich beperkt in lichamelijk functioneren

    Mensen met langdurige lichamelijke beperkingen ervaren hun lichamelijk functioneren een stuk slechter dan anderen; ze voelen zich sterk belemmerd in het uitvoeren van dagelijkse taken en bereiken minder dan ze zouden willen.
    Daarnaast ervaren ze meer pijn en vermoeidheid dan mensen zonder beperkingen.
    Daartegenover staat dat mensen met een langdurige beperking zich geestelijk niet slechter voelen dan anderen.

    Met name bewegingsbeperkingen en ADL-beperkingen (ADL = activiteiten van het dagelijks leven) belemmeren het ervaren dagelijkse functioneren.
    Daarnaast ervaren beperkten uit lage sociaal-economische klassen en beperkte ouderen hun functioneren vaak als slecht (Van Campen, 2006).

    Gezond en wel met een beperking
    Crétien van Campen, 10-05-2006 – Sociaal en Cultureel Planbureau (SCP) – ISBN : 9037702546
    Mensen met langdurige lichamelijke beperkingen (dat wil zeggen : bewegings- en/of zintuiglijke beperkingen) vormen een grote en groeiende groep in de Nederlandse samenleving.
    De overheid voert een beleid waarbij deze mensen als volwaardige burgers aan de samenleving kunnen meedoen met als doel de kwaliteit van hun leven te verbeteren.
    Hoe ervaren mensen met langdurige lichamelijke beperkingen hun kwaliteit van leven ?
    Deze is beter dan vaak wordt gedacht; zeker op geestelijk vlak zijn de verschillen met de gemiddelde burger klein.
    De achterstanden ten opzichte van burgers zonder beperkingen variëren echter naar type, duur en ernst van de beperkingen.
    In de laatste tien jaar zijn de achterstanden min of meer stabiel gebleven.
    Welke factoren bepalen deze achterstanden ?
    Naast de beperking zelf zijn ook sociale en economische factoren van invloed op de ervaren kwaliteit van leven.
    Een opmerkelijke bevinding uit het onderzoek is dat - in tegenstelling tot wat vaak wordt gedacht - een verhoging van de maatschappelijke participatie niet direct leidt tot een verbetering van de ervaren kwaliteit van leven van mensen met langdurige lichamelijke beperkingen.
    Cfr. :
    - Persbericht :
    http://www.scp.nl/publicaties/persberichten/9037702546.shtml
    -
    http://www.scp.nl/publicaties/boeken/9037702546.shtml
    -
    http://www.scp.nl/publicaties/boeken/9037702546/Gezond_en_wel_met_een_beperking-Omslag_hoge_resolutie.pdf
    -
    http://www.scp.nl/publicaties/boeken/9037702546/Gezond_en_wel_met_een_beperking.pdf 
    - Themasite Gezondheid en Zorg :
    http://www.scp.nl/zorg/


    Zorggebruik chronisch zieken hoog

    92% van de mensen met een chronische ziekte bezoekt jaarlijks minstens één keer de huisarts tegenover driekwart (77%) van de algemene bevolking.
    Gemiddeld gaan mensen met een chronische ziekte zes keer per jaar naar hun huisarts.
    Dat is veel vaker dan de doorsnee bevolking, die gaat drie a vier keer per jaar.
    Het maakt niet uit hoe oud men is, welke opleiding men heeft, wat voor aandoening men heeft of hoe lang men die heeft, en hoeveel lichamelijke beperkingen men heeft; men gaat even vaak naar de huisarts.
    Alleen als men meerdere aandoeningen tegelijk heeft, bezoekt men vaker een huisarts in vergelijking met mensen met één aandoening.

    74% van de mensen met een chronische aandoening bezoekt tenminste één keer per jaar de specialist tegenover 40% van de algemene bevolking.
    Gemiddeld gaan mensen met een chronische aandoening vijf keer per jaar naar een specialist.
    Het vaakst (gemiddeld zeven keer) gaan mensen met een arbeidsongeschiktheidsuitkering en mensen met meerdere aandoeningen.

    Een kwart van de mensen met een chronische aandoening gaat naar een fysiotherapeut in vergelijking met 15% van de gehele bevolking.
    Vooral chronisch zieken met lichamelijke beperkingen en mensen met een chronische aandoening van het bewegingsapparaat, bezoeken de fysiotherapeut (Rijken, 2001).

    Chronisch zieken : kort en bondig
    Mieke Rijken, programmaleider chronisch zieken, Nederlands instituut voor onderzoek van de gezondheidszorg (Nivel), Utrecht, 2001
    Cfr. :
    http://www.nivel.nl


    Chronisch zieken hebben zwakkere financiële positie

    Mensen met een chronische ziekte hebben een zwakkere financiële positie dan mensen zonder chronische ziekte.
    Enerzijds komt dit doordat hun inkomen lager is omdat ze niet (veel) kunnen werken en vaak een uitkering hebben.
    Van de mensen met een chronische aandoening heeft 41% een betaalde baan, in vergelijking met 66% van de algemene bevolking.
    Anderzijds brengt hun aandoening meestal extra kosten met zich mee.

    Ze hebben dus in vergelijking met de algemene Nederlandse bevolking :

    • een lager netto-inkomen

    • hogere ziekte-gerelateerde kosten.

    (Rijken, 2001)


    Chronisch zieken hebben een lagere maatschappelijke participatie

    Chronische aandoeningen verminderen de deelname aan het maatschappelijke leven, door de functionele beperkingen die chronisch zieken als gevolg van hun ziekte ondervinden.
    Zo belemmeren bijvoorbeeld pijn, het niet goed kunnen lopen of snel moe worden een normale deelname aan de samenleving.
    Maar maatschappelijke participatie is wel heel belangrijk omdat dit mensen allerlei mogelijkheden biedt, zoals productiviteit, zelfontplooiing, betrokkenheid en sociaal contact.
    Daarnaast heeft participatie ook een maatschappelijk nut, bijvoorbeeld door het verrichten van betaalde arbeid, vrijwilligerswerk of het verlenen van informele hulp.
    De meeste ziekten vormen vooral een belemmering voor het verrichten van betaalde arbeid en vrijwilligerswerk (cfr. tabel 1), de persoonlijke betrokkenheid bij de samenleving lijkt veel minder aangetast.
    Ook het geven van informele hulp lijkt niet verminderd bij mensen met een ziekte, mogelijk door de verminderde arbeidsparticipatie van chronisch zieken; er is simpelweg meer tijd voor het verlenen van informele hulp.

    Uit een vergelijkbaar onderzoek uitgevoerd onder ouderen blijkt dat maatschappelijke participatie het meest is aangetast bij mensen met een psychische aandoening, zoals een depressie, angststoornis of cognitieve stoornis (Hoeymans et al., 2005b).

    Gezond actief - De relatie tussen ziekten, beperkingen en maatschappelijke participatie onder Nederlandse ouderen (Healthy and active - The relationship between disease, disability and social participation among elderly in the Netherlands)
    Hoeymans N, Timmermans JM, Klerk MMY de, Boer AH de, Deeg DJH, Poppelaars JL, Thissen F, Droogleever Fortuijn JC, Hollander AEM de - Rijksinstituut voor Volksgezondheid en Milieu (RIVM) - Bilthoven - Nederland - www.rivm.nl - RIVM-rapport 270054001 - SCP-Den Haag ; VU-MC-Amsterdam ; UvA/afd Geografie, Planologie en Internationale Ontwikkelingstudies, 10-10-2005
    English Abstract
    The Health Council of the Netherlands asked the National Institute for Public Health and the Environment to examine the relationship between diseases, disabilities and social participation.
    The analyses leave little room for doubt: chronic diseases reduce social participation substantially.
    This is mainly due to disabilities that people with chronic diseases experience.
    Volunteering in jobs or giving informal care, for example, are strongly reduced in people with diseases that effect mobility, such as stroke or musculoskeletal diseases.
    In most cases, however, more personal forms of participation have not diminished.
    People with mental diseases experience the most participation problems without exception, even including social contacts.
    Epidemiological prognoses show an increase of chronic diseases in the future and thus a reduced potential for participation.
    This increase in chronic diseases, however, does not seem to be accompanied by an equal increase in functional disabilities.
    Evidently, we are succeeding more and more in reducing disabilities.
    If this trend continues, the possibilities of social participation for the elderly and chronically ill will increase at the same time.
    Three studies - the 'Amenities and Social Services Utilization Survey' (AVO), the European Study on Adult Well-being (ESAW) and the Longitudinal Aging Study Amsterdam (LASA)- supplied us with information on people of 55 or older.
    These studies contain information on both diseases and social participation.
    Social participation is defined as personal involvement with society (as recreational or cultural activities) and participation with a direct benefit for society (as paid jobs and volunteer work).
    Rapport in het kort
    Op verzoek van de Gezondheidsraad heeft het RIVM onderzoek gedaan naar de samenhang tussen ziekten, beperkingen en maatschappelijke participatie.
    De uitkomsten van dit onderzoek laten er weinig twijfel over bestaan dat ziekte de deelname aan het maatschappelijke leven flink vermindert.
    Dit hangt vooral samen met functionele beperkingen die gepaard gaan met ziekten.
    Zo neemt het verrichten van vrijwilligerswerk sterk af bij die aandoeningen die de mobiliteit aantasten, zoals een beroerte of aandoening van het bewegingsapparaat.
    Vaak gaat echter de persoonlijke betrokkenheid bij de samenleving wel door.
    Mensen met een psychische aandoening participeren het minst.
    Dit geldt bovendien voor alle vormen van participatie, ook voor bijvoorbeeld het onderhouden van contacten.
    Epidemiologische verkenningen laten een toename zien van chronische ziekten, waarmee in principe ook mogelijkheden voor participatie verminderen.
    Deze toename van aandoeningen lijkt echter niet iin op iin gepaard te gaan met een toename van beperkingen.
    Kennelijk slaagt men er steeds beter in beperkingen terug te dringen.
    Als deze trend doorzet, verbeteren tegelijkertijd de participatiemogelijkheden van ouderen en chronisch zieken.
    Voor dit onderzoek is gebruik gemaakt van drie onderzoeken bij ouderen van 55 jaar en ouder : het 'Aanvullend Voorzieningengebruik Onderzoek' (AVO) van het Sociaal en Cultureel Planbureau – cfr. :
    http://www.scp.nl/miss/avo.htm -, de 'European Study of Adult Well-being' (ESAW) van de Universiteit van Amsterdam (UvA) – cfr. : http://esaw.bangor.ac.uk// - en de 'Longitudinal Ageing Study Amsterdam' (LASA) van de Vrije Universiteit Amsterdam (VU) – cfr. : http://www.lasa-vu.nl/ -.
    Deze onderzoeken bevatten zowel informatie over ziekten en beperkingen als over maatschappelijke participatie.
    Bij maatschappelijke participatie gaat het om persoonlijke betrokkenheid bij de samenleving (zoals recreatieve en culturele activiteiten) en om participatie met een direct maatschappelijk nut (zoals betaalde arbeid en vrijwiligerswerk).
    Cfr. :
    http://rivm.openrepository.com/rivm/handle/10029/7281

    Dit geldt bovendien voor alle vormen van participatie, ook voor bijvoorbeeld het onderhouden van contacten.
    Mensen die lijden aan cognitieve stoornissen of die depressief of angstig zijn, zijn kennelijk zodanig aangetast in hun persoonlijke en cognitieve mogelijkheden dat het voor hen extra moeilijk is om mee te doen aan de ‘boze’ buitenwereld.

    Tabel 1. - Relatie tussen aanwezigheid van één of meer ziekten en participatie bij de bevolking van 25 jaar en ouder
    (Bron : AVO, 2003, gegevens bewerkt door RIVM)
    Participatie Participatie          zonder ziekte (%)          mét ziekte a (%)
    Betaalde arbeid                                        70                                42
    Vrijwillgerwerk                                          23                                17
    Informele hulp                                          13                                 15
    Lidmaatschap vereniging                           67                                 61
    Culturele participatie                                 42                                 32
    Recreatieve participatie                             52                                 52

    a / 'Ziekte' = hartziekten, ziekten van het zenuwstelsel, ziekten van het bewegingsapparaat, astma en COPD, kanker, beroerte, diabetes mellitus en gevolgen van een ongeval.

    Ook chronisch zieken zelf geven aan dat ze participatieproblemen ondervinden.
    Zo vindt ruim 40% dat zij maatschappelijk niet zo kunnen functioneren als zij zouden willen.
    Problemen op het gebied van werk ervaren ze als het meest ernstig.
    Ondanks diverse maatregelen van de overheid om de arbeidsdeelname van chronisch zieken te ondersteunen, is het percentage dat betaald of vrijwilligerswerk verricht sinds 2001 niet gestegen (Heijmans et al., 2005).

    Overigens gaat de relatie tussen participatie, inkomen en gezondheid twee kanten op.
    Een slechte gezondheid leidt tot een lagere participatie en minder kansen, waardoor het inkomen achterblijft, maar een laag inkomen of een laag niveau van participatie heeft ook invloed op de gezondheid.
    Ouderen kunnen bijvoorbeeld depressief worden van het gevoel niet mee te kunnen doen aan de samenleving (Bath & Deeg, 2005).

    Social engagement and health outcomes among older people - Introduction to special section – A review
    Peter A. Bath1 & Dorly Deeg2 – (1) Health Informatics Research Group, Department of Information Studies, University of Sheffield, 211 Portobello Street, Regent Court, Sheffield, S1 4DP, UK – (2) - Institute for Research in Extramural Medicine (EMGO Institute), VU University Medical Center (VUMC), Amsterdam, The Netherlands - Eur J Ageing, 9 March 2005; 2: 24-30
    Cfr. :
    http://www.springerlink.com/content/j7150v2j5q3h2147/


    Cfr. : http://www.rivm.nl/vtv/object_document/o5728n30606.html

     

    13-12-2008 om 23:46 geschreven door Jules

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    10-12-2008
    Klik hier om een link te hebben waarmee u dit artikel later terug kunt lezen.Moeder verdacht van moord op chronisch vermoeide dochter - Deel I
    Klik op de afbeelding om de link te volgen

















    Moeder verdacht van moord
    op chronisch vermoeide dochter

    The BCG injection at school...

    Deel I

    Miek - die de wanhoop van deze moeder zo herkent vanuit de periode dat haar dochter volledig verlamd als gevolg van de CGT-behandeling op bed lag en niemand hulp wilde bieden – schrijft :

    Wie is hier de schuldige ?!
    De moeder of de medische wereld die ME/CVS weigert te erkennen en als het even kan de oorzaak van de ziekte bij de patient of zijn directe omgeving zoekt ?
    Naast de wanhoop over je zieke kind, de wanhoop over het uitblijven van goede medische hulp en daarnaast nog het gevecht tegen artsen, instanties etc.... zo ongelooflijk herkenbaar !
    Ik hoop dat de familie van Lynn en - haar moeder in het bijzonder - de rust gegund wordt om hun verdriet om het leven en sterven van Lynn te verwerken.


    Moeder verdacht van moord op chronisch vermoeide dochter

    ME/CVS net - Bron : Het Nieuwsblad

    De politie van het Britse Stonegate verdenkt een moeder ervan haar 31-jarige dochter uit medelijden te hebben gedood.
    Lynn Gilderdale leed aan chronische vermoeidheid en lag al 16 jaar in bed.

    In haar kinderjaren was Lynn een gelukkig kind.
    Ze hield van zeilen, zwemmen, fietsen en muziek.
    Maar toen werd ze ziek.
    In 1992 stelden de dokters CVS - het Chronisch Vermoeidheidssyndroom - bij haar vast.
    In de mate van het mogelijke vocht Lynn tegen de vooroordelen van de ziekte.
    Haar moeder Kay werd haar voltijdse verpleegster.

    Lynn Gilderdale leed aan een erge vorm van CVS.
    In een vergevorderde fase van de ziekte kon ze enkel nog haar pink bewegen.
    Ze had ook alle moeite van de wereld om kennissen te herkennen.
    Licht verdroeg ze toen al lang niet meer.
    Haar huid was zo bleek dat ze op een doorschijnende pop leek.

    Twee jaar geleden sprak haar moeder Kay nog in een interview haar wanhoop uit :

    'Lynn ligt opgesloten in haar kamer.
    Ze is niet dood, maar ze leeft ook niet meer.
    Mijn moederhart bloedt als ik zie hoe mijn dochter aftakelt.
    Ik denk niet dat het goed voor haar is als ze nog zestig jaar op deze manier moet leven.
    '

    Donderdag vond de politie Lynn Gilderdale dood bij haar thuis.
    Haar moeder Kay werd gearresteerd op verdenking van moord.
    Ze werd op borg vrijgelaten.
    Verder onderzoek moet uitwijzen hoe Lynn Gilderdale precies stierf.
    Haar familie hield intussen een herdenkingsmis.

    'Lynn vocht lang en hard.
    Ze trotseerde 16 jaar lang haar ziekte en constante pijn
    .'

    Er is geen gekende kuur om CVS te genezen.

    Cfr. : http://www.mecvs.net/module-ME_CVS_docs-viewpub-tid-1-pid-384.html



    Arrest over ME campaigner's death

    BBC NEWS, 2008/12/08 - © BBC MMVIII

    The mother of a prominent ME sufferer and campaigner has been arrested on suspicion of murder following the death of her severely ill daughter.

    Kay Gilderdale, 54, was questioned and released on police bail after the death of Lynn Gilderdale, 31, on Thursday.

    Sussex Police were called to Ms Gilderdale's home in Stonegate, East Sussex, at about 0830 GMT.

    Ms Gilderdale had been campaigning for a better understanding of ME, which she contracted about 17 years ago.

    Her family, who issued a statement through Sussex Police, said : "Lynn was young, beautiful, loving and caring. At the age of 14 years she was struck down by ME - an illness greatly misunderstood - and, as a result, suffered the stigma attached to this dreadful illness. She fought long and hard for 17 years with immense bravery, enduring constant pain and sickness. Every system of her body was affected."

    Ms Gilderdale required 24-hour care, but still had time for others, her family said.

    "She was a much-loved daughter, sister and granddaughter who, despite her illness, always gave love and support to others," they continued : "In life Lynn strove to help the medical profession improve their insight into ME, which affects thousands of people in varying degrees of severity."

    TB vaccination

    Rother district commander Ch Insp Heather Keating said : "This is a very tragic incident, but we are not looking for anyone else in connection with it."

    Mrs Gilderdale has been bailed until 6 March, 2009.

    Her daughter fell ill after receiving a vaccination for TB when she was 14-years-old.
    She then went on to have bronchitis, tonsillitis and glandular fever, before being diagnosed with ME.
    The condition, which is also known as Chronic Fatigue Syndrome, often left her unable to get out of bed.
    The ME Association estimates that 250,000 people are affected by the condition in the UK.

    Cfr. : http://news.bbc.co.uk/go/pr/fr/-/1/hi/england/sussex/7771047.stm


    *

    The story of Lynn Gilderdale


    'ME has taken over my daughter's life'

    If I could bring people here each day and make them see what Lynn has put up with...
    It's taken over her whole life

    Kay Gilderdale - BBC News Online, 21-03-2001

    Kay Gilderdale, whose 23-year-old daughter Lynn is severely ill with ME tells BBC News Online how the illness has affected her family over the last nine years.

    Lynn Gilderdale, from Tunbridge Wells in Kent, was a happy 14-year-old when she fell ill.
    She had been an active teenager; sailing, dancing, playing the clarinet and piano and going out with her friends.
    After a BCG vaccination for TB, she felt unwell.
    She then went on to have bronchitis, tonsillitis and glandular fever in quick succession.

    Kay said : "Our GP told us she was developing a post-viral infection. But she began to get very ill and we knew that there was something very serious going on."

    She was diagnosed then as having ME.

    The family followed their GP's advice and encouraged Lynn to take as much exercise as possible.

    But that proved to be the worst course of action, says Kay : "We would walk her down the road and she would get back to the house and collapse. It got to the point where she was totally bed-ridden and she couldn't sit up without going unconscious. She couldn't swallow anything at all. She was in terrible pain, with muscle spasms and she had swollen glands and lymph nodes. We were very frightened by the whole thing and we went to the medical profession to try to get some help."

    But she says : "We came up against a brick wall because nobody seemed to realise ME could be that serious."

    'Lack of help'

    A short stay in a psychiatric ward, the only place available, proved to make Lynn's health worse.
    So for the last nine years, Kay has cared for her daughter at home, giving up work to do so.

    She says she gets extremely angry when people dismiss ME.

    "Lynn knew she was very ill. We knew she was very ill, but she had doctors and nurses telling her that she was pretending and that she could do more. We get very very mad if we see anyone who doesn't believe ME is an illness, and if people just think its a very minor illness. If I could bring people here each day and make them see what Lynn has put up with... It's taken over her whole life."

    When she came home, Lynn could do nothing for herself.
    She could not even speak.

    Over the last nine years, she has suffered a number of complaints.

    Last year she had a clot on her lung.
    And she has suffered from low cortisol levels, which could have led to her adrenal glands failing.

    In the course of treating that, doctors looked at the hypothalamus in the brain and found that was where the problem lay.
    She is now on steroids to correct the problem.
    Lynn also has osteoporosis because of low oestrogen levels.

    Her health has improved a lot over the last nine years.
    She still cannot speak, but can communicate through sign language and she is bed-ridden, but can mover her arms and the top half of her body.

    Her memory is still bad, and she has to be fed through tubes because she us unable to swallow.

    Kay says the family's life has changed dramatically since Lynn got ill, though the family have no way of knowing when she might get better.
    But she is determined to do so. Kay says : "Lynn always says to us that she hasn't given up so much not to get better."

    Over the years she has had to watch her friends and her older brother go through the normal stages of growing up and hearing their news makes her happy.

    Kay says : "But sometimes I read letters to her and there are tears in her eyes because she can't do any of that."

    Cfr. : http://news.bbc.co.uk/1/low/health/1234297.stm



    Adrenal Insufficiency & Hypothalamic Dysfunction in M.E.

    Kay Gilderdale

    Lynn has been severely affected by ME for 15 years.
    She is totally bedridden, paralyzed and tube-fed and has been unable to speak, read or write, since becoming ill in 1992 at the age of 14.
    Her long and short-term memory has been badly affected and she suffers many distressing symptoms on a daily basis.

    Nine years ago, Lynn was diagnosed with adrenal insufficiency, after private salivary tests revealed low levels of cortisol.
    Our GP followed-up these results with blood tests, which confirmed that Lynn was producing only tiny amounts of cortisol.
    Cortisol production is essential to allow the body to deal with stress of any kind, either physical (pain, infection, surgery etc.) or emotional (grief, upset, fright etc.), so she was started on small doses of Hydrocortisone.

    Over the years, Lynn has frequently been admitted to our local hospital for various emergencies and during one of these admissions, we asked if 24-hour cortisol tests could be done.
    The consultant was surprised by the results and arranged for a second lot of tests to be carried out.
    The result was the same, consistently low cortisol levels.
    The consultant was not receptive to ME literature we gave him, about studies that identified abnormally low levels of activity in the hypothalamic-pituitary-adrenal axis (HPA) [the mechanism by which the hypothalamus and pituitary glands in the brain, control the output of cortisol from the adrenal glands].
    He believed that Lynn had primary-adrenal-failure (that the adrenals stopped working first), as opposed to secondary-adrenal-failure because of hypothalamic dysfunction, as part of the underlying disease process of ME.

    Convinced that Lynn’s low cortisol production was due to hypothalamic dysfunction, we repeatedly asked if CRH or ACTH could be measured.
    The hypothalamus sends corticotrophin (CRH) to the pituitary gland allowing it to release adrenocorticotropic (ACTH) to the adrenals to stimulate the production of cortisol.
    If Lynn’s levels of CRH or ACTH were low, it would support our theory that she had secondary-adrenal-insufficiency and that there was interruption to the HPA pathway.

    Finally, at the end of last year, when Lynn was in hospital for something else, the consultant agreed to a blood test to establish how much ACTH Lynn’s pituitary was producing.
    He expected the result to be high, which would support his belief that Lynn had primary-adrenal-failure.
    He was wrong, the result came back <10, undetectable; her pituitary gland was not making ACTH.
    This confirmed that the problem was not the target organ (the adrenals), but - at a much higher level –the brain.
    A pituitary mass lesion could also cause impairment of production of stimulating hormones, but Lynn had had an MRI brain scan the previous year, which would have shown anything large enough to interfere with pituitary function in such a big way.
    A second test was carried out with the same result of <10 ACTH.
    The consultant had to agree, that Lynn had secondary adrenocortical insufficiency and impairment of ACTH secretion.
    We would like the matter clarified further, but have been told that the tests required are potentially dangerous for someone in Lynn’s condition.

    Not everyone with ME will have low cortisol levels.
    It is by no means a diagnostic test.
    It’s just another aspect of the havoc this illness causes within the body.
    Neither is supplementation with Hydrocortisone a cure, it is purely a treatment of a symptom of the primary disease.
    In fact it causes more problems, such as adrenal atrophy, immune suppression and brittle bones.
    What it is though, is another piece of proof that this illness is all in the brain and not all in the mind.
    We now have so many pieces of this huge jigsaw puzzle, that it amazes me that scientists can’t look at it and put it all together and get the whole picture, even if there are a few bits missing.
    They will, a little late for some, but they will.

    Cfr. : http://www.25megroup.org/Newsletter/Issue%2023/Adrenal%20Insufficiency.doc.



    Trapped in bed for 14 years with chronic fatigue

    Gill Swain - Daily Mail, 05-07-2006

    She can't swallow.
    She can't speak.
    She's in constant pain.
    Yet some doctors say Lynn's illness is all in the mind.
    Read her story and you'll never be flippant about 'yuppie flu' again...

    For years many doctors dismissed ME, also known as Chronic Fatigue Syndrome, as 'yuppie flu'.
    But last month a coroner gave ME as the official cause of death for the first time in the UK - raising hope among campaigners that the condition is about to be taken seriously at last.

    Here, Kay Gilderdale tells Gill Swain the heartrending story of her daughter, Lynn, 28, who was struck down by the illness 14 years ago...

    The soft cotton curtains are permanently drawn to cut out the summer glare.
    On the bed in the gloom lies a beautiful young woman with skin so pale it is almost translucent.
    She is stretched out flat on a sheepskin to prevent bedsores, her head resting on a towel.
    There is a tube down her nose delivering liquid food and an intravenous line pumping drugs straight into her chest.

    Her name is Lynn Gilderdale, she is 28 years old and this has been her life for 14 years.
    Apart from stays in hospital when she develops an infection, Lynn never leaves her bed in the small bedroom at the back of her mother's bungalow in the village of Stonegate, East Sussex.

    Her legs are paralysed and without feeling, she cannot sit up without passing out and her neck is too weak to support her head.
    She has lost more than half the bone density in her spine and went through the menopause at the age of 20.
    She is in constant pain.
    She cannot swallow.
    She cannot speak.
    Her mother Kay, who cares for her, has not heard her daughter's voice since she fell silent in August 1992.

    Lynn is suffering from ME...
    Myalgic Encephalomyelitis once sneeringly dubbed 'yuppie flu' and suspected of being a psychological affliction that struck mostly people who couldn't cope with the stresses of modern life.
    Anyone who ever thought that way would find a visit to Lynn a deeply shocking and humbling experience.
    'It's like she's in limbo,' says Kay, 52 : 'If someone dies, you mourn them, then you get to a stage where you know that person is gone and you move on. But Lynn is neither one nor the other. She is stuck in that room, not dead, but not alive properly. If I didn't believe and she didn't believe, that one day she would get better then I don't think it would be right for her to go on suffering like this for a whole lifespan of 70 or 80 years.'

    It is estimated that a quarter of the 240,000 ME victims in the UK suffer severe symptoms such as paralysis and the inability to speak or swallow for months or years and there are probably several hundred as terribly ill as Lynn.
    Dr Anne MacIntyre, who wrote one of the first self-help books for ME sufferers and has known Lynn since 1993, says : '
    At one time Lynn was so sick she recognised nobody, not even her parents. It is absolutely dreadful. These cases are mostly of people who fell ill in their teens, but they are hidden because no one ever sees them. They are too ill to get to a clinic and they are cared for at home by parents or other family. Their GPs have mostly given up on them because no one really knows what is going on with this illness.'
    Though only able to turn her head weakly from side to side and move her arms.

    Lynn's strength of character is unmistakeable.
    She expresses herself through a sign language that she has developed with Kay and smiles and makes jokes whenever she can.
    Kay invites people into her daughter's small room, which is cluttered with soft toys, to meet her and take photographs to convince the world this is a real illness and to encourage more research to find a cure.

    To describe the pain she is in, Lynn makes stabbing gestures and points to the left side of her chest, sweeps her hand across her forehead to indicate her persistent headache and twists her hands around each other to represent the churning agony in her stomach.

    Asked if she is fed up with being like this, she looks both angry and exasperated and holds her thumb and forefinger emphatically an inch apart, meaning : 'Just a bit !' She is very sad, she indicates, but never depressed. I am not brave, I have no choice but to be hopeful, otherwise I would just give up,' her mother translates.

    The family's ordeal has been made worse by the fact that, because there is no diagnostic test which can detect the cause of ME's symptoms, many people - including doctors and nurses - persist in believing it is self-induced.
    But Lynn was a lively, intelligent, popular teenager who enjoyed a happy life with her family.
    'We didn't realise how happy until we lost it,' says Kay.

    With her mother, older brother Steve and father Richard, a former police inspector who now works for the force as a civilian, Lynn would go sailing and on family cycle rides.

    She played the piano and clarinet, won prizes for ballet and loved swimming and going to the youth club with her friends.
    Then in November 1991, when she was 14, she had a TB vaccination and immediately felt unwell.
    Lynn struggled in to school the next day but was sent home and never returned.

    Lynn developed flu, bronchitis, tonsillitis and glandular fever, one after the other.
    '
    By February she was really very ill and we were beginning to realise it wasn't just normal bugs,' says Kay.

    'Her legs would give way, her memory was getting very poor, she was having awful pains all over her body and a constant, dreadful sore throat and she would often faint.'

    Because of her weak legs, she had to start using a wheelchair, then the top half of her body became floppy.
    By May 1992, ME had been diagnosed and Lynn was bedridden, had difficulty swallowing, couldn't recognise people and her voice had reduced to a whisper.

    Frequently, she would fall unconscious while every muscle twisted in violent spasms.
    'That first year was so terrible, when we knew she was extremely ill but the tests didn't show anything,' says Kay : 'The first paediatrician we saw said : "It's OK, you've got a fashionable illness. It will go away in time."

    'With every other disease you get kindness and sympathy, but though Lynn was very frightened and we were desperate for help, all we got was accusations that she was pretending. It was hugely upsetting.'

    Cruel, if well-meaning, experiments were conducted on her in hospital to 'force' her to admit she was making it up.
    Nurses left her unattended for hours in the theory that she would get up to use the bathroom.
    This had humiliating results.

    'Making it up'

    Doctors once administered a 'truth drug' and questioned her over whether she was being abused at home.
    There was a suggestion Lynn had school phobia and Kay once overheard a nurse speculating that it was Munchausen's Syndrome by Proxy - when a mother induces symptoms in a child to draw attention to herself.

    'One consultant was convinced Lynn was orchestrating her spasms at certain times of day so they took away her clock, the radio and TV and the nurses lied to her about the time. She still had the attacks at the same times. They abused her verbally, calling her a "silly little girl", saying "Of course you can do it" and telling her to fetch things herself. Sometimes she was in such pain and felt so terribly ill she would ask us : "What is going to happen to me ?" But we had no answers for her and neither did the doctors.'

    Medical opinion now mostly concurs that ME is caused by a virus, but there is still no treatment for it besides controlling the symptoms.

    At first, however, Kay was advised to make Lynn stick to a timetable of study, rest, socialising and exercise.
    So she would make Lynn walk down the road even when she felt weak - then had to half-carry her back when her legs gave way.

    Kay had trained as an auxiliary nurse and it made sense to her at the time to keep Lynn moving.
    Now she bitterly regrets it, as she is convinced it caused Lynn more harm.

    Softly-spoken and mild-mannered, Irish-born Kay is determined to stay positive, but she had to struggle to come to terms what she saw as her own role in Lynn's suffering.
    'I don't beat myself up about it any more because that would be a waste of energy and I need every atom to cope,' she says.

    Nine months after she fell ill, Lynn could move no part of her body except her little finger, could not speak and had to be fed through a tube.
    But Kay and Richard made the courageous decision to take her home.

    'They said if we did, there was a risk she would die, but we felt there was a greater risk if she stayed in hospital and didn't get the peace and care she needed. For two or three years afterwards she would wake up screaming from nightmares of things that happened to her in hospital. She is still scared of doctors and nurses and I won't have anything to do with anyone who doesn't believe in ME.'

    Kay left her job in accounting to look after Lynn and has never left her side for more than two days.
    Her marriage broke up - she says not because of Lynn's illness but unrelated problems.
    However, Richard still helps care for his daughter.

    Lynn's brother Steve did well at school despite his family life disintegrating and now works in IT and is due to become a father in August.

    Kay was only 37 when Lynn fell ill.
    But for her, too, normal life came to an end then.
    She has a carer in twice a week so she can go shopping and see people.

    'I don't resent what it has done to my life but I do resent whatever has made her so ill. It's been heartbreaking to watch my child lose her faculties one by one. 'It is still very hard for me to see mothers and daughters together or groups of teenagers dressed up and laughing or to hear a family in the garden having a barbecue with children running around. If I lived somewhere like a high-rise flat, I don't think I could have coped. And at least I can walk in my garden.'

    Every birthday and Christmas has been sad as the years have passed with no improvement, though Kay tries to make them special.
    'For her 18th, I wrapped 18 little presents and put them in a biscuit tin which I iced and put candles on. Lynn said it was a lovely cake but she couldn't eat it, then I showed her what it really was.'

    In her late teens, Lynn's body stopped producing oestrogen and she was diagnosed with premature ovarian failure.
    She has been on HRT ever since, but the lack of hormones contributed to her severe osteoporosis.
    She is on 24-hour pain control, plus drugs to prevent sickness and spasms.

    Light and noise

    Lynn is hyper-sensitive to light and noise and for years could not bear to watch television or listen to music.
    Now she has forgotten how to read.
    She has a hamster with which she plays in the afternoons and she watches the darting movements of the tropical fish in a large tank beside her bed.

    She loves make-up and jewellery and choosing presents from mail-order catalogues.
    At her strongest she can make cards for friends.
    But she suffered a knock back in October.
    Her lung was punctured while she was having her Hickman line - a semi-permanent catheter through which she receives medication - replaced and she is now sleeping nearly 15 hours a day.

    Asked what she would like to do if she recovered, Lynn signals that she just wants to do normal things.
    And she folds her arms together in a rocking motion to indicate her yearning for a baby.

    'She has always loved children and I've told her there are many ways to have a baby even if you can't give birth yourself,' says Kay : 'But I am really hoping that once the virus which caused her ME has finally burned itself out, everything else will start working again. People do get better, even those as ill as Lynn. Every time I read of such a case I am pleased for them, but I can't help wondering when it will be her turn. If she could come out of that room, it wouldn't matter where we went. It would be enough just to feel the air on our faces, see the sky, be part of the world. Lynn tells me she feels it is all out there, waiting for her to step back into. It is not that she doesn't want to. She wants to so much. Who would choose to lie in bed and be injected with drugs so many times your veins collapse over the life she had as an active teenager ?'

    'We need to find the cause'

    'Yet the Government is putting money into treatments such as graded exercise and cognitive behaviour therapy - which don't help those most severely affected by ME - rather than into research to find the cause. Until a cure is found, the thing which would make the biggest difference to our lives would be for everyone to realise it is a real and terrible illness. But a lot of people still say to me they thought ME was "just tiredness". And people like Lynn are still being told: "Pull yourself together." '

    For information and advice for anyone severely affected by ME contact 'The 25 Per Cent Group' on 01292 318611 (- www.25megroup.org -) or Action for ME on 0845 123 2314 (- www.afme.org.uk -.

    Cfr. : http://www.dailymail.co.uk/health/article-393915/Trapped-bed-14-years-chronic-fatigue.html



    Mother’s endless love for daughter, who has lain ill for 14 years

    The Argus, 5th July 2006

    Sufferers of ME, known as Chronic Fatigue Syndrome, are used to the views of sceptics who believe the problem is all in the victim's head and those who think it is just about feeling tired.
    Try telling Lynn Gilderdale that.

    The 28-year-old has not been able to leave her bed for 14 years and communicates with her family through sign language.

    As a talented teenager, Lynn Gilderdale never sought attention.
    Living in the small village of Stonegate, near Heathfield, she kept busy with her hobbies and had three best friends with whom she was very close.
    She played the clarinet and piano, swam, won prizes for ballet, became school netball captain and regularly visited Stonegate youth club and the Swimming and Sailing Club in Eastbourne.

    In November 1991, aged 14, she faced the day many teenagers dread, the BCG injection at school.

    Lynn queued up, got her jab and went home but quickly began to feel ill.
    The following day was to be her last at school.

    Her immune system was unable to cope with the live virus in the injection, she did not produce the necessary antibodies and she began to develop illness after illness flu, bronchitis, tonsillitis and glandular fever.
    The illnesses left their physical toll.
    Her legs would sometimes give way, she was in pain, sometimes fainted and her memory was suffering.

    By May 1992, six months after the injection, Lynn was diagnosed with ME (myalgic encephalomyelitis) disparagingly termed "yuppie flu" by those who did not know any better.

    Doctors at a clinic in London were specialists in the syndrome but Lynn felt she was treated as an attention seeker with a made-up illness.

    Her mother, Kay, 52, said : "We were accused of all kinds of things because of the disbelief. The doctors started saying 'stop pretending, you can do this, you can do that', trying to make her do what she couldn't do."

    Although she could not swallow and spoke only in a whisper and failed to recognise people, she continued to undergo punishing experiments.

    She was given a truth drug, asked if she was abused at home and left alone to see if she would get up for the toilet, in a series of cruel but perhaps well-meaning experiments to try to snap her out of her condition.

    Her GP, though supportive, was not equipped to help and her parents decided in August that year to take her home.

    Doctors told them Lynn could die if they removed her but after watching her deteriorate in their care, Kay and Richard Gilderdale felt she would be safer, healthier and happier at home.

    Fortunately, they were right and Lynn is relatively much better than she was.

    At her worst, she could only move her little finger, could not recognise anybody, remember anything, remained in terrible pain with muscular spasms and shook all over.
    She could not bear any light, touch or noise.
    She could hear only one whispered voice at a time.

    Now home care and a lot of drugs quell the symptoms of her ME and she has adapted in clever ways.

    Her brother, Steve, who lives in Belgium as an IT manager, visits about once a month with various technologies which aid Lynn's quality of life, allowing her to listen to Robbie Williams or stories on her iPod and take photos or email from her bed.

    Her best friends, a doctor in New Zealand, a solicitor and an IT manager, all keep in touch with their old schoolmate.

    Most of the time she keeps company with her parents and Ollie, her persian cat, who guards her bed.
    Kay, who was an auxiliary nurse for 11 years, is her full-time carer, visited at least daily by ex-husband Richard, a former Sussex Police inspector now working for the force as a civilian.
    They broke up, says Kay, because of unrelated problems but have found a way to become friends again by spending time looking after Lynn.

    Lynn is able to communicate her feelings through a system of sign language she has developed herself.

    It is a natural and unlearned method, as she cannot remember anything for more than a few hours, but she has taught her family and carer what she wants.

    Kay said : "She's very intelligent and that's there still, even though she can't read or write. It doesn't make her depressed in the true meaning of the word, though she's sometimes sad and gets low when she's been in hospital for a month-long spell without any food, just on a drip. But she's never depressed, we have even discussed it and if she ever was we would look at treating that."

    But Lynn still sleeps 16 hours a day and never goes outside except on the way to hospital twice a year.
    Being bed ridden brings its own medical problems.

    She often has blood clots and severe osteoporosis, irritable bowel syndrome and asthma and is always fed through a tube.
    Recently she was taken to the Conquest hospital in Hastings to have her Hickman line replaced.

    She receives medication through the line but suffered complications, a punctured lung.

    After suffering breathing problems for two weeks and being put on oxygen, doctors discovered her lung had collapsed and the other lung was almost flat.

    She had two litres of blood pumped from her lung, was taken to Kings Hospital in London and put on a life-support machine for two weeks.

    Lynn is among the 25 per cent of ME sufferers who have such severe symptoms and there are no known cures.

    The family take heart from stories of those who have suddenly recovered from the virus and Kay is online every day keeping up to date with research into the syndrome.

    There are trials due to take place by the end of the year based on gene expression research, which would mean Lynn taking Beta Interferon, a drug usually prescribed for MS sufferers.

    But being unable to make it up to London for tests may rule her out of the trial.

    Stem cell research is another possibility and a network of families of ME patients are in regular contact to share their news.
    The Gilderdales are not religious.

    Kay says she cannot understand how there could be a God who could allow this sort of suffering but she is grateful for their religious neighbours who pray for Lynn.

    The small village of Stonegate has been very supportive of the family.
    Villagers help out if the family need anything but for the most part Kay is there full-time, with a carer who visits two mornings a week while Kay does a little shopping or runs her errands.
    She keeps her humour because she has hope and because Lynn cheers up everyone around her.

    When asked if she was fed up with her illness, Lynn signed : "Just a bit" and when her mother is tending to her when she is vomiting, she will lighten the mood by signing : "Nearly got you that time !"

    Kay was only 37 when Lynn fell ill and has little social life of her own but she gets on with looking after her daughter with a patient smile and says it has taught her an important lesson about dealing with doctors.

    She said : "In the beginning we relied on doctors having all the answers for us and put total trust in them but once we got to the point where they said if you take her home she could die, we realised you have to rely on yourself. If I went to the doctors for depression they wouldn't be able to cure it. They haven't got all the answers, you have to make your own life easier."

    Cfr. : http://www.theargus.co.uk/news/819443.mothers_endless_love_for_daughter_who_has_lain_ill_
    for_14_years/


    Mother arrested over ME 'mercy killing'

    Metro.co.uk, December 8, 2008

    The mother of an ME sufferer who nursed her daughter for 17 years has been arrested by police on suspicion of murder following what is believed to be a 'mercy killing'.

    Kay Gilderdale was released on bail pending further inquiries following the death of her daughter Lynn, 31, who was a prominent figure in campaigning for better understanding of the illness.

    Police were called to her home in Stonegate, near Heathfield, East Sussex, at 8.30am on Thursday.
    A spokeswoman for Sussex Police said : "A 54-year-old woman from Stonegate, arrested on suspicion of murder, has been interviewed and bailed to return on March 6."

    Kay Gilderdale provided round-the-clock care for her frail daughter alongside Lynn's father Richard.

    The investigation is being led by Detective Chief Inspector Andy Griffiths, from Sussex Police's Major Crime Branch.
    Rother district police commander Chief Inspector Heather Keating said : "This is a very tragic incident, but we are not looking for anyone else in connection with it."

    Relatives of Ms Gilderdale today praised her "courage, which she showed to the end" in coping with her "life-destroying" illness.
    They said her death would "leave a massive void in their lives" and added "the love she gave so unreservedly will be missed every minute of the day".

    In a written tribute released through Sussex Police today, her family said : "Lynn was young, beautiful, loving and caring. At the age of 14 years she was struck down by ME - an illness greatly misunderstood - and, as a result, suffered the stigma attached to this dreadful illness. She fought long and hard for 17 years with immense bravery, enduring constant pain and sickness. Every system of her body was affected. She required 24-hour care that was provided by her totally dedicated mother, with continuous support from Lynn's father."

    Describing the debilitating effects the illness had on her body, the statement went on : "Lynn suffered many hospital admissions, sometimes lasting several months, for life-threatening conditions. Prior to her illness, which left her paralysed, unable to speak, eat or drink and, until recently, no memory, she was an active healthy teenager full of life's dreams. She enjoyed sailing, swimming, cycling and was an accomplished musician."

    Her family vowed today to continue to campaign for a "better understanding" of ME : "She was a much-loved daughter, sister and granddaughter who, despite her illness, always gave love and support to others. In life Lynn strove to help the medical profession improve their insight into ME, which affects thousands of people in varying degrees of severity. Her dedicated mother, supported by Lynn's family, has pledged to achieve her ultimate goal - for better understanding and recognition of this life- destroying illness."

    Some 250,000 people are estimated to be affected by ME (Myalgic Encephalopathy) in Britain, according to The ME Association's website.
    Common symptoms include severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances and poor memory and concentration.

    Cfr. : http://www.metro.co.uk/news/article.html?Mother_arrested_over_ME_mercy_killing&in_article_id=436165&in_page_id=34



    Police investigate ME campaigner '
    murder'

    In The News, 08 Dec 2008

    Police are investigating the circumstances of the death of a prominent ME campaigner found dead at her house last week.

    The body of Lynn Gilderdale, 31, was found at an address in Stonegate, East Sussex, on Thursday December 4th at 08:30 GMT.

    A 54-year-old woman has been arrested on suspicion of murder over Ms Gilderdale's arrest and has been bailed until March 6th.

    Rother district commander Chief Inspector Heather Keating said : "This is a very tragic incident, but we are not looking for anyone else in connection with it."

    Ms Gilderdale was a well-known figure in campaigns to further the understanding, causes and treatment of ME, which she had suffered from since her teenage years.

    Cfr. : http://www.inthenews.co.uk/news/india/health/police-investigate-me-campaigner-murder--$1253359.htm



    Mum Held Over ME Daughter's Death
    A mother has been arrested on suspicion of murdering her acutely ill daughter, who suffered from ME

    Sky News, December 09, 2008

    Kay Gilderdale, 54, is now on bail pending further inquiries following the death of her daughter Lynn, 31, a prominent figure in campaigning for better understanding of the illness.

    Mrs Gilderdale provided round-the-clock care for her frail daughter alongside Lynn's father Richard.

    Police were called to her home in Stonegate, near Heathfield, East Sussex, last Thursday morning.
    The investigation is being carried out by Sussex Police's Major Crime Branch.
    Rother district police commander Chief Inspector Heather Keating said : "This is a very tragic incident, but we are not looking for anyone else in connection with it."

    Sky News understands Ms Gilderdale died from an overdose of painkillers.

    Some 250,000 people are estimated to be affected by ME (Myalgic Encephalopathy) in Britain, according to The ME Association's website.
    Common symptoms include severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances and poor memory and concentration.

    Relatives of Ms Gilderdale praised her "courage, which she showed to the end" in coping with her "life-destroying" illness.
    They said her death would "leave a massive void in their lives" and added "the love she gave so unreservedly will be missed every minute of the day".

    In a written tribute released through Sussex Police, her family said : "Lynn was young, beautiful, loving and caring. "At the age of 14 years she was struck down by ME - an illness greatly misunderstood - and, as a result, suffered the stigma attached to this dreadful illness. She fought long and hard for 17 years with immense bravery, enduring constant pain and sickness. Every system of her body was affected. She required 24-hour care that was provided by her totally dedicated mother, with continuous support from Lynn's father."

    Describing the debilitating effects the illness had on her body, the statement went on : "Lynn suffered many hospital admissions, sometimes lasting several months, for life-threatening conditions. Prior to her illness, which left her paralysed, unable to speak, eat or drink and, until recently, no memory, she was an active healthy teenager full of life's dreams. She enjoyed sailing, swimming, cycling and was an accomplished musician."

    Her family has vowed to continue to campaign for a "better understanding" of ME.

    Cfr. : http://news.sky.com/skynews/Home/UK-News/Mother-Arrested-After-Death-Of-ME-Sufferer-Daughter-Lynn-Gilderdale-In-East-Sussex/Article/200812215174913?lpos=UK_News_News_Your_Way_Region_1&lid=NewsYourWay_ARTICLE_15174913_
    Mother_Arrested_After_Death_Of_ME_Sufferer_Daughter_Lynn_Gilderdale_In_East_Sussex



    Mum is held for daughter murder

    Virginia Wheeler - The Sun, 09 Dec 2008

    A devoted mum has been arrested over the suspected mercy-killing of her daughter — bedridden nearly 17 years with “yuppie flu”.

    Policeman’s wife Kay Gilderdale, 54, was quizzed on suspicion of murder and bailed by cops just hours after the death of 31-year-old Lynn.

    It was reported that police believe she died from a massive overdose of morphine after trying to kill herself at least twice with the same drug.
    Kay was arrested over suspicions she helped administer the drug after watching her daughter’s suffering.
    Chief Inspector Heather Keating, of Sussex Police, said yesterday : “We are not looking for anyone else.

    Neighbour Catherine Klek, 58, described Kay as “an absolute saint”.
    She added : “It must have been a terrible burden.
    Lynn contracted ME — myalgic encephalomyelitis — at the age of 14, after suffering a reaction to a TB vaccination in 1991.
    She had to be fed through a tube and couldn’t swallow or speak.

    At times she could only move her little finger, couldn’t recognise anyone and shook all over.

    But not all medics regard ME as a genuine illness.
    It was not recorded as a cause of death in the UK until 2006 — and there is no known cure.
    Kay, of Stonegate, East Sussex, had spoken publicly of her struggle to care for Lynn and her fight to get medics to take ME seriously.
    It affects an estimated 240,000 Britons.

    The mum told how doctors branded Lynn an attention-seeker, suggested she had a school phobia and even gave her a truth drug to see if she had made up symptoms.

    Kay said : “With every other disease you get kindness and sympathy. But though Lynn was very frightened — and we were desperate for help — all we got were accusations that she was pretending.

    Yesterday, Lynn’s dad Richard, 56 — who is separated from Kay but visited often — said the pair and elder son Steve were “devastated”.
    Police released a statement from them, which said : “Lynn was young, beautiful, loving and caring. Prior to her illness, she was an active, healthy teenager full of life’s dreams. She fought for 17 years with immense bravery, enduring constant pain and sickness.

    Limbo

    Lynn suffered muscle spasms, blood clots, severe osteoporosis, irritable bowel syndrome and asthma.
    She could not bear any light — even TV — touch or noise and could hear only one whispered voice at a time.

    Before Lynn’s death on Thursday, Kay had said : “It’s like she’s in limbo. If someone dies, you mourn. You get to a stage where you know that person’s gone and move on. But Lynn is neither one nor the other. She is stuck in that room, not dead, but not alive properly. If I didn’t believe — and she didn’t believe — that one day she’d get better then I don’t think it would be right for her to go on suffering like this for a whole lifespan of 70 or 80 years.

    Last night, police called Lynn’s death “a very tragic incident”.

    The cause of death is not yet known.

    Cfr. : http://www.thesun.co.uk/sol/homepage/news/article2018488.ece



    Mother Assists Daughter In Suicide
    Kay Gilderdale is charged with helping her daughter inject a lethal dosage of medicine to end her suffering

    Javno.com, December 09, 2008

    Kay Gilderdale was arrested over suspicions of killing her 31-year-old daughter who had spent more than half of her life suffering a terrible disease, Times writes.

    Kay is suspected of helping her daughter inject a lethal dosage of medicine, after watching her daughter fight the syndrome of chronic fatigue for 16 years.

    An investigation has so far revealed that Lynn died of a morphine overdose and she previously tried to kill herself twice.

    Kay said that he felt as if her daughter was living in limbo and that she thought whether it was righteous for her child to be living with horrible pain all her life.

    Lynn showed first symptoms of chronic fatigue in 1992 when she fell on her bed and remained lying there.
    With time, she lost the ability to speak.

    The Gilderdales live in Stonegate, near Hearhfield, where Kay was arrested over suspicions of killing her daughter.
    The entire family came out in public with an announcement, saying Kay was a woman who had subjected her entire life to taking care of her daughter.

    Lynn was a healthy teenager full of life before the illness which left her paralysed and without the ability to speak, normally consume food and drinks, lately without her memory.

    Cfr. : http://www.javno.com/en/lifestyle/clanak.php?id=212810



    Lees verder - Deel II



    10-12-2008 om 23:15 geschreven door Jules

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    Moeder verdacht van moord
    op chronisch vermoeide dochter

    The BCG injection at school...

    Deel II



    Mother arrested as '
    yuppie-flu' daughter is found dead after 16 years in bed

    Vanessa Allen, Colin Fernandez and Tamara Cohen – The Daily Mail, 09th December 2008


    A mother who nursed her daughter for 17 years with the disease ME has been arrested on suspicion of her murder following what is believed to have been a 'mercy killing'.

    Police sources revealed that Lynn Gilderdale, 31, died from a massive overdose of morphine after attempting suicide with the same drug at least twice during her battle with the debilitating condition.

    Detectives arrested her mother Kay, 54, over suspicions that she helped administer the fatal dose after watching her daughter suffer since she was 14.

    Mrs Gilderdale, a trained nurse, was the full-time carer for her frail daughter, who had been bedridden for more than 16 years and was taking a cocktail of drugs for her condition.

    Police were called to their bungalow in Stonegate, near Heathfield, East Sussex, on Thursday after the alarm was raised by Lynn's father, Mrs Gilderdale's ex-husband Richard, a former police sergeant.

    Mrs Gilderdale was arrested on suspicion of murder, interviewed and released on police bail on Friday.
    The suspected 'mercy killing' will reignite the right-to-die debate over assisted suicide.

    Yesterday she and her ex-husband released a statement on behalf of their family.

    Pointedly referring to Mrs Gilderdale's 'total dedication' to her daughter, they said : 'Lynn was young, beautiful, loving and caring. At the age of 14 years she was struck down by ME - an illness greatly misunderstood - and as a result, suffered the stigma attached to this dreadful illness. She fought long and hard for 17 years with immense bravery, enduring constant pain and sickness. Every system of her body was affected. She required 24-hour care that was provided by her totally- dedicated mother, with continuous support from Lynn's father.'

    They said Lynn had been active and healthy until she was 14.
    She had a tuberculosis immunisation in November 1991 and immediately felt unwell.

    She was diagnosed with ME in May 1992 and was left bedridden by her severe condition.
    She had been unable to speak since August that year.

    Her family said : 'Prior to her illness, which left her paralysed, unable to speak, eat or drink and until recently, no memory, she was an active healthy teenager full of life's dreams. She enjoyed sailing, swimming, cycling and was an accomplished musician. Her family praise and admire Lynn for her courage, which she showed to the end. She was a much-loved daughter, sister and granddaughter who despite her illness always gave love and support to others. Lynn's family say her death will leave a massive void in their lives - and the love she gave so unreservedly, will be missed every minute of the day.'
    Police were called to the £400,000 bungalow at 8.30am on Thursday. Mrs Gilderdale was arrested just after 10am.

    A post-mortem examination has been carried out but police refused to reveal the cause of death pending further toxicology tests.

    Chief Inspector Heather Keating said: 'This is a very tragic incident. We are not looking for anyone else in connection with it.'

    A Sussex police spokesman said Mr Gilderdale, who still works for the force in a civilian role, was not suspected of any involvement in his daughter's death.

    He split from his wife in 2002.
    The couple, who also have a son, Steven, said their divorce had not been caused by their daughter's illness.

    Mr Gilderdale still lives nearby and is said to have visited his daughter daily and to have helped with her day-to-day care.

    He was with his Irish-born ex-wife at the family home yesterday, where she was being comforted by her sister.

    Mrs Gilderdale has been a prominent campaigner over the illness which struck down her daughter.

    The family statement added : 'In life, Lynn strove to help the medical profession improve their insight into ME which affects thousands of people, in varying degrees of severity. Her dedicated mother, supported by Lynn's family, has pledged to achieve her ultimate goal - for better understanding and recognition of this life-destroying illness.'


    The agonising truth about 'yuppie flu'

    ME affects up to 250,000 sufferers in Britain. Although it was first documented in the 1930s, it was not officially recognised by the Government's medical advisers until 2002.

    Until then victims of myalgic encephalomyelitis were often dismissed as having 'yuppie flu', as its symptoms were considered particularly common among overworked middle-class professionals.

    Common symptoms include severe fatigue, painful muscles and joints, insomnia, gastric disorders and poor memory and concentration.
    There is currently no test or cure and doctors are able to diagnose it only after ruling out other possible causes, including flu, diabetes and depression.

    The condition usually develops during the early twenties to mid-forties although children can also be affected, most probably between the ages of 13 and 15.
    Women account for up to three-quarters of all cases.

    Sufferers include the athlete Dame Kelly Holmes, who was struck down in 2001 but recovered and went on to win double gold at the 2004 Olympics in Athens.

    Scientists believe it could be carried in the genes, or be set off by a 'trigger' including bacterial illness, a viral infection such as glandular fever, stress, depression or a reaction to a traumatic event, such as bereavement or redundancy.

    Some sufferers recover fully within two years and the majority learn to manage their condition with anti-depressants and painkillers and through avoiding stress, monitoring their energy levels and taking gentle exercise.

    But around a quarter go on to develop severe ME lasting for years or even decades, often leaving them completely housebound and totally reliant on carers.

    In his 2002 report the Chief Medical Officer, Liam Donaldson, said ME 'should be classified as a chronic condition with long-term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease.'


    Cfr. : www.dailymail.co.uk/news/article-1092865/Devoted-mother-arrested-mercy-killing-yuppie-flu-daughter-died-massive-morphine-overdose.html




    I've seen patients paralysed, dying Aids victims, starving children... but I've never seen anyone as ill as Lynn

    Gill Swain - The Daily Mail, 09th December 2008


    On a glorious day two years ago last summer, I turned into a cul de sac on the edge of an East Sussex village.
    I had arranged to interview Kay Gilderdale about her daughter Lynn's struggle with ME, the so-called 'yuppie flu'.

    It was hard to imagine anything could be terribly wrong inside such an immaculately ordered home.


    Kay greeted me with a smile.
    I remember a quiet, neat woman with a low voice and a gentle manner.
    She was a little other-worldly, cut off as she was from normal life and I had the impression of someone worn almost threadbare by years of suffering.
    But she had a core of inner strength, was in no way self-pitying and was clearly utterly devoted to her daughter.

    She led me through the sitting room which I remember felt like a dead zone, completely unused, to the room at the back where Lynn had been lying in her bed for 14 years.

    This was where the life of the house took place, such as it was and an attempt had been made to give it cheer with pretty furnishings and ranks of soft toys on the shelves.

    But the curtains were drawn, shutting out that lovely day and every other day.
    In the gloom I made out a small, ethereal figure lying completely flat and motionless, her skin so pale it was almost translucent, the only sign of life her large, beautiful brown eyes.

    Yesterday, I heard that Lynn had died last Thursday and that police had arrested Kay on suspicion of murder.
    I felt infinitely and bitterly sad, not so much that Lynn had died because I felt that at last she was released from what was a terrible living death, but because fate had inflicted such cruelty during her life.

    My first reaction to the news about Kay was disbelief.
    She took such pains with Lynn, slept with an intercom, reacted to every whimper, saved her fragile life on so many occasions.
    I could not imagine her harming her.

    I thought of what life must have been like in the two years since I met them, what pain and despair the two of them must have endured as Lynn perhaps deteriorated further and no hope of a cure appeared on the horizon.

    Before meeting this remarkable mother and daughter I had seen African children suffering from starvation, met people dying of Aids, patients paralysed from the neck down, others in the last stages of terminal cancer.
    But I had never seen a living person as desperately ill as Lynn Gilderdale.

    Hypersensitive to light and noise, she lay on a sheepskin to prevent bedsores, with her head resting on a towel.
    There was a tube down her nose delivering liquid food and a Hickman line pumping drugs straight into her chest.
    Her legs were paralysed and without feeling, she was unable to sit up without passing out and her neck was too weak to support her head.

    She had lost more than half the bone density in her spine and had gone through the menopause at the age of 20.
    She was in constant pain.
    She was on drugs to prevent sickness and spasms, was unable to swallow and had not spoken since August 1992, three months after she had been diagnosed with ME at the age of 14.

    In my 35 years as a journalist, the story of Lynn and Kay Gilderdale was one of the most affecting cases I had come across.
    I felt shocked, chastened and humbled as I talked to them and the memory of Lynn's haunting brown eyes, set in an exquisitely beautiful face, has stayed with me ever since.

    At the time I didn't know how she could sustain life in such a state but the answer, of course, was Kay.
    Aged 37 when Lynn fell ill, Kay gave up her accounting job and any semblance of a life of her own to care for her daughter.

    Kay was almost as trapped in that shrouded room as Lynn was.
    She had a carer in twice a week so she could go shopping and her former husband, Richard and son, Steven, were involved in caring for Lynn too which meant she could get away for occasional weekends to her native Ireland.

    But in the main the relentless, 24-hour burden of keeping Lynn alive lay with Kay.
    I didn't know how she'd had the strength to bear it, year after year.
    She could only have kept going by clinging to a belief, however tenuous, that Lynn might one day recover.

    Sadly, to me it seemed a false belief and I asked myself how long even such a devoted mother would be able to sustain it.

    'It's like she's in limbo,' Kay told me. 'If someone dies you mourn them, then you get to a stage where you know that person is gone and you move on. But she is neither one nor the other. She is stuck in that room, not dead, but not alive properly. It is an awful place to be. If I didn't believe and she didn't believe, that one day she would get better then I don't think it would be right for her to go on suffering like this for a whole lifespan of 70 or 80 years.'

    Anger at the way many people, including doctors and nurses, persisted in believing that ME is some kind of self-induced 'yuppie flu' kept her going too.
    To Kay it was utter cruelty for people to imagine that Lynn would willingly choose her limbo existence.

    She lovingly pored over photographs of her pretty daughter enjoying the active life she led before she fell ill - receiving a trophy for ballet at the age of nine, as captain of the netball team at ten, going surfing, horseriding and windsurfing with her brother.

    Lynn also played the piano and clarinet and loved going to the youth club with her friends.
    Handling the precious images with infinite care, Kay said wistfully : 'We didn't realise how happy we were, until we lost it.'

    That loss came with shocking suddenness in November 1991, when Lynn felt unwell after a vaccination against tuberculosis.
    She struggled in to school the next day but was sent home sick and never returned.

    She developed flu, bronchitis, tonsillitis and glandular fever, one after the other.
    'By February she was really very ill and was in hospital,' said Kay : 'Her legs would give way, her memory was getting very poor, she was having awful pains all over her body and a constant, dreadful sore throat and she would often faint.'

    By May, 1992, ME had been diagnosed.
    Lynn was bedridden, had difficulty swallowing, couldn't recognise people and her voice had reduced to a whisper.
    'That first year was so terrible when we knew she was extremely ill but the tests didn't show anything,' added her mother : 'With every other disease you get kindness and sympathy but though Lynn was frightened and we were desperate for help, all we got was accusations that she was pretending. Sometimes she was in such pain, she would ask us, "What is going to happen to me ?" But we had no answers and neither did the doctors.'

    Nine months after she fell ill, Lynn could move no part of her body except her little finger, could not speak and had to be fed through a tube.
    Kay and Richard made the courageous decision to take her home : 'They said if we did, there was a risk she would die, but we felt there was a greater risk if she stayed in hospital and didn't get the peace and care she needed.'

    For the 16 years since then, Kay, who once trained as an auxiliary nurse, has provided that peace and care.
    There was a large fish tank beside Lynn's bed which she liked watching.
    She had a hamster which she played with in the afternoons and an iPod on which she listened to music and stories.

    She could move her arms and had developed a sign language to communicate with her family.
    I asked her if she was fed up with being like this and she held up her thumb and forefinger emphatically an inch apart, meaning : 'Just a bit !'

    Through her mother she also said that, though she was sad, she was not depressed.
    'I am not brave, I have no choice but to be hopeful, otherwise I would just give up,' Kay translated.

    Kay told me and I believed her, that she did not resent what Lynn's illness had done to her own life.
    It was her choice and her job to make her daughter's life as easy as possible and the only thing that would make her happy was Lynn's recovery.
    But she did resent 'whoever or whatever' made her so ill.

    'It's been heartbreaking to watch my child lose her faculties one by one,' she told me : 'She doesn't deserve it. It isn't fair. It's very hard for me to see mothers and daughters together or to hear a family in the garden having a barbecue with children running around.'

    At that time Lynn still had yearnings to have a baby.
    As I looked at her, without the strength even to lift her head from the pillow, I found such a pathetic hope heartbreaking.
    Kay was more realistic, hoping only that once the virus which caused her ME had burned itself out, everything else would start working again.

    'People do get better, even those as ill as Lynn,' she said : 'Every time I read of such a case I am pleased for them but I can't help wondering, when will it be her turn ? If she could come out of that room, it would be enough just to feel the air on our faces, see the sky, be part of the world. Lynn tells me she feels it is all out there, waiting for her to step back into.'

    When I heard of Lynn's death, I could only imagine that, finally, all hope of her ever feeling the air on her face again had died.
    And salute the courage, strength and love which had kept that hope alive for so long, through such appalling agony.


    Cfr. : http://www.dailymail.co.uk/health/article-1093016/Ive-seen-patients-paralysed-dying-Aids-victims-starving-children--Ive-seen-ill-Lynn.html#



    ME victim Lynn Gilderdale's mum suspected of killing her

    Antonella Lazzeri - The Sun, December 10, 2008


    Lynn, 31, looks pale and fragile and has a medical tube taped to her cheek as mother Kay tenderly nuzzles up to her.

    Last week Lynn was found dead from a suspected morphine overdose after being bedridden for 17 years by “yuppie flu” myalgic encephalomelitis.

    Within hours ex-nurse Kay, 54 — who shared a home with her daughter in Stonegate, East Sussex — was arrested and bailed by cops.

    Lynn is said to have tried to commit suicide twice in the past and officers are trying to discover if Kay helped her to die.

    Lynn was a normal active teenager until she was struck down with ME at 14 after a BCG jab.


    Cfr. : http://www.thesun.co.uk/sol/homepage/news/article2022473.ece



    Daughter death - Mother arrested

    Press Association, 10th December 2008


    The mother of an ME sufferer has been arrested by police on suspicion of murder after the death of her acutely ill daughter.

    Kay Gilderdale was released on bail pending further inquiries following the death of her daughter Lynn, 31, who was a prominent figure in campaigning for better understanding of the illness.

    Police were called to her home in Stonegate, near Heathfield, East Sussex, at 8.30am on Thursday.

    A spokeswoman for Sussex Police said : "A 54-year-old woman from Stonegate, arrested on suspicion of murder, has been interviewed and bailed to return on March 6."

    Kay Gilderdale provided round-the-clock care for her frail daughter alongside Lynn's father Richard.

    The investigation is being led by Detective Chief Inspector Andy Griffiths, from Sussex Police's Major Crime Branch.

    Rother district police commander Chief Inspector Heather Keating said : "This is a very tragic incident, but we are not looking for anyone else in connection with it."

    In a written tribute released through Sussex Police, Ms Gilderdale's family said : "Lynn was young, beautiful, loving and caring. At the age of 14 years she was struck down by ME - an illness greatly misunderstood - and, as a result, suffered the stigma attached to this dreadful illness. She fought long and hard for 17 years with immense bravery, enduring constant pain and sickness. Every system of her body was affected. She required 24-hour care that was provided by her totally dedicated mother, with continuous support from Lynn's father."

    Her family have vowed to continue to campaign for a "better understanding" of ME.

    Cfr. : http://www.pressassociation.co.uk/component/pafeeds/2008/12/08/daughter_death_mother_arrested?camefrom=home

     

    10-12-2008 om 23:15 geschreven door Jules

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    08-12-2008
    Klik hier om een link te hebben waarmee u dit artikel later terug kunt lezen.Vermoeidheidsklachten
    Klik op de afbeelding om de link te volgen




















     






    Vermoeidheidsklachten

    In : 'Heb ik misschien iets anders ?'
    © 2007 – pilliewillie.nl


    Fibromyalgie is niet de enige aandoening die vermoeidheid als klacht heeft.
    Vermoeidheidsklachten kunnen ook veroorzaakt worden door hypoglycemie, candida infectie, schildklierdeficiëntie, depressie en burnout en CVS/ME veroorzaken ook vermoeidheidsklachten.

    Er zijn echter een aantal eenvoudige vuistregels om vast te stellen om welke aandoening het gaat.

    Andere ziekten die qua klachten lijken op fibromyalgie


    Hypoglycemie (een lage schommelende suikerspiegel) verraadt zich doordat patiënten heel vaak honger hebben.
    Als ze niets of te laat eten staan ze te trillen als een espenblad, worden ze duizelig en moe.
    Hypoglycemie wordt behandeld door een streng dieet (geen suiker, weinig koolhydraten), chroom GTF suppletie, een rustig en regelmatig leven en veel geduld (6 - 9 maanden om precies te zijn).
    Als u wilt weten of er bij u sprake kan zijn van hypoglycemie, doe dan de
    online hypoglycemie test.


    Een candida infectie veroorzaakt ook vermoeidheid en kan worden vastgesteld aan de hand van een ontlastingsonderzoek.
    Als de patiënt met de behandeling begint (streng dieet zonder suiker en gist, medicijnen als nystatin) dan nemen de klachten de eerste 2 - 6 weken van de behandeling erg toe.
    Daarna verminderen de klachten langzaam.
    Als u wilt weten of er bij u misschien sprake is van een candida infectie gebruik dan deze
    online candida test.
    Bij een score van 90 of hoger kunt u overwegen om via de
    online therapeut knop (bovenaan elke PWK pagina) een ontlastingonderzoek aan te vragen.


    Een schildklierdeficiëntie kan ook klachten veroorzaken die overeenkomen met fibromyalgie, te weten : vermoeidheid, concentratie en geheugenstoornissen en spierpijnen.
    Maar een schildklierdeficiëntie veroorzaakt ook klachten die niet typisch zijn voor fibromyalgie : lage lichaamstemperatuur, gewichtstoename, droge huid, brosse nagels, obstipatie en menstruatieklachten.
    Dr. Barnes heeft een eenvoudige test ontwikkeld waarmee u zelf hypothyroïdie kunt diagnosticeren.
    Het gaat hier om een
    lichaamstemperatuurtest die moet worden uitgevoerd voordat u op staat.


    Depressie en burnout veroorzaken ook een langdurige vermoeidheid.

    Burnout is een andere naam voor 'chronische stress' als gevolg van een voor de patiënt verkeerde werksituatie.
    Burnout moet dus worden opgevat als een "bedrijfsongeval".
    Hierdoor kan er voor de behandeling van burnout een vergoeding van de werkgever verkregen worden.
    Veel "arbo-achtige" bedrijfjes zijn daarom op deze zeer lucratieve markt actief.
    Zij bieden een scala van diensten aan om burnout patiënten te helpen bij de behandeling en bij het re-integratie proces bij de werkgever.

    Bij een depressie en bij burnout type I (verhoogd cortisolniveau) verminderen de klachten door extra intensieve beweging, dat is bij fibromyalgie niet het geval.
    Bij een depressie en ook bij een burnout nemen de klachten gedurende een lange periode (maanden) langzaam toe.
    Bij fibromyalgie verloopt het ziektebeeld veel sneller.
    De klachten openbaren zich plotseling, bijvoorbeeld direct na een griepinfectie, lange periode van stress, ongeluk of operatie.


    CVS/ME en Fibromyalgie hebben een overlappend klachtenbeeld, maar er zijn ook verschillen :
    - (1) Patiënten met fibromyalgie of een depressie voelen zich vaak beter na extra beweging. CVS/ME-patiënten blijven vaak nog 24 uur lang moe na een extra inspanning.
    - (2) Bij CVS/ME-patiënten helpt rusten niet, bij fibromyalgie patiënten wel.
    - (3) Bij zowel fibromyalgie- als CVS/ME-patiënten komen allergieën voor. Bij CVS/ME-patiënten is het echter zo dat de moeheid minder wordt als er sprake is van een allergie aanval.


    Cfr. : http://fibromyalgie.pilliewillie.nl/fibromyalgie/behandeling.fibromyalgie.2a.php 



    08-12-2008 om 18:22 geschreven door Jules

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    Klik hier om een link te hebben waarmee u dit artikel later terug kunt lezen.Deficits of interference control in adolescents with chronic fatigue syndrome
    Klik op de afbeelding om de link te volgen






































    Deficits of interference control
    in adolescents with chronic fatigue syndrome

    Elise M. van de Putte, MD, PhD; Koen B. Böcker, PhD; Jan Buitelaar, MD, PhD; J. Leon Kenemans, PhD; Raoul H. H. Engelbert, PhD; Wietse Kuis, MD, PhD; Jan L. L. Kimpen, MD, PhD; Cuno S. P. M. Uiterwaal, MD, PhD (Jeroen Gerritsen, MSc, aided in the conduct of the study and the data collection and arrangement) – Correspondence : Dr van de Putte, University Medical Center Utrecht, PO Box 85090, 3508 AB Utrecht, the Netherlands : e.vandeputte@umcutrecht.nl - Arch Pediatr Adolesc Med. 2008;162(12):1196-1197 – The Pediatric Forum – PMID : 19047552 - Source : Michael Koolhaas, ME/CVS-discussielijst ME-PLATFORM (>me-platform@nic.surfnet.nl<), 04-12-2008


    Cognitive problems are key symptoms of chronic fatigue syndrome (CFS).
    Adults with CFS encounter difficulties completing complex information-processing tasks with considerable interference. (1)
    Performance on neuropsychological tasks have not been studied in adolescents with CFS.
    Considering our knowledge of adults with CFS, focusing on tasks with a high level of interference is most promising in differentiating adolescents with CFS from healthy adolescents.
    Interference control is the ability to protect a response from interruption by competing responses or events.
    One interference control paradigm is the Eriksen Flanker Task (EFT), in which a competing response to irrelevant information has to be inhibited. (2)
    We investigated whether adolescents with CFS show less interference control than healthy adolescents.
    We also explored the importance of confounding factors, such as depression and anxiety.


    Methods

    A total of 64 adolescents (aged 12-18 years) with severe fatigue were referred to the adolescent fatigue clinic at the University Medical Center Utrecht in 2004.
    The final diagnosis of CFS according to Centers for Disease Control and Prevention criteria (3) was established in 34 patients after extensive medical and psychological examinations.
    As a reference group, 102 adolescents aged 12 to 18 years from a secondary school were invited to participate.
    Adopted children or children with a chronic illness were excluded (n =3D 3).
    From the remaining 99 adolescents, 29 adolescents (29%) agreed to participate.


    Eriksen Flanker Task

    The original EFT was slightly modified and executed as described in other studies. (2)
    In this task, target arrows (greater than and less than signs) are presented on a computer screen requiring either a left-hand (<) or a right-hand (>) response.
    These arrows are presented alone or flanked by stimuli that call for the same (congruent) or neutral or opposite (incongruent) response with the hand.
    Subjects are instructed to focus on the target arrow, ignore the flankers and respond as accurately as possible.
    The EFT consisted of 192 stimuli trials with 48 trials in each condition : 48 targets alone (< or >), 48 congruent (<<<<<<< or >>>>>>>), 48 neutral (=3D =3D =3D < =3D =3D =3D or =3D =3D =3D > =3D =3D =3D) and 48 incongruent (>>><>>> or <<<><<<) targets.
    The different task conditions were serially presented (duration, 0.5 seconds) in randomized order in the middle of the visual field 70 cm from subjects' eyes.
    Subjects could press 1 of 2 buttons; the direction of the target arrow indicated whether a left- or right-hand button press was required.
    Participants had to respond within 1 second or the response would be scored as missed.


    Self-report Measures

    Fatigue was assessed dimensionally with the Checklist Individual Strength. (4)
    Depression was measured with a validated Dutch translation of the Children's Depression Inventory. (5)
    Assessment of trait anxiety was performed with a validated Dutch translation of the Spielberger State-Trait Anxiety Inventory for Children. (6)
    The medical ethics committee of the University Medical Center Utrecht approved the study.


    Statistical Analysis

    Data were analyzed with linear regression using the variable of interest as a dependent variable and a group indicator (patient =3D 1, control =3D 0) as an independent variable.
    Linear regression coefficients represent mean differences between adolescents with CFS and healthy adolescents for the investigated variable with corresponding 95% confidence intervals (CIs).
    The same models were used to adjust for confounders.
    The variables included in the multivariate model were significantly different between the 2 groups, except for sex.
    Model fit was assessed by evaluation of normality of the regression residuals distribution.
    Statistical significance was reached when the 95% CI did not include 0, which corresponds to P < .05.


    Results

    Adolescents with CFS were more fatigued in all measures (difference total score, 52; 95% CI, 42.4-61.6; P < .001).
    Symptoms of anxiety were more present in the adolescents with CFS (difference, 5.8; 95% CI, 2.4-9.1; P < .001) as were depressive symptoms (difference, 4.9; 95% CI, 2.7-7.2; P < .001).
    The Table presents results of the EFT.
    Performance on the incongruent trials was significantly worse in the CFS group (-13.9%; 95% CI, -21.8 to -6.0; P =3D .001).
    When age, sex, anxiety and depression were included in the model as possible confounding factors, the diminished performance persisted (-10.9%; 95% CI, -20.4 to -1.4).
    This worse performance was particularly evident in the incongruent trials that followed congruent trials, that is, those that induced the highest possible conflict.

    Table - Results of the Eriksen Flanker Test in Children With Chronic Fatigue Syndrome (CFS)
    [Note : unable to copy the table]


    Comment

    Our findings are in line with studies in adult CFS patients that show that the impairment in information processing is not fully explained by depression or anxiety. (7)
    Most research of impaired response inhibition has been in children and adolescents with attention-deficit/hyperactivity disorder and demonstrates an analogous diminished performance on incongruent trials of the EFT to adolescents with CFS.8 Attention-deficit/hyperactivity disorder has never been described as occurring with CFS or as predisposing individuals to CFS.
    Our findings support the notion that a decrease in conflict-monitoring abilities might be an important factor in the development of CFS.
    Additional longitudinal studies should investigate whether this is a consequence of CFS or a primary etiological factor.


    References

    1. Neuropsychology of chronic fatigue syndrome - A critical review
      Tiersky LA, Johnson SK, Lange G, Natelson BH, DeLuca J, Department of Physical Medicine and Rehabilitation, UMDNJ-New Jersey Medical School, Kessler Institute for Rehabilitation, West Orange 07052, USA - J Clin Exp Neuropsychol. 1997 Aug;19(4):560-86 - PMID: 9342690
      This article provides a comprehensive and critical review of the neuropsychological and related literature on chronic fatigue syndrome (CFS).
      Despite the methodological limitations observed in several studies, some consistent findings are noted.
      The most consistently documented neuropsychological impairments are in the areas of complex information processing speed and efficiency.
      General intellectual abilities and higher order cognitive skills are intact.
      Emotional factors influence subjective report of cognitive difficulty, whereas their effect on objective performance remains uncertain.
      Although the neuropathological processes underlying cognitive dysfunction in CFS are not yet known, preliminary evidence suggests the involvement of cerebral white matter.
      Directions for future research are outlined.
      Cfr. :
      http://www.ncbi.nlm.nih.gov/pubmed/9342690

    2. Conflict monitoring versus selection-for-action in anterior cingulate cortex
      Botvinick M, Nystrom LE, Fissell K, Carter CS, Cohen JD, Department of Psychology, Carnegie Mellon University, Pittsburgh, Pennsylvania 15213, USA : mmb@cnbc.cmu.edu - Nature. 1999 Nov 11;402(6758):179-81 - PMID: 10647008
      The anterior cingulate cortex (ACC), on the medial surface of the frontal lobes of the brain, is widely believed to be involved in the regulation of attention.
      Beyond this, however, its specific contribution to cognition remains uncertain.
      One influential theory has interpreted activation within the ACC as reflecting 'selection-for-action', a set of processes that guide the selection of environmental objects as triggers of or targets for action.
      We have proposed an alternative hypothesis, in which the ACC serves not to exert top-down attentional control but instead to detect and signal the occurrence of conflicts in information processing.
      Here, to test this theory against the selection-for-action theory, we used functional magnetic resonance imaging to measure brain activation during performance of a task where, for a particular subset of trials, the strength of selection-for-action is inversely related to the degree of response conflict.
      Activity within the ACC was greater during trials featuring high levels of conflict (and weak selection-for-action) than during trials with low levels of conflict (and strong selection-for-action), providing evidence in favour of the conflict-monitoring account of ACC function.
      Cfr. :
      http://www.nature.com/nature/journal/v402/n6758/abs/402179a0.html

    3. The chronic fatigue syndrome - A comprehensive approach to its definition and study
      International Chronic Fatigue Syndrome Study Group - Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A, Division of Viral and Rickettsial Diseases, National Center for Infectious Diseases, Centers for Disease Control and Prevention, Atlanta, GA 30333 - Ann Intern Med. 1994 Dec 15;121(12):953-9 - PMID: 7978722
      The complexities of the chronic fatigue syndrome and the methodologic problems associated with its study indicate the need for a comprehensive, systematic and integrated approach to the evaluation, classification and study of persons with this condition and other fatiguing illnesses.
      We propose a conceptual framework and a set of guidelines that provide such an approach.
      Our guidelines include recommendations for the clinical evaluation of fatigued persons, a revised case definition of the chronic fatigue syndrome and a strategy for subgrouping fatigued persons in formal investigations.
      Cfr. :
      http://www.ncbi.nlm.nih.gov/pubmed/7978722

    4. Dimensional assessment of chronic fatigue syndrome
      Vercoulen JH, Swanink CM, Fennis JF, Galama JM, van der Meer JW, Bleijenberg G, Department of Medical Psychology, University Hospital, Nijmegen, The Netherlands - J Psychosom Res. 1994 Jul;38(5):383-92 - PMID: 7965927
      The absence of laboratory tests and clear criteria to identify homogeneous (sub)groups in patients presenting with unexplained fatigue and to assess clinical status and disability in these patients, calls for further assessment methods.
      In the present study, a multi-dimensional approach to the assessment of chronic fatigue syndrome (CFS) is evaluated.
      Two-hundred and ninety-eight patients with CFS completed a set of postal questionnaires that assessed the behavioural, emotional, social and cognitive aspects of CFS.
      By means of statistical analyses nine relatively independent dimensions of CFS were identified along which CFS-assessment and CFS-research can be directed.
      These dimensions were named :
      - psychological well-being,
      - functional impairment in daily life,
      - sleep disturbances,
      - avoidance of physical activity,
      - neuropsychological impairment,
      - causal attributions related to the complaints,
      - social functioning,
      - self-efficacy expectations and
      - subjective experience of the personal situation.
      A description of the study sample on these dimensions is presented.
      Cfr. :
      http://www.ncbi.nlm.nih.gov/pubmed/7965927

    5. Psychometric evaluation of the Dutch Children’s Depression Inventory
      Psychometrische evaluatie van de Nederlandstalige Children’s Depression Inventory
      Benedikte Timbremont & Caroline Braet - Gedragstherapie, 2001, 34(3), 229-242
      Due to the growing interest for depression in children, there is a need for age-appropriate assessment instruments.
      This study examines the psychometric value of a Dutch translation of the Children’s Depression Inventory (CDI) in a non-clinical sample, aged 10-15 (N = 663).
      Good internal consistency, test-retest reliability and construct validity are reported.
      Less evidence was found for the divergent validity, which may in part be due to the high comorbidity between depression and other disorders (e.g. anxiety and behavioral problems).
      Factor analyses revealed developmental differences relating to the CDI structure.
      For younger children (primary school, aged 10-12) ‘core’ depressive symptoms loaded on the same factor as self-reported misbehavior, whereas for high school students (aged 12-15 ) cognitive and affective symptoms of depression appeared to be independent of behavioral problems.
      Practical applications of the CDI are discussed as an initial screening instrument or as an evaluation instrument.
      Cfr. :
      http://home.planet.nl/~tgth/2001/2001abs.htm
      Cfr. also :
      - De Nederlandstalige Sense of Coherence vragenlijst voor Kinderen
      Cfr. :
      http://www.lichamelijkeklachten.leidenuniv.nl/content_docs/soc.pdf
      - Dutch Sense of Coherence Questionnaire for children
      Cfr. :
      http://www.focusonemotions.nl/index.php?option=com_content&view=article&id=62&Itemid=67
      - De Comorbiditeit van Depressie en Angst bij Adolescenten
      Cfr. :
      http://dare.uva.nl/document/14941

    6. The anxiety thermometer - A validation study
      Houtman IL, Bakker FC - J Pers Assess. 1989 Fall;53(3):575-82 - PMID: 2778618
      The aim of our study was to provide validation and reproducible data for the anxiety thermometer.
      This thermometer is either a continuous or a 10-point Likert-type scale on which subjects are asked to rate their anxiety feelings at a particular moment.
      It is a quick way to measure state-anxiety.
      As a validation criterion the State-Trait Anxiety Inventory (STAI) A-State scale was used.
      To test the reproducibility of the thermometer, a test-retest correlation coefficient was calculated, with a retrospective second thermometer score.
      The ego-threatening situation used was a written examination.
      Two experiments were carried out during different examination conditions.
      The data consistently indicated that the validity and reproducibility of the anxiety thermometer is fair (correlation coefficients between .60 and .78).
      In the second study, the possible influence of two factors on the retrospective scores were additionally tested.
      Cfr. :
      http://www.ncbi.nlm.nih.gov/pubmed/2778618?dopt=Abstract

    7. Cognitive functioning is impaired in patients with chronic fatigue syndrome devoid of psychiatric disease
      J. Deluc (1,2), S.K. Johnson (1,2), S.P. Ellis (1) & B.H. Natelson (1) -- (1) University of Medicine and Dentistry of New Jersey, New Jersey Medical School, Newark, NJ, Etats-Unis -- (2) Kessler Institute for Rehabilitation, West Orange, NJ, Etats-Unis - Journal of neurology, neurosurgery and psychiatry, 1997, vol. 62, no2, pp. 151-155 (46 ref.) - ISSN : 0022-3050 - BMJ, London, Royaune-Uni (1944) (Revue) - © 2008 INIST-CNRS
      Objective - To examine the effect of the presence or absence of psychiatric disease on cognitive functioning in chronic fatigue syndrome.
      Methods - Thirty six patients with chronic fatigue syndrome and 31 healthy controls who did not exercise regularly were studied.
      Subgroups within the chronic fatigue syndrome sample were formed based on the presence or absence of comorbid axis I psychiatric disorders.
      Patients with psychiatric disorders preceding the onset chronic fatigue syndrome were excluded.
      Subjects were administered a battery of standardised neuropsychological tests as well as a structured psychiatric interview.
      Results - Patients with chronic fatigue syndrome without psychiatric comorbidity were impaired relative to controls and patients with chronic fatigue syndrome with concurrent psychiatric disease on tests of memory, attention, and information processing.
      Conclusion - Impaired cognition in chronic fatigue syndrome cannot be explained solely by the presence of a psychiatric condition.
      Cfr. :
      http://cat.inist.fr/?aModele=afficheN&cpsidt=2581625

    8. Perceptual and response interference in children with attention-deficit hyperactivity disorder and the effects of methylphenidate
      Jonkman LM, Kemner C, Verbaten MN, Van Engeland H, Kenemans JL, Camfferman G, Buitelaar JK, Koelega HS, Faculty of Pharmacy, Department of Psychopharmacology, Rudolf Magnus Institute for Neurosciences, Utrecht University, The Netherlands : L.Jonkman@psychology.unimaas.nl - Psychophysiology. 1999 Jul;36(4):419-29 - PMID: 10432791
      Fourteen children with attention-deficit hyperactivity disorder (ADHD) and 14 normal control children were compared with respect to stimulus- and response-related processes.
      Subjects with ADHD took part in two additional sessions under methylphenidate or placebo.
      In both experiments, performance and electrophysiological measures such as the P2, N2 and P3 components of event-related potential and electromyogram (EMG) activity were measured during an Eriksen flanker task.
      In both groups of children, reaction times (RTs) to arrow stimuli incongruent with the target were longer than those to neutral stimuli (response interference), which were again slower than RTs to target-alone stimuli (perceptual interference).
      Children with ADHD made more errors to incongruent stimuli and showed more response interference.
      For correct responses, no differences between the groups in response interference effects on reaction time, P2, N2, and P3 latency or EMG onset were found.
      Methylphenidate had a general enhancing effect on accuracy but did not specifically reduce interference from the flanking stimuli.
      Methylphenidate had no effects on RT, N2 and P2 latency, P3 amplitude or latency or EMG activity.
      The conclusion that methylphenidate did not influence response processes contrasts sharply with findings reported by authors using the Sternberg memory search task.
      Cfr. :
      http://www.biomedexperts.com/Abstract.bme/10432791/Per
      ceptual_and_response_interference_in_children_with_attention-deficit_hyperactivity_disorder_and_the_effects_of_methy


    Cfr. : http://archpedi.ama-assn.org/cgi/content/extract/162/12/1196



    08-12-2008 om 11:33 geschreven door Jules

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