Chiropractie - Vrijspraak voor Simon Singh in smaadzaak
Chiropractie Vrijspraak voor Simon Singh in smaadzaak
Martijn van Calmthout – de Volskrant, 02-04-2010
AMSTERDAM - De Britse wetenschapsjournalist Simon Singh heeft met zijn felle campagne tegen chiropracters geen smaad gepleegd, maar normale kritische vragen gesteld bij de werkzaamheid van een alternatieve geneeswijze.
Dat heeft het hoogste Britse hof donderdag geoordeeld in een al twee jaar slepende zaak van de vereniging van chiropracters tegen Singh. Eerder had de Hoge Raad geoordeeld dat de zaak van de beroepsvereniging tegen Singh een smaadzaak was.
Het gevolg was dat Singh in dat geval zou moeten aantonen dat chiropractische behandelingen, waarbij het lichaam wordt gemasseerd en gewrichten gerekt, niet werken tegen darmklachten en astma, zoals hij in krantenstukken had verondersteld. Daarmee werd de bewijslast omgedraaid. Singh had in krantenartikelen in The Guardian in 2008 de beroepsgroep gevraagd te bewijzen dat behandelingen wel werken.
De zaak werd onder Britse wetenschappers en journalisten met grote belangstelling gevolgd, omdat het de speelruimte voor kritiek op alternatieve geneeswijzen ernstig zou kunnen inperken. Dat lijkt nu niet het geval.
Singh zei in een reactie op het vonnis gelukkig te zijn met het oordeel van de hogerechters, maar memoreerde dat de kwestie hem hoe dan ook 200 duizend pond aan juridische bijstand heeft gekost : ‘Geen wonder dat critici wel tweemaal nadenken over wat ze zeggen en schrijven.’
De voorzitter van de Britse vereniging van chiropracter toonde zich teleurgesteld over de uitspraak, maar zei nog mogelijkheden te zien voor verdere acties tegen Singh.
De Steungroep ME en Arbeidsongeschiktheid roept ME/CVS patiënten op om mee te werken aan onderzoek van TNO naar de Wet tegemoetkoming chronisch zieken en gehandicapten (WTCG).
Op grond van de WTCG kunnen ouderen, arbeidsongeschikten en mensen die veel zorg gebruiken tegemoetkomingen krijgen die variëren van 150 tot 500 euro per jaar. Dit als compensatie voor hoge meerkosten.
Het onderzoek is bedoeld om na te gaan hoe op een betere manier kan worden bepaald of iemand voor zo'n tegemoetkoming in aanmerking komt en tot welk bedrag.
Door de criteria die hiervoor nu gelden vallen bepaalde groepen buiten de boot. Enkele van die criteria zijn gekoppeld aan medicijngebruik of ziekenhuisbehandeling voor bepaalde aandoeningen. Hierbij vallen ME/CVS-patiënten buiten de boot. Alleen voor kinderen met ME/CVS die in een ziekenhuis behandeld worden ligt er nu een plan om dit aan te passen. Maar ook volwassenen met ME/CVS hebben door hun ziekte vaak forse meerkosten en niet alleen wanneer zij in een ziekehuis behandeld worden.
Op grond van criteria die niets met de behandeling van ME/CVS te maken hebben kunnen ME/CVS-patiënten soms wel in aanmerking komen voor een (gedeeltelijke) tegemoetkoming. Dit is bijvoorbeeld het geval bij het krijgen van een bepaalde hoeveelheid huishoudelijke hulp via de Wet Maatschappelijke Ondersteuning (WMO) of bij een arbeidsongeschiktheid van minstens 35%. Het TNO-onderzoek zou kunnen bijdragen aan voorstellen die meer recht doen aan de positie van ME/CVS-patiënten.
Het invullen van de vragenlijst gaat via internet en duurt volgens de onderzoekers ongeveer een half uur. Het is een algemene vragenlijst, waardoor iemand met ME/CVS zich niet in alle vragen zal herkennen (ergens 'zin' in hebben is bijvoorbeeld heel iets anders dan ergens 'energie' voor hebben). Maar als je je daar overheen zet is er redelijk ruimte om je beperkingen en meerkosten door te geven.
Cfr. voor informatie over het onderzoek en vragenlijst 'TNO-onderzoek naar afbakening Wtcg' op : www.tno.nl/wtcg -.
Magical Medicine - How to make a disease disappear
Magical Medicine : How to make a disease disappear
Press Relaese - Medical Research Council, 12th February 2010 Contact : Professor Malcolm Hooper (tel. : +44 191 528 5536)
A formal complaint has been lodged by Professor Malcolm Hooper with the Rt. Hon The Lord Drayson, Minister of State with responsibility for the Medical Research Council (Science and Innovation) about the “PACE” Clinical Trial of behavioural modification interventions for people with Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS).
PACE is the acronym for 'Pacing, Activity and Cognitive behavioural therapy', a randomised Evaluation, interventions that, according to one of the Principal Investigators, are without theoretical foundation.
The MRC’s PACE Trial seemingly inhabits a unique and unenviable position in the history of medicine. It is believed to be the first and only clinical trial that patients and the charities that support them have tried to stop before a single patient could be recruited and is the only clinical trial that the Department for Work and Pensions (DWP) has ever funded.
Since 1993, the giant US permanent health insurance company UNUMProvident has been advising the UK DWP about the most effective ways of curtailing sickness benefit payments. The PACE Trial is run by psychiatrists of the Wessely School, most of whom work for the medical and permanent health insurance industry, including UNUMProvident.
These psychiatrists insist – in defiance of both the World Health Organisation and the significant biomedical evidence about the nature of it -- that “CFS/ME” is a behavioural disorder, into which they have subsumed ME, a classified neurological disorder whose separate existence they deny. Their beliefs have been repudiated in writing by the World Health Organisation.
In 1992, the Wessely School gave directions that in cases of ME/CFS, the first duty of the doctor is to avoid legitimisation of symptoms; in 1994, ME was described by Professor Simon Wessely as merely “a belief”; in 1996 recommendations were made that no investigations should be performed to confirm the diagnosis and in 1999 patients with ME/CFS were referred to as “the undeserving sick”.
The complaint is supported by a 442 page Report which addresses areas of major concern about the PACE Trial.
These include apparent coercion and exploitation of patients, flawed methodology, apparent lack of scientific rigour, apparent failure to adhere to the Declaration of Helsinki, the unusual personal financial interest of the Chief Investigator, the vested financial interests of the Principal Investigators and others involved with the trial and the underlying non-clinical purpose of the trial.
The psychiatrists’ unproven beliefs and assumptions are presented as fact and trial therapists have been trained to provide participants with misinformation; therapists have also been trained to advise participants to ignore symptoms, a situation that may in some cases result in death.
There are some extremely disquieting issues surrounding the MRC PACE Trial and documents obtained under the Freedom of Information Act allow the full story to be told for the first time.
People with ME/CFS do not seek any special consideration; they simply wish to be treated equally to those who suffer from other classified neurological disorders.
As shown in the Report that accompanies the complaint, the MRC PACE Trial clearly demonstrates that people with ME/CFS are not treated equally to those with other chronic neurological disorders.
Chronic fatigue syndrome is an illness characterized by a profound, disabling and unexplained sensation of fatigue lasting at least 6months, which severely impairs daily functioning and is accompanied by a combination of non-specific symptoms. Many potential causes of chronic fatigue syndrome have been investigated, including viral infections, immune dysfunctions, abnormal neuroendocrine responses, central nervous system abnormalities, autonomic dysfunctions, impaired exercise capacities, sleep disruptions, genetic backgrounds, psychiatric abnormalities, personality and abnormal psychological processes. However, no etiology, specific physical signs or laboratory test abnormalities have been found. It is essential to establish a conceptual theory of chronic fatigue syndrome that can explain its pathophysiology in order to identify the clinical entity and to develop effective treatment methods. In this article, a new conceptual hypothesis about the pathophysiology of chronic fatigue syndrome, the co-conditioning theory, is presented : after repetitive overwork and/or stress, alarm signal to rest and fatigue sensation may cause in response to an unconditioned stimulus (impaired homeostasis and function) that has been paired with a conditioned stimulus (overwork and/or stress). In the future, a new treatment strategy for patients with chronic fatigue syndrome, re-co-conditioning therapy, may be developed on the basis of the co-conditioning theory. In addition, this theory will likely contribute to a better understanding of the pathophysiology of chronic fatigue syndrome.
A light in the darkness - Good news ahead for XMRV ?
Dr. Lucinda Bateman, M.D.
A light in the darkness
- Good news ahead for XMRV ? -
Phoenix Rising, March 26th, 2010
A month ago the head Dutch researcher, Kuppeveld, stated that he considered XMRV story over. After what he described as an intense effort to find the virus failed he was folding up shop on it; there would be no more XMRV studies coming out of his lab.
No papers have been published since then but it appears that a decidedly different story is brewing in Utah. We had heard that the three dozen or so people who participated in the Light’s fascinating exercise study were brought back to get tested for XMRV. What we didn’t know is that that study has recently been expanded - greatly. Since one thing researchers do not do is repeat negative studies, the only logical conclusion we can draw is that enough CFS patients tested positive for XMRV to make a greatly expanded and obviously much more expensive study worthwhile. These patients and we don't know how many were positive, appear to be the first patients who’ve tested positive at an independent laboratory. The XMRV story may be over in Holland but it appears to be gathering steam in Utah.
Luckily, CBS, a member of the Phoenix Rising Forums is participating in the new study and was willing to give us some insights into what's happening. First the new study consists of about 100 CFS patients, hand-picked by Dr. Lucinda Bateman - http://www.fcclinic.com/about_dr.html - and about 200 healthy controls. Dr. Light appears to a major fundraiser for the study - plucking money out of every corner he can. Dr. Singh, a noted retrovirologist already steadying XMRV in prostate cancer, will supervise the analysis of the samples. ARUP - the research laboratory associated with the University of Utah - is providing facilities and manpower.
When CBS showed up for his blood draws he stepped into a highly professional environment. He signed in and rounded the corner to find a hallway full of techs with stopwatches. As each of approximately 6 vials of blood were drawn, the gloved phlebotomist immediately handed it to a gloved tech who set his/her stopwatch and hustled out of the room to the next location. The collecting receptacles were swabbed with alcohol after each patient.
Dr. Bateman’s role in this is interesting. Her video presentation about XMRV several months ago was notable for her sober approach to it is and she appeared quite concerned about how well her patients matched up with the apparently immune dysfunctional patients in the Science study. Although we can't know for sure it appears that something has changed in her outlook on XMRV. She stated that all parties were working around the clock on this. These researchers moved fast - it took them about a week or two to process get several hundred samples. They’re doing PCR, antibody and culture tests. CBS expects to get his results in about eight weeks and the researchers are banking blood as well - so expect more studies to follow this second study if it works out well.
ARUP is by no means an ordinary lab. Employing 2,400 people it is a ‘national reference laboratory’ that specializes in ‘innovative laboratory research and development. The website states that ARUP chooses to provide "highly complex and unique lab tests". The Light/Bateman/Singh/ARUP team will not be looking at one sample multiple times or testing multiple samples from one patient to get one positive result. Nor will they accept ‘dim bands’ on the PCR as positives (a critique given to the Science paper). This will be a one sample one patient, clearly defined PCR result study and logically this is what we should expect over time as larger, more sophisticated labs further refine XMRV testing procedures. This is surely what Dr. Peterson meant at the CFSAC meeting when he said the WPI needed other researchers to pick up the ball and run with it.
Dr. Bateman is well known for her well characterized patients and her fine-tuned sense of the different subsets present in CFS and FM. She stated that she believed this study will provide definitive evidence of how prevalent XMRV is in a broad swath of CFS patients.
The Dr’s Light (there are two of them) role in this is intriguing as well. Dr. Alan Light came up with the scintillating study that found greatly increased receptor levels to substances like lactic acid in CFS patients. He is a pain researcher, not a retrovirologist - but it appears that both he and his wife are giving this study every kind of support that they can. We should be thankful for researchers that are able to leap over professional boundaries when needed.
The Montoya-Goff Study - CBS is also the patient of Dr. Montoya’s. He noted that Dr. Goff, another celebrated retrovirologist, is working with the Montoya team in Stanford on his XMRV study - another sign that XMRV is still alive and well in the research community, at least on this side of the Atlantic.
ARUP and Blood Testing - Please do not try to get your blood tested at ARUP. Dr. Bateman emphasized that ARUP is not open for commercial testing of XMRV and does not want to be flooded with requests for that.
Conclusion - While we don’t have any published papers we do appear to have the next best thing; signs that several researchers associated with a reputable independent lab are having success finding this virus in ME/CFS patients and, in fact, are redoubling their efforts to look further.