Tijd voor openheid omtrent het falen van CBT en GET bij ME en CVS

Een wetenschappelijk schandaal in Groot-Brittannië waar Nederlandse wetenschappers bij betrokken zijn.

In 2011 publiceerde een Britse groep wetenschappers in The Lancet de resultaten van de PACE-trial.

De PACE-trial is het grootste onderzoek ooit naar de behandeling van het chronisch vermoeidheidssyndroom (CVS). http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract

Kern van het verhaal is dat CVS (ook ME genoemd) volgens deze onderzoekers berust op false illness beliefs van de patiënten en dat Cognitieve GedragsTherapie (CBT) en graduele oefentherapie (GET) leiden tot herstel.

Twee Nederlandse vermoeidheidswetenschappers die in nauwe verbinding staan met deze Britse onderzoekers, prezen de PACE-trial in datzelfde nummer van The Lancet. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60172-4/abstract 

Vanaf de eerste publicatie hebben patiënten tegen dit onderzoek geageerd. Zij geven aan dat er gerommeld is en dat deze behandelingen schadelijk kunnen zijn. Dat werd door de auteurs én door de hoofdredacteur van The Lancet afgedaan als het geroep van een kleine militante groep. Zij weigerden hun ruwe data ter beschikking te stellen.

De laatste jaren hebben zich echter heel wat wetenschappers bij dat commentaar aangesloten. http://www.virology.ws/2017/03/13/an-open-letter-to-psychological-medicine-about-recovery-and-the-pace-trial/

Zowel in eerste aanleg als in hoger beroep zijn de onderzoekers veroordeeld om de gegevens ter beschikking te stellen. De gegevens zijn opnieuw geanalyseerd en er is vastgesteld dat zij inderdaad geknoeid hebben. http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724

Inmiddels is de PACE-trial berucht om de vele wetenschappelijke misdragingen en vanwege het feit dat een aantal van de onderzoekers betaald wordt door verzekeringsmaatschappijen die belang hebben bij de gepresenteerde uitkomsten.

Onlangs is een volledig nummer van het Journal of Health Psychology aan deze zaak gewijd. http://journals.sagepub.com/toc/hpqa/22/9 waarin ook een Nederlandse bijdrage is opgenomen.

De hoofdredacteur van het JHP is duidelijk: ‘(…) It reveals an unwillingness of the co-principal investigators of the PACE trial to engage in authentic discussion and debate. It leads one to question the wisdom of such a large investment from the public purse (£5million) on what is a textbook example of a poorly done trial.’

https://www.linkedin.com/feed/update/urn:li:activity:6304700229547630592

In Nederland is er ook veel te doen over de behandeling van CVS/ME. In 2016 is een speciale commissie van de Gezondheidsraad ingesteld om advies uit te brengen aan de Tweede Kamer over deze ziekte. Die commissie is nu nog aan het werk. In die commissie zijn ook onderzoekers benoemd die betrokken zijn bij het misleidend vermoeidheidsonderzoek. Bij de Gezondheidsraad loopt niet alles zoals het hoort: https://corsius.wordpress.com/2016/07/01/brief-aan-tweede-kamer-over-onjuiste-informatie-door-gezondheidsraad/  https://www.youtube.com/watch?v=P7mVjlO7onc&t=615s

Vanuit onverwachte hoek komt steun voor degenen die de gebrekkige kwaliteit en de misleidende resultaten van de Britse en Nederlandse onderzoeken aan de orde stellen:

Jim Faas, verzekeringsgeneeskundige en jurist, medisch adviseur directoraat Bezwaar& Beroep UWV, roept via Medisch Contact zijn collega’s op om minder stellig te zijn in het adviseren van cognitieve gedragstherapie en graduele oefentherapie. https://www.medischcontact.nl/opinie/blogs-columns/blog/ongemakkelijke-onwaarheden.htm?forum=58479&pagenr=1#reacties

Prof. dr. Cohen Tervaert is lid van de commissie van de Gezondheidsraad. Hij geeft aan dat het een mythe is dat ME/CVS een psychische ziekte is. https://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12026/Mythe-ME-is-een-psychische-ziekte

Ondanks alle kritiek blijven de vermoeidheidsonderzoekers doorgaan met misleidend onderzoek. Er staat nu een tweede onderzoek in Groot-Brittannie op stapel dat gebaseerd is op het Nederlandse FITNET. Dat gaat over CBT bij jongeren via internet. Op het FITNET onderzoek is stevige kritiek. Ook in dit onderzoek zijn wetenschappelijke principes met voeten getreden. De definitie van herstel werd post hoc vastgesteld (achteraf dus) waarbij mensen die ernstig ziek zijn als hersteld worden beschouwd.  http://www.mdpi.com/2076-328X/7/3/52

Zowel in Groot-Brittannië als in Nederland wordt er weinig in de pers vermeld over de misstanden. Het wordt zelfs actief uit de pers geweerd. https://www.linkedin.com/feed/update/urn:li:activity:6303556260008722432

Wel wordt er regelmatig ruim aandacht gegeven aan de resultaten van onderzoek die zouden aantonen dat CBT en GET werken bij mensen met CVS.

Ik hoop dat er in de pers aandacht komt voor het tegengeluid en dat er snel een einde komt aan deze wetenschappelijke wantoestanden zeker nu er volop bewijs wordt gevonden voor de fysieke aard van deze ziekte.

https://www.omf.ngo/2017/07/02/agenda/ 

 

 

Advertenties

MUPS

 

Doctors have been drifting away from real medicin. Instead of taking their own profession seriously they let certain psychologists and psychiatrists take over. To cover up for their lack of expertise they have introduced MUPS, medically unexplained physical symptoms.
A recent example. Last year a patient had a terrible itch on the inside of underarms and wrists as well as in the pubic area. The dermatologist looked at it from behind the computer and said: it is defenitely a fungal infection. He prescribed some ointments, but after a month the patient still had an incredible itch. He went back to the hospital. Since the dermatologist was away visiting a scientific meeting, a colleague took over in his place. This second doctor, an older man took a big magnifying glass and observed the skin very thoroughly. He found out the patient suffered from scabies. The patient was sent home with the appropriate medication and an advice how to handle cloathes and desinfect the house. The complaints disappeared completely.
But then, three weeks ago, the complaints came back. The patient went back to his own dermatologist, the first one. He told the doctor that the scabies had returned. The dermatologist was convinced this was no scabies. No signs could be found. The rash that was visible, was the result of patients own scratching. Since no signs could be found, the dermatologist sent the patient to a psychologist. He thought the patient persevered in his old complaints. According to the doctor the itch had a psychological ground.
The patients partner, who in the mean time had developed the same symptoms, did not accept this approach. They went both for a second opinion to the second dermatologist. The same procedure with the magnifying glass took place and again the conclusion was scabies. To be sure they did some labtests that confirmed the diagnosis scabies.
No false illness beliefs here, just a lack of expertise. No medically unexplained physical symptoms but medics unfounded pseudoscientific stupidity.

Incovenient (un)truth

This is  a translation I made to make this text available for people with ME outside the Netherlands

It is a column Jim Faas wrote in Medisch Contact. Jim Faas is Insurance physician and lawyer.

The ‘renowned’ PACE trial, based on CBT (cognitive behavioral therapy) and GET (graded exercise therapy) as treatment of first and second choice for the disorder, would be worthless. Sloppy science. In the US and UK big news, but not overhere; I don’t know why. Now, this disease has been a battlefield for years, where desperate patients, indignant political activists and scientists who know best (they think) fight fearcely.

Caution therefore.

I often find it difficult to appreciate such a complicated English-language article. One can understand the text, but a serious critical appraisal? You won’t find that easily. Is the research plan correct, are the right patients included, is it based on a good baseline measurement, were the appropriate instruments used to measure impact, who decided for what reasons, what do the findings really mean, etc, etc.? You need specialists,  you can trust. Intelligent senior retired scientists, for example, who have nothing to lose. Somebody who can also be a pain in the ass (LC: I couldn’t find a better translation). Take Emeritus Professor of Psychology James Coyne and his fight against discarded research money and scientists who derive their status from disputable research. The positive psychology (the if-you-think-positively–that-will- enhance-your-recovery mantra) and the inescapable mindfulness hype are on the dissection table. Very nice to read. Coyne also shares his vision on CFS / ME researchers

What is going on? In 2011, the English PACE trial was published, the hitherto largest CBT and GET study into CFS / ME. Conclusion: CBT and GET are effective: 22 percent of patients recover. However, further analysis shows that the researchers changed their own definition of recovery significantly during the study. As a consequence, an overlap occurred in sick and recovered. A portion (13%) of patients had already been partially recovered at the start of the trial. Let alone the participants who worsened during and after treatment. Enough reason for skepticism. The five (!) Year-old legal battle to obtain and verify the data of this five million pound research is an outright soap. The researchers did not want to give in to “incompetent critics”, claiming to be physically threatened and being victims of an organized campaign of fanatics. The British judge found that excessive, in fact incorrect and ultimately judged that the data had to be handed over based on the “Freedom of Information Act”.

For many years, we have been urged to utilize CBT and GET treatments: hardly reasonably scientifically underpinned? Patients have been fighting against it for years. What we think is strange because why should one refuse to participate in a treatment that will enhance your recovery? Up to the Central Appeals Board (see footnote) it has been discussed. Benefits and facilities have been rejected based on the argument, “There is a treatment that enhances your recovery, I expect you to follow it.”

Is the multidisciplinary guideline CFS still correct? The Centers for Disease Control (CDC) have just removed these treatment options in an update. Is it true that there is no benefit, but there is potential harm? That is a confusing development for patients and insurance doctors as well. We thought patients were on the right track, but we have been left empty handed. I am confused. What is the right thing to do? I quote GP and insurance doctor Mark Vink; His Pace trial analysis received a nomination for the 2016 John Maddox Science Prize: “It is in everyone’s interest that ME patients get back to work as soon as possible and are no longer eligible for benefits (LC: this is a PACE-quote) Reassessments of the PACE trial have now shown that it will never happen applying CBT and GET. ”

If this is correct, we need to change our approach.

Recap: There is a scientific dispute about the quality of research into the effectiveness of CGT and GET at CVS / ME. This dispute degenerates in shaming and blaming. Based on those contested studies and therapies, guidelines have been written. What should one do now as a practitioner or insurance doctor? How can one Judge what is right and what is wrong? At the same time, we are the ones who have to advise and judge – and we can be hold responsible for that. What is sensible to do in such a situation? I say: do not participate in this game. Our position is in a seat at the back. Until the scientists come to a reasonable conclusion we should refrain from too firm judgements. Quite reasonable, right?