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.
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?