Professors Silje Endresen Reme, Signe Flottorp and Vegard B. B. Wyller wrote about «Facts and myths about ME» in Aftenposten on 25th October 2022.
The past weeks ME debate which they refer to, has its origin in comedian Harald Eia ridiculing ME sufferers: “The ridicule in Harald Eia’s podcast is just one of many moves” (Norwegian text).
Reme, Flottorp and Wyller claim that it has been thoroughly documented that «cognitive behavioral therapy and graded exercise therapy can make many ME patients feel better.»
That is not true.
The British guidelines for ME/CFS are based on e.g. evaluation of 236 study outcomes with cognitive behavioral therapy and graded exercise therapy as treatment for ME. The quality is assessed as low or very low for all of them. None of the studies are of acceptable quality and are therefore irrelevant.
Reme, Flottorp and Wyller fail to mention that the Cochrane-review from 2004 (Larun et.al), to which they refer, has been revised a number of times and is currently undergoing a new, full review. The reason is, among other things, that it reflects evidence from studies that applied definitions of ME/CFS from the 1990s. The world has moved forward since then.
Reme, Flottorp and Wyller write that «It is fraudulent to claim that there is scientific evidence that such treatments make patients deteriorate.» They refer to an article [which I have published] written by Jørn Tor Haugen, with an overview of 14 studies which objectively document that these methods can be harmful.
Alleging fraudulence, they call into question the integrity of a number of professionals, including Mark Vink, Marjon E. A. Wormgoor, Brian M. Hughes, Keith J. Geraghty, Charlotte Blease, David Tuller, and J. André Knottnerus.
The cardinal symptom
It is widely agreed that ME/CFS is a serious, complex, chronic medical condition that affects most body systems. More and more countries have stopped recommending behavioral therapy and graded exercise as curative treatment.
There is also broad agreement that post-exertional malaise, PEM is a cardinal symptom of ME. Most of the studies Reme, Flottorp and Wyller refer to were executed without PEM as an inclusion criterion. In other words, it is uncertain whether any of the study participants had ME at all.
It is disconcerting that the authors believe Wyller’s stress hypothesis is correct, while the world’s largest health authorities and science mediators such as the CDC, NIH, IOM/NAM and NICE are allegedly wrong.
Health professionals must stop spreading outdated and disproved myths about ME. It harms us.
(This is an English version of an opinion piece published in the Norwegian newspaper Aftenposten on 28th October 2022- see Norwegian text here.)
Nina E. Steinkopf, former HSEQ Chief Executive, now: ME-patient – and Jørn Tore Haugen, M.Sc. Engineer and ME-patient