Thread by @KunstJonas

For almost two decades, the "PACE" trial has misguided the treatment of people with #MECFS based on highly questionably and invalid research. Today, the UK health authorities acknowledged the flawed body of evidence, abandoning the recommendation of Graded Exercise Therapy. 1/

https://twitter.com/KunstJonas/status/1382407699414061058

The hallmark symptom of MECFS is that patients get *much* worse after physical exertion. Moreover, large patient surveys show that programs that require them to gradually increase their physical activities do not improve their condition but often lead to a permanent worsening. 2/

YES, this goes against the common intuition and mantra that "everyone gets better by exercising". This is *not* true for MECFS (and likely #LongCovid), regardless of how often certain people repeat it in the media. Please let this sink in. 3/

Despite this evidence being readily available, a group of scholars have continued to build their careers arguing beside others that MECFS is caused by "health anxiety". I.e., they have gaslighted patients into believing that their condition is primarily psychological. 4/

What is even more shocking, many of these scholars have glaring conflicts of interest as they work as consultants for insurance companies. Insurance companies have strong financial interests in propagating psychological models of #MECFS and now #LongCovid. 5/

As MECFS is not caused by psychological factors, the UK health authorities now conclude that it cannot be cured by cognitive behavioral therapy. Such therapy may nevertheless help people cope with how a debilitating disease impacts their life. This is an important nuance. 6/

Importantly, the UK authorities explicitly advice against treatments that have been described as "cultish"/pseudoscientific such as the "Lightning Process". The latter is patented and a group of people have made a lot of money with it, even though it lacks scientific backing. 7/

I know all this sounds pretty wild for someone unfamiliar with #MECFS. Unfortunately, it is true and has prevented governments from investing money in research on biomedical treatments. As a consequence, millions of people with #MECFS or #LongCovid lack treatment. 8/

For anyone interested in the specific #NICE guidelines, see nice.org.uk/guidance/ng206…