• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Dr David Tuller: More CBT Research from Sir Simon and Professor Chalder


Senior Member

Trial By Error: More CBT Research from Sir Simon and Professor Chalder

12 AUGUST 2020

By David Tuller, DrPH

In 2011, Professor Trudie Chalder declared at a press conference for the high-profile PACE trial that twice as many chronic fatigue syndrome patients who received cognitive behavior therapy and graded exercise therapy got “back to normal” compared to those in the two comparison arms. Although the statement was a dramatic misrepresentation of the findings just reported in The Lancet, Professor Chalder’s comments received international media attention and helped her and and her co-investigators position the trial as a success.

Her longtime colleague at King’s College London, Professor Sir Simon Wessely, has made comparably questionable assertions. For one, he called the PACE trial “a thing of beauty”—even though it violated core principles of scientific inquiry. Despite Sir Simon’s bountiful appreciation of PACE’s aesthetic qualities, much of the international scientific community has rejected the study’s findings.
Last edited by a moderator:


Senior Member
There are only two things I take exception to, the article happily rips apart the issues with the original study no qualms there, but my concerns are both based on optimism that NICE intends to adjust its guidance:

After the pandemic hit, NICE issued a statement that GET should not be presumed to be a treatment for post-Covid fatigue based on the 2007 guidelines.

Since then, however, the NHS has published at least 5 articles I have seen, both as patient advice and in medical journals, all recommending a form of gradual increase in exercise. This includes one from the BMJ just a couple of days ago. It also included face to face CBT as well alongside specific post-acute Covid concerns for lung and other organ damage. If they are intending to change this recommendation it hasn't filtered through into recommendations this year in relation to Covid-19 for patients. The NHS and press have been calling them long hauliers and now in the BMJ article I saw the term "post-acute Covid", they never call them probably ME/CFS patients although one newspaper has made the link but none of the others have. They call it "ME like" if it's mentioned at all.

So not only is the recommendation still the same as it always was, GET + CBT, but they are also separating Covid-19 ME/CFS patients as a group from the rest by giving them a different name. Looks like a divide and conquer strategy to me so that those Covid patients don't do their research and realise what the NHS is doing to them will make them worse and refuse "treatment".

Addressing CBT is likely to be trickier for the NICE panel, for multiple reasons. CBT has been an established therapeutic intervention for decades. It is routinely offered to people with major illnesses like cancer and multiple sclerosis who are also experiencing depression or have other mental health needs, so some find it hard to understand why ME/CFS patients would object to the recommendation.

The problem with CBT in the form I received it is rather than just trying to focus on making thought more conscious the NHS also includes doing activities. One such example was going out for a coffee with a friend, which was given to 7 bed/housebound CFS patients. Then the next session followed that up by describing pacing as a gradual increase in activity. "It's proven to work" they say as they show that just making the increase in activity more gradual will result in no busts. That would be relying on PACE then, the ridiculed and thoroughly disgraced paper.

I think CBT as the NHS teaches it has a problem. They use GET in the middle of it. I don't know if they all make this mistake across all services or if it's just the two times I have been on it. I think it's obvious you can't utilise doing normal things when people can't do normal things due to disability, that isn't helping them it will instead either make them feel worse, unheard or they trust you and then crash and disappear off your CBT course leaving a survivor bias. Most importantly what it does is show the NHS believes that CBT cures something rather than helps people cope. So the CBT end I have issues with too.