By David Tuller, DrPH
UPDATE, August 16, 2022: Last week, Charles Shepherd, medical advisor of the ME Association, received a response to his inquiry about the King’s College London website from an administrator at the relevant unit. Here’s the note:
Please find below response from our Team:
Thank you very much for taking the time to search our websites for us highlighting these issues. The service website was updated as soon as the NICE guidelines were finalised (https://slam.nhs.uk/service-detail/service/persistent-physical-symptoms-research-and-treatment-unit-278).
The webpages you found were not routinely updated or had been archived. So, we have now updated one (https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1) and the other archived web page will be removed in due course by administrators within KCL.
With kind regards
Persistent Physical Symptoms Service
formerly Chronic Fatigue Unit
First Floor Mapother House
De Crespigny Park
London SE5 8AZ
Unfortunately, the updated site still includes this problematic sentence: “Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME.” The site notes that the director of the persistent physical symptoms unit is Professor Trudie Chalder, so incompetence and misstatements should not be too surprising.
I have written a few posts about how various health entities have so far not changed the information about ME/CFS on their websites or acknowledged the revised recommendations published by the UK’s National Institute for Health and Care Excellence (NICE) last October. In addition to replacing the name CFS/ME with ME/CFS, the new guidelines have rescinded approval of graded exercise therapy (GET) and cognitive behavior therapy (CBT) as treatments for the illness. (The guidelines leave room for CBT as supportive care rather than a curative intervention.)
The ME Association’s medical advisor, Dr Charles Shepherd, has written to a number of regional National Health Service trusts to express concern about the matter, with varied results. Recently, he sent another letter–this time to King’s College London. With Professor Sir Simon Wesseley and Professor Trudie Chalder leading the posse, KCL is home base, or one of the home bases, for the GET/CBT ideological brigades. (I mean, what else is a professor of CBT like Professor Chalder going to offer anyone?)
At some point–I don’t know exactly when–KCL’s CFS/ME service has rebranded itself as being devoted to addressing “persistent physical symptoms” (PPS), another term for so-called “medically unexplained symptoms” (MUS). But it still highlights the importance of reversing the purported deconditioning that purportedly is a cause of what it continues to call CFS/ME. The KCL site does not, apparently, reference the new NICE guidelines or inform patients that its approach to treatment has been officially discredited.
Below is the letter sent by Dr Shepherd. Who knows what kind of response, if any, he’ll receive?
Dear PPS referrals
Re: ME/CFS referral service, Information on the management of ME/C
I am writing in my capacity as medical adviser to the ME Association regarding implementation of the new (October 2021) NICE guideline on ME/CFS.
Firstly, we fully appreciate the fact that health professionals in the specialist referral services for people with ME/CFS have had a very challenging time during the pandemic.
Consequently, we know that it has been difficult at times to provide an up to date and comprehensive assessment and management service.
However, it is very disappointing to find that nine months after publication of the new NICE guideline on ME/CFS there is still no mention or reference to the recommendations in this new guideline in the website information you are providing for health professionals and for people with ME/CFS.
Of particular concern is the fact that graded exercise therapy (GET) is still being recommended on the basis that ME/CFS is perpetuated by deconditioning:
Our routine treatment is cognitive behaviour therapy (CBT), which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME.
We also provide Graded Exercise Therapy (GET) and are also now seeing patients with fatigue in relation to chronic diseases.
…plan regular, predictable, consistent activity to combat deconditioning, …
The NICE guideline committee reviewed all the evidence from relevant clinical trials of treatments for ME/CFS, including those for CBT and GET, and concluded that the evidence for efficacy for both CBT and GET was either low or very low.
in addition, the committee reviewed patient evidence which consistently reported that over half of people with ME/CFS had suffered harm as a result of GET.
Consequently, it was decided to no longer recommend that GET should be offered to people with ME/CFS – as was recommended in the 2007 NICE guideline.
In addition, CBT should no longer be regarded as a primary treatment for ME/CFS on the basis that it is perpetuated by abnormal beliefs and behaviours.
Regarding GET and the deconditioning model of symptom perpetuation, the new NICE guideline clearly states:
1.1.14 Do not offer people with ME/CFS:
- any therapy based on physical activity or exercise as a cure for ME/CFS
- generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
- any programme that does not follow the approach in recommendation 1.11.13 or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (see box 4)
- physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.
NICE guideline: https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#managing-mecfs
As GET appears to be still being offered as a key part of the treatment programme for ME/CFS at Kings College Hospital, could I also check that people are being informed that this treatment is not recommended by NICE?
Finally, can I point out that the new NICE guideline recommends that a diagnosis of ME/CFS should be made at 3 months from the onset of symptoms and not 6 months as in your referral protocol.
And that the choice of 4 out of 8 diagnostic symptoms is not consistent with the four key symptoms (ie debilitating fatigue, post-exertional malaise, unrefreshing sleep and cognitive dysfunction) that are identified and recommended by NICE as being diagnostic for ME/CFS.
GENERAL PRACTITIONER GUIDELINES
Diagnosis: Clinically evaluated, unexplained, persistent or relapsing chronic fatigue of new or definite onset, not the result of ongoing exertion; not substantially relieved by rest and results in substantial reduction in previous levels of occupational, educational, social, or personal activities plus the concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue:
substantial impairment in short-term memory or concentration
tender lymph nodes
headaches of a new type, pattern or severity
post-exertional malaise lasting more than twenty four hours
multi-joint pain without joint swelling or redness.
I would be grateful if you could let me know what action you will be taking in regard to updating your website information on ME/CFS in order to to bring it into line with the new NICE guideline and whether you will be continuing to offer GET to people with ME/CFS.
In order to make this information patient friendly we would be very happy to offer any assistance that may be required.
Dr Charles Shepherd
Hon Medical Adviser ME Association
Member of the NICE guideline committee from 2019 – 2021
NB: As implementation of the new NICE guideline is of great interest to our members, this letter will be placed on our website. We will also publish your reply.
Dr Nina Muirhead – Co-Chair, DHSC Group on ME/CFS Medical Education and Training
Carol Monaghan MP – Chair, APPG on ME
Dr Peter Barry – Chair, NICE guideline committee on ME/CFS
Baroness Ilora Finlay – Co-Chair NICE guideline committee on ME/CFS
11 thoughts on “Trial By Error: King’s College London Still Promoting Discredited CBT/GET/Deconditioning Paradigm (Update)”
Science is continually evolving but I guess there’ll always be some who refuse to embrace the changes because they have firm-held beliefs that they just can’t let go of. Is there any therapy that could help them with that?
GET and CBT are about as useful as medieval blood-letting.
Well done to @MEAssociation, Dr Shepherd and David Tuller.
Yes, I’m a former patient of the KCL MUS ‘treatment’ regime. Yes I wanted to complain. My GP advised against it – “You’re too sick to cope with what they’ll throw at you. The risk to you is too great.”
And it looks like the UK economy may be suffering as a result of many people now being economically inactive because of chronic sickness – see https://www.bbc.co.uk/news/business-62471260 and https://www.bankofengland.co.uk/speech/2022/may/michael-saunders-speech-at-the-resolution-foundation-event. Could the plan to cut healthcare costs by diverting sick patients with unexplained symptoms to CBT and GET be backfiring? From what I’ve seen, I reckon it could.
Given that what they promote causes actual harm, why have these people not been at least barred from working with people with ME? Or better still had their right to practice as doctors removed? If it were a drug that caused so much damage it would have been withdrawn.
Having cared for my severely affected daughter for 22 years and seeing the same gaslighting of Long Covid, I’m now very, very angry!
It looks like the UK economy may be suffering as a result of many people now being economically inactive because of chronic sickness – see -https://www.bbc.co.uk/news/business-62471260 and -https://www.bankofengland.co.uk/speech/2022/may/michael-saunders-speech-at-the-resolution-foundation-event. Could the strategy to divert sick patients with unexplained symptoms to CBT and GET be backfiring? (I reckon it could.)
Kings, the leader of the biopsychosocial approach will be reluctant to say their work was poor and harmful.
Sad it seems the first time The ME association has tried to address their website and CFS service.
Kings have archived the abysmal former website 2006-2021 – available here About the Unit :Chronic fatigue syndrome :King’s College London
https://web.archive.org/web/20110811080536/http://www.kcl.ac.uk/projects/cfs. It was many pages long and afaics didn’t acknowledge or address severe ME at All, a failing that could have been tackled years ago.
The website today still highlights the connection of the unit to NIHR, as before.
Did Charles CC in Carol Monaghan SNP MP who leads the APPG on M.E?
It is staggering that they are getting away with doing this within the NHS. Which is why I suggest contacting Carol – the highest level needs to step in here and stop harm to patients.
They can call the service whatever they like but the cannot cause medical harm by ignoring treatment guidelines.
These Psychs are like loose canons, working unrestrained in a system that is meant to work to the highest medical standards.
It’s got to stop.
David, I think power, reputation and money will prevent any changes. Long covid is a whole new magic money tree for GET/CBT with no one to stop them
Thank you so much for taking this action. I really hope it will result in change, and a move towards respecting patients and actually taking their knowledge of their own bodies and illness seriously.
In my experience as a person with Long Covid, clinics here in the UK are continuing to offer variations on GET and particularly CBT. In fact they tell me there are no evidence based alternatives. Is that the case? What would you recommend as an evidence based approach to the treatment of various forms of chronic fatigue other than compensatory management (eg energy conservation) which while beneficial as a coping approach seems to carry no hope of recovery or rehabilitation (because I do want to improve functionally)?
My article discusses their strategies, like name changing to hide the fact they are claiming everything is psychosomatic.
As a psychotherapist dedicated to understanding the origins of psychological problems, which can mostly be understood as the result of harmful events in the course of life, I find it stunning that in consequence of noticing that people with ME generally have had happy and successful lives, in which hard physical exertion is usually a feature, they have said that this proves you can get a psychological set of symptoms without any life narrative that could explain it. Psychiatrically Unexplained Symptoms.
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