By David Tuller, DrPH
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 In addition to replacing the name CFS/ME with ME/CFS, the new guidelines have rescinded approval of graded exercise therapy (GET) and cognitive behavior therapy (CBT) as treatments for the illness.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?
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