Trial By Error: Some National Health Service Branches Fail to Respond to New NICE Guidelines for ME/CFS

By David Tuller, DrPH

In late October, the UK’s National institute for Health and Care Excellence (NICE) released its new ME/CFS guideline, which specifically recommend against graded exercise therapy (GET) and a specialized form of cognitive behavior therapy (CBT). Last week, I wrote about how King’s College London continues to host a page on “CBT and chronic fatigue syndrome, which boasted that “our researchers were among the architects of bespoke talking therapy for chronic fatigue syndrome, which is now one of two treatments recommended in the UK. (This page is still live as of this writing.)

It seems some branches of the National Health Service around England have been similarly slow to react to the news. it is not clear how widespread this problem is, but someone should check out the sites of all the NHS trusts to assess if they have kept up with the changes.

As of today the North & East Formulary and Referral page for its “Chronic Fatigue/ME Service” includes this sentence: “Our service is commissioned to provide the treatment strategies outlined in the NICE guideline for this condition. The link from the sentence goes to the now-inoperative 2007 NICE guideline, which recommended both GET and CBT as the treatments of choice. The page does not appear to indicate when it was last updated.

The website for the Barking, Havering and Redbridge University Hospitals NHS Trust declares this: “Our approach is based on principles of Cognitive Behavioural Therapy and Graded Activity/Exercise Therapy. (Again, it is unclear when this page was updated)

And here’s the current language describing the Newcastle Hospital NHS Trust‘s “Chronic Fatigue Syndrome/ME therapy psychology service on a page indicating that it was last updated on October 29, 2020, just before publication of the draft NICE guideline last November:

“Our team provides individualised care for patients to:

  • Sustain or gradually extend their physical, emotional and mental capacity
  • Manage the physical and emotional impact of symptoms and loss of physical capacity.

We offer Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) to people with CFS/ME, mindfulness, relaxation and acceptance therapy.

Some sites have apparently made recent note of the change on their websites, although whether practice has also shifted remains unknown. The Oxfordshire University Hospitals NHS Trust website, for example, indicates that “our treatment approach is informed by current guidelines including the NICE guidelines for ME/CFS and BACME [British Association for CFS/ME] ME/CFS Guide to Therapy.

The sentence links to the new NICE document and one produced by BACME a year ago that incorporated some similar changes. The page seems to have been updated on November 15th, one day ago.* [Correction: I originally wrote “two days ago,” even though this was posted on Nov 16th.] However, the page still includes the following text under the heading of “Cognitive Behavioural Therapy:

“CBT is an individualised therapy approach which aims to support you to work towards changes that feel meaningful for you.

It recognises that the way we think about things (thoughts), feel about things (feelings) and what we do (behaviour) are related to each other and how we feel physically.

Understanding this can help you to create helpful patterns and responses which in turn support improvements in your day-to-day life.

Our CBT sessions often involve themes such as optimising activity levels, understanding more about factors that can impact on CFS/ME, and managing the changes involved with having CFS/ME.

As well as using traditional CBT approaches, we often also draw from other modern CBT based approaches including Acceptance and Commitment Therapy (ACT), Compassion Focused Therapy (CFT) and mindfulness.

The new NICE guideline allows for CBT as supportive care as long as it is not presented as a means of recovery and/or based on the notions that patients are deconditioned and harboring “unhelpful beliefs about having an organic illness. While the new Oxford phrasing does not mention “cure or “recovery, it provides little evidence that clinicians have actually alleviated themselves of their own “unhelpful beliefs about the condition.

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