Scottish Government Issue Caution Notice for Graded Exercise Therapy in ME/CFS & Post/Long-Covid

Ewan Dale, Trustee, ME Association

The Scottish Health Department has posted an interim statement advising caution over the suitability of Graded Exercise Therapy (GET) in treating ME/CFS and has reiterated the earlier statement from NICE cautioning against use of GET in Post/Long-Covid.

Jean Freeman Scottish Cabinet Secretary for Health and Sport

Following a review of the evidence behind existing recommendations of GET as a suitable therapeutic treatment for ME/CFS, Health Improvement Scotland’s Health Technologies Group produced a rapid response in August reporting the conflicting reports of effectiveness for GET.

This has now been released in tandem with an update to the webpage for the Scottish Good Practice Statement on ME/CFS.

The news was conveyed in an email from Clinical Priorities (see extract below). The ME Association is a stakeholder in the process of NHS improvements for people with ME/CFS in Scotland.

Extract from email received 13 October 2020

I am writing to you on behalf of the Neurological Conditions, Chronic Pain and Long-Term Conditions Policy Team to inform you of recent updates with work that relates to ME/CFS.

On the 26 August 2020, the Public Petitions Committee (PPC) closed the petition on ME/CFS in recognition of the progress and commitments given by the Cabinet Secretary.

This commitment involved setting out healthcare professionals’ training and education materials to reflect the latest scientific evidence in light of the forthcoming NICE review, and the Scottish Government has advised that people should not be pressed into accepting unwanted Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) treatments.

Clinical Priorities Policy Manager – Neurological Conditions, Chronic Pain and Long-term conditions – Planning and Quality Division

The Main Changes

Health Improvement Scotland (HIS) Rapid Response Evidence Conclusions

04 August 2020

“The validity, applicability and certainty of positive findings around the effectiveness and safety of graded exercise therapy (GET) for symptom management in people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) are extensively debated.

“Patient experience surveys indicate that over half of respondents find the intervention ineffective or detrimental.

“A Cochrane systematic review and a NICE Guideline are currently being revised and updated and caution should be noted on the use of GET for CFS/ME until the updates are published.

“No published evidence on the use of GET for people experiencing persisting fatigue following COVID-19 was identified. NICE has made a statement cautioning against assuming CFS/ME recommendations apply to this patient group.”

NHS Scotland: The Scottish Good Practice Statement on ME/CFS

Scottish Good Practice Statement on ME/CFS: Adults Clinical Guide (2010)

“The Scottish Good Practice Statement on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME-CFS) was published in November 2010.

“Scottish Ministers have given a commitment to review the content of this Statement when the National Institute for Health and Care Excellence (NICE) publishes its revised guideline on this condition  in 2021.

“Please also note that in August 2020 the Scottish Health Technologies Group (SHTG) published a rapid review into the use of Graded Exercise Therapy (GET) as a treatment for people with ME-CFS. This concluded that:

  • In light of a Cochrane systematic review and the NICE guideline revision, caution should be noted on the use of GET for ME/CFS until the updates are published, and,
  • No published evidence on the use of GET for people experiencing persisting fatigue following Covid-19 was identified. NICE has made a statement cautioning against assumption that ME/CFS recommendations apply to people with fatigue following Covid-19.”

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