On 26th August 2020, the Petitions Committee of the Scottish Parliament closed the petition process and praised the petitioner for raising the issues affecting those with M.E. with parlaiment. The petition, having been previously considered by the committee at its meeting on 19 December 2019, when it took evidence from the Cabinet Secretary for Health and Sport and her officials, including the then chief medical officer, was closed without dissent on the basis of submissions from the Cabinet Secretary and the former chief medical officer that provided the further information that the committee requested during the evidence session.
To re-cap, Petition PEO1690 ‘Review treatment of people with ME in Scotland’ was introduced into the Scottish Parliament’s Petitions Committee on 31st May 2018 and supported by 5770 signatues (1274 off-line) and led to a high number of submissions, personal testemonies and responses from the Scottish Government and Health Boards. Its instigators were
Calling on the Scottish Parliament to urge the Scottish Government to review the level of support for people with Myalgic Encephalomyelitis (ME) in Scotland with a view to:
Investing in biomedical research and creating a centre of excellence for ME.
Ensuring healthcare professionals’ training and education materials reflect the latest scientific evidence.
Providing specialist care for patients and discontinuing the harmful treatments graded exercise therapy (GET) and cognitive behavioural therapy (CBT).
What did the Cabinet Secretary for Health and Sport’s submission on work underway answer the three main calls of the Petition?
The Cabinet Secretary began by outlining the challenges faced by NHS Scotland caused by the COVID-19 pandemic and the delay in the issue of the NICE guideline on ME/CFS diagnosis and treatment which will affect timelines to produce NHS Education Scotland small practice learning modules and updates to the Scottish Good Practice Statement (SGPS).
On training and education, the Cabinet Secretary confirmed that dialogue with Scottish medical schools would re-commence when the updated NICE guideline is published She did, however confirm that her department had received replies from medical schools advising how they currently incorporate learning about ME/CFS and stating they would welcome interaction with the third sector and lived experience to support this.
Given delays in NICE guideline revision, Ms Freeman confirmed having asked the Scottish Health Technologies Group (SHTG) to undertake a rapid review of GET for ME/CFS and post Covid-19 fatigue. The rapid review noted the validity, applicability and certainty of positive findings around the effectiveness and safety of GET are extensively debated. It advises caution in the use of GET for ME/CFS until the revised NICE guideline and a Cochrane systematic review are published. It also highlighted the recent NICE statement that advises the recommendations in the existing ME/CFS guidance about GET (published 2007) should not be assumed to apply to people with fatigue following Covid-19.
Her department is in the process of updating the SGPS to draw attention to the SHTG rapid review conclusion. Health Boards and GPs will be notified of this update.
There were no specifics in this statement regarding increased research spending nor the creation of a centre of excellence but both the Cabinet Secretary and the Petitions Committee noted that discussions were on-going and always open for a new Petition to be launched in the future.
An email to interested parties entitled ‘Scottish Government Update on ME/CFS’, on 13th October 2020 recapped and updated progress and narrating that
- commitments given involved setting out healthcare professionals’ training and education materials to reflect the latest scientific evidence in light of the forthcoming NICE review, and affirming that the Scottish Government has advised that people should not be pressed into accepting unwanted Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) treatments.
- the Scottish Health Technologies Group have undertaken a rapid review on GET for ME/CFS in July 2020. The rapid review concludes that care is taken on assuming the use of GET for ME/CFS until the NICE/ Cochrane updates are published. No published evidence on the use of GET for people experiencing persisting fatigue following Covid-19 was identified.
- the Scottish Good Practice Statement on ME/CFS has been updated to reflect the rapid review findings and officials have written to General Practitioners and are currently in the process of alerting all NHS Board Chief Executives of this update.
It would appear that much will depend on the terms of the NICE guideline review which will be published in draft in Nov 2020 and is due to come into force in April 2021.
On eduction, it was announced in October 2020 that as part of the programme being funded for the Neurological care and support: framework for action 2020 to 2025, a new ME/CFS learning resource would be made available – this to include a podcast by Dr Muirhead that complements a learning module and invites health professionals to find out more. The module is accredited by Study PRN/Lerna in partnership with the University of South Wales, and it is hoped that key learning centres in Scotland, including the Royal College of GPs Scotland, the Royal College of Nursing Scotland and NHS Education for Scotland will publicise this to its members.