Patient advocate Sally Callow, explores the implications of the delay of the revised NICE guidelines being published in relation to treating patients living with ME/CFS 

On the 20 September 2021, members of the ME/CFS patient community and allies protested outside of the National Institute of Health and Care Excellence in Stratford, London and many hundreds more took part in a virtual protest against NICE’s ‘unprecedented’ delay of the publication of the ME/CFS guidelines.

Central to this ongoing issue is a research study called the PACE trial. This research study has been referred to as “one of the biggest medical scandals of the 21st century”. Part funded by the DWP and health insurance companies looking to reduce the welfare bill and insurance payouts, and it has been debunked as flawed research by scientists around the world, yet its outcomes and recommended treatments for ME/CFS remain within NICE guidelines today. The ME/CFS patient community, including patients, advocates, charities, researchers and scientists have been campaigning for well over a decade against this research study that recommended graded exercise therapy (GET) and cognitive behavioural therapy (CBT) as treatments for ME/CFS patients. Although NICE is based in the UK, their guidelines have a ripple effect worldwide.

NICE has spent well over three years reviewing all scientific data available to update their guidelines and determine the best treatments for ME/CFS. In their draft guidelines published in November 2020, NICE said no treatments based on exercise were to be recommended to ME/CFS patients and CBT should not be recommended as a treatment. Between the draft and final guidelines publication date there was a period of consultation. The final guidelines were due to be published on 18 August 2021. However, nine hours before they were due to be published NICE ‘paused’ publication. An excerpt from the announcement stated:

“We want to thank everyone who has contributed to this guideline and particularly the committee and the patient groups who have worked so diligently. However, unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need.

“In order to have the desired impact, the recommendations must be supported by those who will implement them and NICE will now explore if this support can be achieved.”

By delaying the publication, NICE has breached their own regulations and protocols. After reviewing scientific evidence for over three years, NICE has allowed the process to be halted by a few Royal Colleges who have vested interests in this issue. 

As Ron Davis, Director of the Stanford Genome Technology Centre and Professor of Biochemistry and Genetics, Stanford University stated:

“NICE has abruptly paused the publication of its new guidelines for ME/CFS, arguing that those who are treating patients need to agree with the guidelines. This is a false argument. Medical advice must follow the evidence and not personal beliefs or political positions. If doctors treating ME/CFS patients do not agree with evidence-based guidelines, they should not be treating these patients. This is why we have guidelines.”

Patients, myself included, are angry that the opinions of a few eminent medical professionals have been put ahead of scientific evidence. Worryingly, not only have the new guidelines been halted but the 2007 outdated and harmful guidelines have not been withdrawn. This means that any patients newly diagnosed with ME/CFS or long COVID (similarities mean the same treatments are being recommended) will be advised to take part in graded exercise therapy and cognitive behavioural therapy in ME/CFS and long COVID clinics.

For those readers who are unfamiliar with the disease, ME/CFS bodies do not create or use energy effectively and any kind of increased activity (physical, cognitive or emotional) negatively impacts our symptoms and causes post-exertion malaise (PEM) – the key defining characteristic of ME/CFS (now also shared with a subset of long COVID). PEM can cause a deterioration immediately after exertion and 24-72 hours later. Overexertion can also cause patients to deteriorate significantly to become confined to their house or bed for months or years on end.

The NICE guidelines delay is the latest example of poor decision-making and governance where our disease is concerned. ME/CFS is not simply a health issue, the surrounding political issues make it a human rights abuse issue too. There is a scientific consensus as to what ME/CFS is and yet the UK medical establishments do not adhere to it. I, and many others, believe that by not doing so they are behaving unlawfully.

Finally, few were able to attend the in-person protest outside NICE HQ because of ME/CFS patients’ very limited energy. Even those protesting virtually will have experienced PEM, such is the cruel nature of the disease. Unfortunately, many thousands are too sick and deficient of energy to even protest on social media from their beds. Yet, some medical professionals wrongly and dangerously believe increasing our activity and exercising is the way to make us ‘better’.

You can follow Sally on Twitter @MEFoggyDog.

Image by Free-Photos from Pixabay 

Article originally appeared in the Oct/Nov issue of PosAbility

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