Back in August, those who suffer from the severely debilitating disease myalgic encephalomyelitis (ME) were waiting expectantly for the release of the much-delayed guideline on ME/Chronic Fatigue Syndrome (CFS) by the National Institute for Health and Care Excellence (NICE).
It was due to be released on 18th August, but the day before, NICE announced a “pause” in publication for an unspecified period.
“Publish the NICE ME/CFS guideline now”
#MEAction UK immediately condemned the delay and nearly 22,000 people have now signed a petition saying, “Publish the NICE ME/CFS guideline now”.
Sian Leary, for #MEAction UK, said,
“NICE’s action is devastating to thousands of people with ME who have been seriously harmed by graded exercise therapy – in some cases leaving them housebound or even tube-fed.
“It is vital that we ensure NICE’s scientific process is not undermined by a few powerful voices. People with ME took part in developing this guideline in good faith, and NICE must now heed our call and publish it.
“We are concerned that people arriving at clinics are still being given graded exercise therapy and harmed by it. If the guideline had been published on schedule these new harms could have been prevented. Every day of delay puts more people at risk.”
Cause of the pause
Following a draft of the guideline in November 2020 there was a strong expectation that the guideline would say that graded exercise therapy (GET) should not be used as a treatment for people with ME, recognising the harm this approach has caused.
The pause in publication appeared to be caused by the threatened refusal of at least two medical Royal Colleges and NHS England to implement the guideline due to the removal of the recommendation for graded exercise therapy.
Recommendation for graded exercise therapy had been included in the 2007 NICE guideline on ME/CFS. NICE said about the current delay, “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.”
Independent Committee signed of guideline
After three years’ work and over a million pounds of public money spent, the NICE guideline had already been signed off before 17th August by an independent committee made up of medical professionals and lay members with ME.
The recommendations in the new guideline were agreed following a thorough review of the evidence and assessment of the research according to NICE’s strict methodologies.
Morten: Undue interference
Dr Karl Morten, of Nuffield Department of Women’s and Reproductive Health, University of Oxford, commented:
“NICE decided to pause publication due to undue interference from groups representing medical bodies with a vested interest in maintaining delivery of treatments that have for quite some time been shown to lack evidence supporting their use.
“NICE is highly regarded internationally for “producing evidence based guidelines” 1 and as such it is imperative that NICE would continue to follow its own mission statement or risk losing its credibility.”
Hughes: “A grubby attempt to preserve a professional status quo”
Professor Brian Hughes, Professor of Psychology at the National University of Ireland, Galway commented,
“The premise of organisations such as NICE is that independent regulation and review are sacrosanct. In my view, this effort by a small number of clinical organisations to interfere with that independence undermines the entire concept of regulation.
“The idea that providers of clinical treatments would seek to overrule their regulators needs to be seen as the protectionism it is. It is not a scientific debate, but a grubby attempt to preserve a professional status quo. It cannot be accommodated in any way. Medical treatment needs to be guided by research and to change when the evidence changes.
“Frontline clinicians throughout the UK are committed to evidence-based medicine. They recognise the importance of NICE and the value of the new ME/CFS guideline. It is frankly embarrassing to see a small number of influential clinicians attempting to subvert this process, a process designed to protect patients from harm and to ensure they receive the best available treatments.
“I am confident that NICE will continue to promote the highest standards of clinical excellence by publishing and defending its new ME/CFS guideline.”
Petition handed over
Jennifer Howells, Director of Finance, Strategy and Transformation at NICE, accepted MEAction UK’s petition on Tuesday 12th October, preceding NICE’s roundtable meeting on the 18th October.
Across the world many health professionals and organisations are now working with patients to treat ME by managing symptoms to improve quality of life, while recognising there is no treatment or cure. The new guideline by NICE would bring the UK into line with other large organisations such as the US Centres for Disease Control.
Patients have been waiting for 14 years. Over 21,000 people are urging NICE and the medical Royal Colleges to restore their reputations by publishing and using the ME/CFS guideline now so as not to harm more people with ME.
News shared by Adriane Tillman on behalf of ME Action. Ed
