We call on the National Institute for Health and Care Excellence (NICE) to publish the finalised ME/CFS guideline in its current form.
On 18th August 2021, NICE were due to publish their newly developed ME/CFS guideline. It would have transformed the care people with ME receive in the UK and abroad.
But with less than 24 hours to go, NICE pulled out of publishing it under pressure from those with vested interests.
Individuals with ME, and our allies, deserve a voice in this process.
NICE must reverse this decision, and take the courageous and ethical step to publish this guideline in its current form.
The power and beliefs of a few must not stand in the way of evidence.
Read our Demands
We call on the National Institute for Health and Care Excellence (NICE) to publish the finalised ME/CFS guideline in its current form.
People with ME are depending on the finalised guideline to transform the care they receive: ensuring accurate diagnosis, appropriate symptom management, and access to the best support available.
However certain medical Royal Colleges have informed NICE they will refuse to implement these improved guidelines. They demand that graded exercise therapy is included as a recommended treatment. Yet evidence demonstrates this harms most people with ME, and all evidence supporting use of this therapy was deemed to be of low or very low quality by the independent NICE guideline committee.
With less than one day to go, NICE capitulated to these vested interests and delayed publication.
This three year, multi-million pound, pre-defined process has assessed all available evidence in depth, and given ample opportunity for the Royal Colleges to respond to consultations. NICE confirms it “has used its usual rigorous methodology and process in developing this guideline.”
The power and beliefs of a few must not stand in the way of evidence.
We urge NICE to take the courageous and ethical step of publishing the finalised ME/CFS guideline immediately, and call on the Royal Colleges to work collaboratively with patient organisations to implement it.
3 thoughts on “Sign Our Petition: Publish the NICE ME/CFS Guideline Now.”
Thank you for this much needed petition. We need new NICE Guidelines and we need them now, and especially to end GET.
Within months of first developing sudden onset ME/CFS with PEM around six years ago, I began reading articles claiming I could improve my overall condition and resume the more active lifestyle I enjoyed pre ME/CFS if I pursued GET. I found the concept of GET intuitively appealing, as it reminded me of the normal gradual conditioning I historically undertook in order to improve my fitness to prepare for a new sport or increase physical activity. I sincerely wanted it to work, both because I enjoy physical activity and wish to be more active. I have attempted GET multiple times under the guidance of physical therapists. Regrettably, each time I found my ME/CFS symptoms “flaring”, making it difficult to work or do normal family activities. My personal experience is GET represents mere wishful thinking for persons having ME/CFS with PEM, and it is misleading, unwise and potentially harmful to advocate or promote it as helpful.
It makes me very sad that this petition is even necessary. I am stunned that some Royal colleges can derail this entire process. NICE – please do the right thing and publish the guidelines. The flaws in the PACE trial have been clearly and comprehensively laid bare. Many ME/CFS sufferers have testified that GET or pushing beyond our limits makes us worse but often we are treated as fit to be ignored. What we really to focus on is getting:
1. properly funded bio-medical research
2. diagnostic tests
3. effective treatment.
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