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.