Fury as NICE cancels publication of finalised ME/CFS guideline

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There is widespread anger in the ME community today as NICE announced that it will not be publishing their finalised guideline on ME/CFS after pressure from sections of the medical establishment.

At #MEAction UK, we are furious that NICE have capitulated to vested interests of those who support graded exercise therapy instead of defending their own procedures.

This step leaves people with ME at risk of additional harm in the coming weeks and months. NICE gives no suggestion of a timeframe for what will now happen, instead implying professional organisations have refused to implement the guideline.

Read our press release below.

Press Release

For immediate release

Anger as, with one day to go, NICE cancels publication of ME/CFS guideline

#MEAction UK are furious that NICE have announced today they are delaying the publication of the new ME/CFS guideline that could do so much good. 

After a 3 year process to develop a new guideline on ME/CFS, the National Institute for Health and Care Excellence (NICE) have reneged on their commitment to improve care for people with ME.

One day before the new ME/CFS guideline is due to be published, NICE have announced that they are “pausing” publication.

Sian Leary, spokesperson for #MEAction UK, tell us: “At a time when NICE needs to show strength, and to back their own independent processes, they have instead shown a depressing level of weakness. They are capitulating to the vested interests of those who support graded exercise therapy, instead of standing up for the thousands of people being harmed.”

For the past 14 years, NICE has recommended graded exercise therapy to people with ME/CFS. Throughout this time, people with ME have consistently reported they deteriorate following this approach. The draft guideline, published in November 2020, looked at all of the evidence for this approach in depth. Every study was deemed to be of low or very low quality. They found significant evidence demonstrating that people with ME were being harmed by graded exercise therapy, and therefore recommended against this therapy. 

Every patient organisation in the UK supported this change, with many professional bodies also relieved to see a harmful recommendation finally removed. 

The draft guideline included many positive recommendations on the care people with ME/CFS should receive, including dedicated recommendations for those with severe ME and for children and young people. 

The delay in publication is causing shockwaves throughout the ME/CFS community, who were finally hoping for positive change. 

Sian Leary urges NICE to reconsider, saying: “We are shocked to hear that the actions of the medical establishment have led to the delay and we urge NICE to reconsider the decision and publish the guideline as scheduled.”

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2 thoughts on “Fury as NICE cancels publication of finalised ME/CFS guideline”

  1. I am shocked and appalled at this change of plan by NICE and the misrepresentation of the NICE guidelines by the medical spokesperson who was on radio 4 this morning

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