Reactions to the NICE Scandal

A collection of tweets, charity statements, news articles and comments from the psychosomatic lobby after NICE paused the new guideline for ME/CFS just hours before planned publication 18 August 2021.

17 August 2021

The day started with great news

The Times – Disputed therapies for myalgic encephalomyelitis abandoned

“The Times has learnt that new guidelines from the National Institute for Health and Care Excellence (Nice) will say graded exercise therapy (Get) should no longer be offered to people with ME. Cognitive behavioural therapy (CBT), a talking therapy previously seen as having a curative role, should only be offered to support patients in dealing with the anxiety of being ill.”

The day ended in despair

NICE pauses publication of updated guideline on diagnosis and management of ME/CFS

“NICE has today (17 August 2021) taken the decision to pause publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS). (…)

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.”

Tweets & Reactions

Hundreds of more comments below NICE’ Tweet:


Statement from M.E. charities

On Behalf of: Forward ME, Action for ME, ME Association, Doctors for ME, ME Research UK.

“No minority party should be able to undermine the careful scientific consensus established by the NICE committee and the rigorous work that has been undertaken in good faith.”

Statement from Invest in ME

“This is gross incompetence by NICE and probably background manipulation from others. It deserves a full scale inquiry into the role of NICE and those who are really controlling the agenda with regard to this disease.”

Statement from Doctors with ME

“NICE does not have the power in law to accommodate unlawfulness, malpractice nor industrialised scientific illiteracy. Nor does it have the power to accommodate vested interests over clinical needs or lawful requirements”

Statement from 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.” (Press Release)

News Articles

British Medical Journal

Rapid Responses to the article

The Guardian

Industry News

BBC News

The Telegraph

The psychosomatic lobby

The Royal College of Paediatrics and Child Health (SMC)

“We are very pleased that this process has been paused and we look forward to working with NICE to ensure that future guidance is of benefit to children, young people and those who manage their care.”

Prof Trudie Chalder (SMC)

“NICE making the decision to pause the release of the guidelines for chronic fatigue syndrome was the right thing to do.  The messages were confused and clinicians would not have had clarity on evidence based best practice.”

Dr Alastair Miller (SMC)

“The draft guidelines were predicted to stop the use of GET and limit the use of CBT which have served most CFS/ME clinicians and patients well for many years and were endorsed by the NICE guidelines in 2007. Most NHS clinicians use GET and CBT and have done so for a long time.”

Andrew Goddard, president of the Royal College of Physicians (BBC)

“We were extremely concerned that the final guidelines proposed by NICE may not have taken into consideration the extensive comments we made to the draft version, particularly in relation to treatments we know to have significantly benefited many patients.”

Please sign the petition

Don’t let vested interests perpetuate harmful treatments for ME/CFS!

“The timing of the resignations and the article is not coincidence. It is an attempt  to discredit NICE’s work on ideological grounds. It would be a bitter blow if ME/CFS sufferers, gas-lighted for decades, should be robbed of justice at the last moment. The revised guidelines are due for release later this month – support our cause and vote to make sure they go ahead!”

We stand with you and will never give up!

Sissel Sunde, Norway ❤
MillionsMissing Stavanger


3 thoughts on “Reactions to the NICE Scandal

  1. We will not accept this.
    ME us the most terrible illness, and the incompetance of the healthdepartment and doctors, and lack of money for research makes it so much worse.
    I used to be a nurse, and I have never seen patients treated so badly as we are with ME.

    Liked by 2 people

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