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NICE guideline is robust and globally supported

On 11th July, a new article was published in the Journal of Neurology, Neurosurgery and Psychiatry purporting to demonstrate flaws in the NICE ME/CFS guideline review process.

The World ME Alliance strongly rebuts these suggestions.

Our 24 member organisations are coordinating a global response to this study to demonstrate, on record, the unity of the ME community.

The study has been reported on in various media outlets, initially the Guardian. As a first step, Sonya Chowdhury, CEO of Action for M.E. and Co-Chair of the World ME Alliance, has sent a letter to the editor of the Guardian outlining our support for the NICE ME/CFS guideline. We also note that the arguments presented by these researchers have repeatedly found to be lacking, and the clear conflicts of interest that are not being reported in the press.

Dear Editor,   

We were disappointed by the absence of quotes or input from individuals with ME in your recent article titled “ME/CFS guidance that discourages exercise is flawed, say researchers.” As advocates for the broader disability community, we firmly uphold the principle of “nothing about us without us.” 

The NICE guideline review process included input from thousands of individuals, organisations, researchers and clinicians. The researchers whose views were presented in your article were granted additional space through an extraordinary roundtable, which consequently delayed the publication of the guideline. It is essential to acknowledge that their arguments have been thoroughly examined and repeatedly found to be lacking.  

Moreover, it is crucial for readers to be aware that previous studies conducted by these researchers were rated as low or very low quality by Nice. This information adds an important context to their perspectives.  

The World ME Alliance—a collaborative effort encompassing 24 national and international ME organisations across 17 countries—stands by NICE in their rebuttal of this paper.   

The patient community is ready to move on, and is eager to see resources, funding and energy put towards research projects such as DecodeME and the You&ME Registry. These initiatives have been developed with extensive patient and public involvement and offer genuine hope to individuals living with this devastating disease.   

Yours sincerely,  

Sonya Chowdhury CEO Action for M.E. and Co-Chair World ME Alliance,  

on behalf of the World ME Alliance and its 24 member organisations.  

This Post Has 3 Comments

  1. Anna

    Totalment d’acord. Com a pacient i com a membre d’ACSFCEM, nosaltres també rebutgem aquests suggeriments. Sobretot, quan molts pacients han millorat la seva qualitat de vida gràcies a la gestió de la malaltia publicada per aquesta guia.

  2. Kate

    So glad you wrote a letter about this to them. I was shocked to find this article when reading the news. It made me absolutely furious. I ended up writing my own letter to the Guardian, I just couldn’t let it be. But given that I’m just a single person with no professional context, I doubt it will be heeded much, but maybe all the contacts from the various charities might help make a difference. They really shouldn’t be printing stuff like that any more, it’s sort of the équivalant of giving a voice to climate deniers so long after the overwhelming majority of evidence pointed towards man-made climate change. No psychiatric professional should be given a voice to speak about this biological illness, and that would apply even if CBT combined with GET had been proven to be a safe and effective treatment. They wouldn’t be allowed a say on Ms or rheumatoid arthritis, or cancer treatment would they? Even where psychological therapies have been shown to support symptom burden, the psychology stuff stays as exactly that – a supportive role, not touted as the route to a cure, and even more dangerous for ME given the nature of the history it has. Annoying to see this stuff keep coming up still, it’s like whack a mole, you think you’ve got rid of it finally and another one pops up to try and derail everything.

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