WAMES supports NICE guideline implementation in NHS Wales

Graded Exercise Therapy and the PACE trial have raised their ugly heads again in an article by Prof Trudie Chalder and friends. They have launched a scathing attack on the ability of the UK health guidance organisation NICE to assess scientific evidence and patients  to understand their illness and assess the harm they have experienced from treatments.

‘Same old same old’

Unfortunately media outlets have taken up the story without researching the claims.  Many researchers and commentators over the years have exposed the shortcomings and lack of evidence of the claim that Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) can treat ME/CFS. They are finding there is nothing new to say this time round. There is no new evidence to critique. What is different is a few more voices with no experience of ME/CFS have joined the chorus.

The patient voice – what we like about NICE guidance

People living with Myalgic Encephalomyelitis (ME) tell WAMES that they heaved a big sigh of relief when the revised NICE guidance was published in October 2021. It wasn’t perfect, but at last they recognised the description of their illness in the pages of the guideline.

The objectors say a ‘new definition of CFS/ME’ was created. It wasn’t new to us! Having become used to sceptical and disbelieving doctors there was cautious optimism that at last we might be believed.

WAMES can understand that past providers of GET and CBT will feel miffed they no longer have such a wide pool of patients to draw from, but why pursue a patient group that doesn’t wish to be courted? Why are they blindly refusing to accept research that supports Post-Exertional Symptom Exacerbation (PESE)?

If GET and CBT work for some patient groups, then it makes sense to seek them out and offer it to them, but those of us who know how our symptoms can become so much worse after all sorts of activity say LOUDLY “Leave us alone. Your GET and CBT will hurt us much more than it will help”.

WAMES joins the the World ME Alliance in writing to the Guardian

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.”

…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.

WAMES says: #ImplementNICEmecfs

NICE committee member comments on the draft version of the article:  Trial By Error: Usual Suspects Say NICE Made Eight Errors; Nonsense, Says Committee Member Adam Lowe

In the media:

Guardian: ME/CFS guidance that discourages exercise is flawed, say researchers

A NICE spokesperson said: “We reject entirely the conclusions drawn by the authors of this analysis, and in particular their conclusion that Nice has not followed international standards for guideline development which has led to guidance that could harm rather than help patients. In developing our guideline, as well as bringing together the best available scientific evidence, we also listened to the real, lived experience and testimony of people with ME/CFS to produce a balanced guideline which has their wellbeing at its heart.

Irish news: ‘Shortcomings’ identified in chronic fatigue syndrome guidance’

Dr Charles Shepherd (person with ME/CFS) said: “The Nice Guideline Committee (of which I was a member) spent an enormous amount of time over three years reviewing all the evidence on CBT and GET from both clinical trials and from people with ME/CFS.

“It concluded that the clinical trial evidence for the use of CBT and GET was of very poor quality and that people with ME/CFS consistently reported that CBT was ineffective and that GET made their condition worse.

The Canary: The Guardian has thrown the ME community under the bus, using bias and misinformation

The Guardian used “chronic fatigue” in both the original headline and opening paragraph. This is not ME: chronic fatigue is a symptom, not an illness… It has since updated the article to use ‘ME/CFS’ and ‘chronic fatigue syndrome’.

… the entire article managed not once to include a patient’s voice – but did include a doctor interviewee claiming: Many patients are sensitive to the inference psychological factors such as stress may contribute to the condition and dismiss psychological treatments such as cognitive behavioural therapy.

This is something the majority of patients would argue is false – and gaslighting.