The Guardian: Withdrawal of planned guidance on ME upsets patients

August 31, 2021

Advocating for behavioural approaches means condition has been relegated to a psychological problem, campaigners say

Natalie Grover, Science Correspondent, 30 August 2021

It was years in the making, involving thousands of scientists, medics, patients and campaigners all with a vested interest in the first landmark guidance on ME of its kind for 14 years.

After much wrangling, the contentious document about myalgic encephalomyelitis (also known as chronic fatigue syndrome) had finally been seen by all stakeholders – but it was not to be…


On the surface, the delay appeared to pit vulnerable patients – who for decades have suffered prejudice, disbelief and stigma surrounding their illness – against what critics consider to be bad doctors and faulty science.

But a closer look at the controversy points to distinct differences of opinion about the nature of evidence underpinning contested behavioural approaches to ME, and how it has been assimilated and interpreted…

Separately, patient surveys have suggested that Get and CBT have actually worsened symptoms in many patients, indicated Dr Charles Shepherd, an honorary medical adviser for the charity ME Association and former member of the Nice guideline committee.

PACE investigators have repeatedly defended the trial’s design and results. Michael Sharpe, a professor of psychological medicine at Oxford University and a principal investigator of the trial, said they used the best criteria available at the time to recruit patients.

The medical research bodies charged with overseeing the trial and its funding had suggested that the burden of patient assessment was too high and, as a consequence, the cumbersome activity trackers of the era were dropped.

Given there is no biological marker that can point to a definite ME diagnosis, recruitment into trials had to be – and still has to be – based on the patient’s report of their symptoms, Sharpe said.

“Why is it then argued that we should believe what the patient says about their symptoms to make the diagnosis – but not believe what they say about their symptoms after treatment? I think there’s a paradox there, and I think if you believe the patient, you believe the patient.”

Michael Sharpe

If patients are to be believed when it comes to improvements, then patients should be believed when it comes to worsening symptoms, the argument goes. But as campaigners point out, there is no avenue for the formal reporting of adverse health events resulting from non-pharmacological treatments such as Get and CBT…

Clare Ogden, the head of communications and engagement at the charity Action for ME, said:

“Any chronic condition is going to affect how you feel about yourself and your life, mentally, emotionally, spiritually, and … stress will make it worse. But we are mostly seeing … significant physical changes.”

Clare Ogden – Action for M.E.

Peter White, a volunteer with the charity group Forward ME, said funding was necessary to investigate the biological reasons behind ME, but much funding was focused on psychological research because people did not know where to begin on the biology. Yet this was because nobody had really ever looked into it, he said, creating a vicious cycle.

“All of the ME groups are supportive of psychological support in order to support the mental health of the sufferer,”

“The issue comes in when that support is presented as a [curative] treatment.”

Peter White – Forward-ME

Edwards agreed that nobody really had a clue where to start when it came to research. “But all this focus on CBT and exercise therapy has diverted attention from doing something useful for the patients,” he said.

Chalder, the CBT practitioner, said it was unhelpful to see the debate in black and white.

“This kind of dualistic thinking – it’s either psychological or physical – is not particularly helpful when you think about any disease. There are going to be a number of different things that are contributing to symptoms … and the same would be said for ME,”

Trudie Chalder

Meanwhile, the hunt for the biological/genetic underpinnings of ME is under way. DecodeME, the world’s largest DNA study of ME, is due to launch this autumn, and its findings will be closely watched.

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