ME battle ‘must not be repeated with long Covid’, says chair of Cambridge support group
The battles faced by sufferers of ME (myalgic encephalomyelitis) should not be refought by long Covid patients, says Dr Mark Harper, chair of the Cambridge ME Support Group, ahead of International ME Awareness Day on May 12.
Until very recently, the NHS treated ME – aka chronic fatigue syndrome – patients with cognitive behaviour therapy, or CBT. This included physical exercise programmes entirely beyond people who struggled with the simplest of domestic tasks like making a cup of tea.
“ME is a serious neurological disorder but medical education is way behind the times,” says Mark of the treatment pathway. “There’s no cure or effective treatment as yet, but it’s demoralising to be told they’re faking it. A quarter of our members are pretty much bedbound most of the time: three-quarters of them can’t work.”
Mark was the managing director of a consultancy called Cambridge Applied Physics, a company he had joined in 1995.
“I’m a physicist,” he says. “I got ME in the 80s, in my 30s. I caught chicken pox from my kids, then got what seemed to be post-viral disease, and it didn’t pass.
“As I’ve got older the disease has got worse, and I had to retire. I started the support group for people with ME. It’s mainly social as people with ME don’t go out, and it can be a humiliating and degrading situation with GPs. Half of the GPs don’t believe it’s a real disease.
“The change has got to be in education and in the drug tests currently being conducted for ME in the US and in Montreal.”
The issue centres on the psychology sector, which decided that ME is a psychological disorder in a now-discredited study, the 2011 PACE trial. (PACE is short for ‘Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation’.) The official policy until now has been to offer CBT to wean ME sufferers off supposed ‘false illness beliefs’, and graded exercise therapy (GET), a regime of ever-increasing exercise supposed to overcome physical deconditioning.
Pushback against this diagnosis has not been easy when the basic experience of ME sufferers is crushing fatigue and the serious worsening of symptoms following any form of exertion – but the situation is changing. Revised guidelines for the management of ME from the National Institute for Health and Care Excellence (NICE) are due to be approved – and they are a radical shift away from psychology-based treatments.
“Since one of the defining symptoms of ME is that over-exertion worsens the illness, GET has damaged the health of many,” says Mark. “It is a scandal that these quack cures were pushed for so long. A drug which had thousands of reports of health damage would be taken off the market very quickly, but these treatments have been recommended since 2007.”
The new NICE guidelines were due to be implemented as NHS policy this month but have been delayed until August 18.
“One assumes they will take peoples’ views into account,” Mark suggests. “Now, GET is not a treatment, thank goodness, and CBT can be used but it is not seen as a cure.
“There are are discussions still taking place about the inclusion of CBT in any form in the new guidelines. CBT has still been included, not as a curative treatment which it was previously, now it’s supposed to help with psychological distress. However, we want CBT to be removed because the NHS has a few centres for treating ME. It’s clear that GET won’t be mentioned in the new guidelines, but even just the retention of the name ‘CBT’ means that people practising CBT and GET will be able to carry on.
“There’s got to be a complete elimination of the term, though I’ve nothing against CBT as it was previously used – as a way to avoid spiralling down into negativity.”
The issue has come under renewed focus after one of the key supporters of the use of CBT, Professor Michael Sharpe, of the University of Oxford, drew similarities between chronic fatigue syndrome and long Covid.
The psychiatrist, who in 2019 said he had withdrawn from ME research because it had become “too toxic” in the internet age, wrote in a letter to The Guardian that “while most patients referred to post-Covid clinics by GPs do not have evidence of persisting and serious organ damage, some are very anxious that they may have”.
Prof Sharpe has said he has emphasised the need to assess long Covid patients individually “as many different factors – biological, psychological and social – may be contributing to their illness”.
The implications of this outraged the writer and environmentalist George Monbiot, himself a long Covid sufferer – and the situation brought to his attention the years-long battle of the ME patient community to have their condition fully recognised.
Citing the fact that the original PACE trial data was withheld from the public until it was ordered to be released by a tribunal in 2016, at which point it was reanalysed and found to be supporting the wrong conclusions. But, fears Monbiot, Prof Sharpe “seems to have transferred his claims about treatments for ME/CFS to long Covid”.
Mark fears that any new mismanagement of the science could result in GET being used to treat long Covid patients.
“It’s crucial that long Covid sufferers don’t go down that rabbit hole and that we don’t end up with people who are also much sicker than they need to be as a result,” he says. “The people who propose using GET in this way are blocking the development of proper treatments.
“They have made statements to the effect that funding biomedical research into ME would only encourage people into thinking they had a real illness. This is an intellectual descendent of the line from [20th-century psychiatrist Sigmund] Freud who said of abused patients that they were merely engaging in erotic fantasy.”
On previous ME Days, Mark would help run a stall on Cambridge Market, raising awareness about the disease, but this year the outreach will all be online. The Cambridge group is entirely independent, though there are links with similar groups in Peterborough, north Norfolk and Suffolk. The Cambridge ME Support Group appears on the ME Association’s website as an accredited organisation.
- Wednesday, May 12 marks the 29th anniversary of International ME Awareness Day. The idea originated with Thomas Michael Hennessy, Jr, a US-based advocate for legitimising the illness in the face of government and insurance industry attempts to minimise the devastating effects on individuals and its cost to society as a whole. He chose May 12 because it coincided with the birthday of Florence Nightingale, the celebrated English social reformer and statistician, and the founder of modern nursing. Nightingale became chronically ill in her mid-thirties after returning from the Crimean War with an ME-like illness which often left her bedridden for the last 50 years of her life.