By David Tuller, DrPH
George Monbiot, the British investigative journalist and longtime contributor to The Guardian, has written a corker of a column about the mistreatment and abuse of people with ME/CFS, including those with Long COVID. This newest piece follows two of Monbiot’s previous Guardian essays—in March, 2024, and October, 2024–that were equally blunt about the failures of the medical and academic establishments in this domain.
(I interviewed Monbiot about both of those columns, here and here.)
Here’s the headline of the latest effort: “Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed.” And the subhead: “Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a shocking social crisis playing out behind closed doors.”
Sums up the situation pretty well! And here’s the opening:
“I’ve spent my working life covering neglected issues. But few are neglected like the devastating chronic condition ME/CFS (myalgic encephalomyelitis, or chronic fatigue syndrome). In severe cases, the illness shuts down people’s lives almost entirely, causing an extreme loss of energy and a wide range of physical and cognitive symptoms that can prevent patients from working, socialising and, sometimes, even moving or eating. Yet these people have been more or less airbrushed from our minds.
“To find out what this neglect looks like in practice, this week I put out a call on Bluesky asking people with ME/CFS about their recent experiences of treatment. I was immediately inundated with horrifying testimonies. “I’ve just been completely abandoned”; “a 10-year waiting list for treatment”; “we’ve given up seeking medical support”; “stuck in limbo”; “I just felt utterly unheard, invalidated”. I’ve been sent hundreds of shocking and heart-rending accounts.”
To recap: Early in the coronavirus pandemic, Monbiot suffered some months of profound fatigue and other challenging symptoms after having COVID-19. The episode passed, but it awakened him to the struggles and frustrations of people whose symptoms, unlike his, proved to be persistent and not transient.
Prompted by that experience, Monbiot wrote a column in January, 2021, about what had become known as Long COVID. He soon came under criticism from Oxford don and PACE author Michael Sharpe. In a presentation at an insurance industry conference, Sharpe suggested that Monbiot’s column would trigger more complaints of Long COVID—and would presumably lead to more applications for health and disability benefits from insurance claimants.
Monbiot wrote a blistering response. The headline: “Apparently just by talking about it, I’m super-spreading long Covid.”
Fast forward to this week. Monbiot posted the following on BlueSky on September 21st: “Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers: Are any of you still being offered inappropriate (psych/GET etc) ‘treatments’?” The response, he writes, was overwhelming.
The column notes some key events of the last few years. First, Monbiot mentions the 2021 ME/CFS guidelines from the National Institute for Health and Care Excellence (NICE), which found the quality of evidence for GET and CBT as curative treatments to be “very poor” or merely “poor.” Next, he mentions the death the same year of a young woman from ME/CFS-related complications, and a subsequent damning report about lack of services for patients with severe disease. He mentions, but doesn’t detail, new biomedical findings.
Beyond that, the column is largely a litany of the unrelenting challenges still confronting patients despite the new NICE guidelines and the heightened public focus on the plight of severe patients. As he writes:
“So what has changed as a result of these shifts?…Many said they are still being treated as if they have a psychological illness, and still being pushed into GET and CBT. One patient told me: ‘I’ve gone from relatively mild to now mostly house- and bedbound, largely thanks to repeated attempts at graded exercise and “pushing through”.’ A few days ago, an NHS [National Health Service] clinic told another patient to undertake ‘graded exercise’ and ‘simply to walk, despite the fact I’m a wheelchair user’.
“One mother told me ‘the consultant cardiologist recommended a graded exercise programme’ and ‘a treadmill test’ for her bedbound son. When she told him this contradicted Nice guidelines, he replied: ‘Well, what do you want me to do?’ Another made the same challenge to her GP, but the doctor ‘denied this strongly and reiterated to my daughter that she should do the exercises’. This is very common: many doctors, I’m told, seem unaware of the new guidelines and react defensively when challenged. In many practices, GET has simply been rebranded as ‘building tolerance’ or ‘pacing up’ or ‘a little more activity each day’.”
Monbiot’s column is a harrowing but necessary read.
