"The Cost of Indifference: The sad and curious case of the chronic fatigue syndrome" (Quillette)

Sharing some quotes from the article for folks who don't want to give their email address to Quillette:

The explosion of ME/CFS cases during and after the COVID-19 pandemic appears to confirm a longstanding hypothesis that the condition usually emerges from an immune insult that attacks the nervous system. The illness can vary in severity and symptoms, and the absence of a known cause or diagnostic test has led to decades of unhelpful psychologising. A literature review in 2020 found that between a third and half of all general practitioners in the UK do not even consider the disease to be a distinct clinical condition, and those that do have no idea how to treat it.
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Despite decades of evidence of ME/CFS’s biological roots, life-saving medical research and treatment has been hindered by the lingering view among doctors, researchers, and the general public that the disease is simply a product of the patient’s attitude and imagination. Although major public-health agencies now acknowledge the existence of ME/CFS, and although the disease is estimated to cost the US between US$18–50 billion a year in lost labour and medical expenses, it still receives very little research funding. In 2024, just US$10–13 million was earmarked for research into ME/CFS, and the total was even lower in 2025. (For context, in fiscal year 2022, Parkinson’s disease received US$259 million in research funding from the NIH.)
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One of the reasons for these discrepancies is that much of the suffering experienced by ME/CFS patients remains invisible to the public. Some of the most severely ill patients are reclusive and too sick to protest, so we simply disappear from sight and are forgotten. And the symptoms of ME/CFS lie so far outside the realm of everyday experience that the illness can be difficult for healthy people to understand. The cognitive symptoms and loss of energy, meanwhile, make it difficult to explain what’s happening and it contradicts our intuitive understanding of disease, which is that the sufferer either gets better or he gets worse until he dies.
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ME/CFS has been psychologised by a framework known as the biopsychosocial model, spearheaded by an influential group of psychiatrists in the UK. Proponents of this model maintain that the disease has no biological basis, and that it is an “illness without disease.” According to this view, patient symptoms arise from a combination of mental distress, unhelpful beliefs, and a vicious cycle of inactivity.

The PACE trial, conducted in 2011 to examine ME/CFS, was the most expensive study of the disease at the time, partly funded by the Department for Work and Pensions and then published in the Lancet. It purported to demonstrate that ME/CFS patients could recover with a regime of therapy and exercise designed to break bad mental and physical habits. PACE was uncritically accepted by public agencies and media around the world, and it would be used to influence international treatment guidelines for ME/CFS.

But the PACE study has since been conclusively debunked. Its multiple faults include data manipulation, questionable methodology, and conflicts of interest.
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As George Monbiot has observed, “[T]here are very large numbers of people suffering to an absolutely outrageous extent … with very long term conditions that have absolutely horrendous impacts on their well being, and the fact this is not one of our very top medical priorities is itself a massive scientific scandal.”
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skronen said:
Hi Jonathan, can you elaborate on this a bit? What abnormalities do you think are worth citing in future pieces, or none at all? What don't you like about the comparison to AIDS?
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There aren't any abnormalities much demonstrated in ME/CFS so far. The genetic risk factors revealed by DecodeME are the little we have to go on at present. Almost all of the folklore about ME/CFS as a multisystem disease etc. etc. is baseless. The history has also been manipulated. ME/CFS has pretty little in common with AIDS. There is not much evidence it is in any way new. Its relation to epidemic infections is a side issue. It relation to viruses is completely disanalogous to AIDS. There is no immunodeficiency. The stigma and medical involvement are for quite different reasons and have followed quite different timelines. And so on. The analogy with AIDS sparked off in the late 1980s and led to some of the least good research. I think it is an unhelpful distraaction.

I got in terested in ME/CFS about ten years ago and spent a lot of time helping to unpick the pseudoscience woven around it by the biopsychosocial people. That story has largely been told, even if there are still biopsychosocial people banging their drums. But more recently I have come to understand just how much pseudoscientific myth there is around the 'biomedical' side of ME/CFS. The recent blog post by @ME/CFS Science Blog gives a very nice picture of how much we don't know.

We are just now beginning to get some real clues to what ME/CFS is about. There are links to genes involved in neurons and at least one linked to the innate immune response. It may be a central nervous system problem but it does not appear to be inflammatory.
 
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