Invisible Illness A History, from Hysteria to Long Covid, 2026, Mendenhall (book)

In a recent blog post, Mendenhall explains that after legal threats from psychiatrist and PACE trial leader Simon Wessely, she “pulled [her] most pointed critiques of his research” from the book. Yet she introduces the trial segment with a sympathetic personal portrait of Wessely. Patients critical of these therapies are meanwhile presented as a faceless mass, described as “infuriated,” “outraged,” and “responding in droves” that “vilified” psychiatrists.
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I wonder how many other authors have been cowed by legal threats in this way. Very disappointing.

But, then, Mendenhall side-eyes “biomedicine” and “quick fixes like pharmaceuticals.” To treat chronic illness, she instead advocates for “meditation, steam rooms, sound therapy and massage, strength training for small, subtle movements … a warm pool for reimagining what it feels like to move freely,” and space for sharing stories, offered in a building like a gym, but dimmer.
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For f-ks sake.
 
This is getting worse and worse:
Mendenhall actually positions her “threshold” theory as a challenge to medicine itself: “In medicine,” she writes, “there is a tendency to push toward clarity, pinpointing exactly what is driving a physical symptom so that it might be rectified.” She proposes we stop doing this in order to tell a more “holistic story” of illness.

One such holistic story the book offers centers on a nurse who “felt her health slipping away” after five SARS-CoV-2 infections but managed to restore it with “radical rest,” which entailed flying to a resort in Mexico for two weeks. “While planning this trip brought her spirits up, she realized that positive thinking and meditation were making her feel stronger.” She changed her diet to “close-to-the-ground type of eating,” did liver cleanses, went on some walks, and thus escaped Long COVID — a neat recovery narrativethat avoids pinpointing infections as a rectifiable driver of ill health.
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and:
That the sickest patients’ survival may hinge on a cure, and that virology may provide it, is beside her point — for Mendenhall argues that recovery “is not about a cure.” The fact that recovery from Long COVID is rare means, in her view, that patients must stop chasing antidotes and focus instead on “reestablishing a new baseline and pace in life,” and “reimagining what a good life means.”

Invisible Illness thus depicts pacing as a practice in mindfulness through which patients are able to derive meaning from their lives. Erased are the people for whom pacing means survival, not catharsis. Erased are the people applying for medically assisted suicide because “a good life” isn’t compatible with physical torture, and death is easier to access.
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Thank you for pulling no punches, Shielding Cournoyer.
 
“reimagining what a good life means.”
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Why is it up to patients to re-evaluate their lives and lower their expectations?

This is letting medicine and research abdicate responsibility for doing their one job; provide health care, resolve the illness impacting a person's life.

It is not up to patients to move the goalposts to let them off the hook.

Why does their failure mean we are left with a fraction of a life? Who gets the responsibility for deciding who gets to have a meaningful quality of life? Surely this is a failing of moral duty?
 
JellyBabyKid said:
This is letting medicine and research abdicate responsibility for doing their one job; provide health care, resolve the illness impacting a person's life.
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I absolutely agree that it is the responsibility of the healthcare system rather than the patient and the inappropriateness of the text.

However, the job of medics is to provide what health care they know is useful. The problem here is that nobody knows what that is and it needs research. And nobody has the responsibility to do any particular bit of research nto any particular disease because society (and its elected government bodies) isn't that interested, either in funding it (MRC does not provide the $20M needed for sequenceME) or in having a system where individual researchers are given a responsibility for each disease problem, with security of their jobs in that field. Researchers are left to fight each other for grants and survive as best they can. Jo Cambridge has never had a substantive academic post, and that applies to a lot of very productive people. They get elbowed out by idiots who post on Twitter and hand each other money.

End of usual rant.
 
Jonathan Edwards said:
The problem here is that nobody knows what that is and it needs research
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Then the government have a responsibility for funding that research, as surely they have a duty of care to their constituents?

I am suggesting that this is a systemic issue and not responsibility of patients to solve.

They are abdicating responsibility for care and then blaming patients for the consequences while making them responsible for something they have no control over.
 
JellyBabyKid said:
I am suggesting that this is a systemic issue and not responsibility of patients to solve.
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Absolutely agree.
JellyBabyKid said:
Then the government have a responsibility for funding that research, as surely they have a duty of care to their constituents?
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But the government are just the people other people vote for to run things. In the UK it looks as if next time people might be voting for an even more dog-eat-dog system. Any Bevanite vision of a system devoted to the public good seems to be fading into the ether. The people have decided that their government doesn't need to spend money on keeping them well. They are happy to hear claims of money being wasted when their loved ones are dying on trolleys in corridors in A/E.

I gave up trying to do medical research because nobody would provide the necessary resources for me to treat my patients.
 
Jonathan Edwards said:
nobody would provide the necessary resources for me to treat my patients.
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It is still an abdication of moral duty and responsibility not to provide that funding and then blaming patients for the consequences of their failing.

This seems to be a circular argument, research is not done so healthcare is not available leading to a bait and switch to make patients responsible for their own harms and consequences of choices they did not make but were inflicted upon them.

None of this is ok and as citizens we should be demanding better. The question is how? Especially given the toll that ME takes.

A place we can start is rewriting these narratives that if we just practice the right wellness behaviors we can cure ourselves or reduce our expectations as to what a meaningful life could and should be. We need to push back on it and put responsibility back where it lies.
 
JellyBabyKid said:
A place we can start is rewriting these narratives that if we just practice the right wellness behaviors we can cure ourselves or reduce our expectations as to what a meaningful life could and should be. We need to push back on it and put responsibility back where it lies.
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That I would certainly agree with. It is part of a 'humanities' culture that pervades centre left media and poisons public debate. At heart it is the same dumb shamanism that underpins the BPS view. There is nothing sympathetic here, just self-serving pseudo-intellectualisation.

JellyBabyKid said:
None of this is ok and as citizens we should be demanding better. The question is how? Especially given the toll that ME takes.
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The only thing that can think of is the Swiss system where the public decides on specific political issues by referendum rather than relying on a political party with a mix of policies, some good, some awful, to decide. Maybe that is why Swiss medical care is pretty impressive, if not particularly innovative.

Perhaps with increasing access to the populous through the net other countries might wake up to the benefits of asking people to vote on individual issues rather than the colour of a rosette.
 
Jonathan Edwards said:
Perhaps with increasing access to the populous through the net other countries might wake up to the benefits of asking people to vote on individual issues rather than the colour of a rosette.
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Given that 'the populous' are generally no more likely to understand what pwME need than the politicians, I don't think a public vote would make any difference for ME/CFS.
We have seen what a pigs ear the government's ME/CFS consultation led to - even worse than the NICE guidelines, we seem to be at an impasse. Nothing new there, except the whole 'wellness' industry seems to have taken over any prospect of 'the populous' understanding anything about medical science.
 
Trish said:
Given that 'the populous' are generally no more likely to understand what pwME need than the politicians, I don't think a public vote would make any difference for ME/CFS.
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No, but the populous might vote to say that healthcare and medical research in general need at least adequate funding. They might not but one can hope.
Trish said:
Nothing new there, except the whole 'wellness' industry seems to have taken over any prospect of 'the populous' understanding anything about medical science.
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And that is the central grouse against this article. It is part and parcel of the do-gooder touchy feely wellness humanities-type approach to the real life practical problem of being seriously ill. The bait and switch as has been said. The friend who makes enemies redundant.
 
Jonathan Edwards said:
It is part of a 'humanities' culture that pervades centre left media and poisons public debate.
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As psychology graduate with an interest in epistemic injustice and how discourse is used to prioritize certain narratives and delegitimize others, I feel that there is a use for the discipline, even if it has been used against us, I think using the language they understand maybe the only way to change the narrative.
 
JellyBabyKid said:
A place we can start is rewriting these narratives that if we just practice the right wellness behaviors we can cure ourselves or reduce our expectations as to what a meaningful life could and should be.
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Agreed, the paper the other day claiming severe pwME could have an 'elevated experience of life' and still fulfill their 'potential' made steam shoot out of my ears.
 
Jonathan Edwards said:
I think the way to change the narrative is what forestglip and hotblack and ME/CFS Scientist and utsikt and jnmaciuch and others are doing pulling apart the genetics until we see what is wrong.
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As I said above, we need funded biomedical research. We also need to change the culture and narrative about ME & LC. It's less an either/or and more a both+and.

As my study of biology ended at second year degree level, I can only work on the area I am qualified for.
 
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