Petition to request updating of the description of ME/CFS in Kumar and Clark’s Clinical Medicine textbook.

I think the way this is phrased (already discussed in a previous thread when a draft version was first posted) is counterproductive and may damage us further.

Elsevier is not going to take these weak arguments seriously. Patient advocacy groups have been making the same arguments for 40+ years and nothing has changed because these arguments are faulty and ineffective.
 
It likely won't matter to us in the near future, but there will be a tipping point and the sheer mass of people telling the medical profession that they are wrong will be critical in making sure it stops happening. If it's to happen anyway.

I'm not really sure whether there is more consistent and accurate warning about debunking psychosomatic ideology, or climate change. For sure climate science going back decades is solid, but it doesn't take that much to debunk psychosomatic ideology, certainly doesn't take satellites and a space program, and the mass of people, reports, documentaries, articles, papers and so on is probably far larger than it is for climate change and the effect of greenhouse gases.

IMO that's the only way psychosomatic ideology gets shot twice in the back and buried deep for good: the sheer embarrassment from all the ignored warnings. It won't matter until the tipping point, but until then the more there is, the quicker the end of this wretched ideology happens. The fact that medical publishers don't take this seriously only adds to the embarrassment, because it may not be perfectly argued, but it's technically correct, the best kind of correct.
 
It likely won't matter to us in the near future, but there will be a tipping point and the sheer mass of people telling the medical profession that they are wrong will be critical in making sure it stops happening. If it's to happen anyway.

I think ultimately the only thing that will make a difference is incontrovertible and replicated evidence of organic pathology. Telling the medical profession that they are wrong while citing political statements from 2006 and personal opinions of some doctors like Komaroff is never going to make one iota of difference. If these sorts of arguments worked, we wouldn't be where we are.
 
Response from Elsevier as posted on the petition page.

Dear Mrs Ashenfelter

Thank you for contacting Elsevier to highlight the petition at change.org calling for changes in the way ME/CFS is handled in Kumar and Clark’s Clinical Medicine. The book’s editors are aware of the petition, and of the strength of feeling held by many ME/CFS patients and their friends and family members about the way the condition has traditionally been approached within the medical profession.

They have borne this in mind when producing the next (11th) edition of the book, which is due to be published in 2025. They have worked with the specialist chapter authors to produce content which addresses the concerns of patient groups, whilst being based on the range of published literature and contemporary treatment approaches within the field.

Yours Sincerely,

Madelene Hyde

Vice President Global Medical Education Content

A "range of published literature and contemporary treatment approaches within the field" sounds like more of the same B(P)S.
 
A "range of published literature and contemporary treatment approaches within the field" sounds like more of the same B(P)S.
Let’s include every opinion as if they are facts! Reminds me of this quote by Thomas Sowell:
“It is bad enough that so many people believe things without any evidence. What is worse is that some people have no conception of evidence and regard facts as just someone else's opinion.”
 
My first thought was that it's a shame the petition title is so bland; it might have got a lot more signatures if it was something punchy like 'Stop classifying ME/CFS as a psychiatric condition'.

But then again, I can't imagine it would have got a different response from Elsevier if it had 100,000 signatures rather than (nearly) 10,000.
 
They have worked with the specialist chapter authors to produce content which addresses the concerns of patient groups, whilst being based on the range of published literature and contemporary treatment approaches within the field.

I really don’t like that “whilst”. It implies patient experiences don’t fit the literature and “contemporary treatment approaches”, which makes me worried about what they will publish. I’m assuming “contemporary treatment approaches” is GET/CBT.
 
Last edited:
Not surprisingly, given the bias inherent in this chapter, there is no mention of the updated 2021 guidelines for ME/CFS from the National Institute for Health and Care Excellence, which rescinded recommendations for GET as well as for cognitive behavior therapy presented as anything other than supportive. Instead, these paragraphs in the textbook are full of biopsychosocial blah blah, like this:


“Delivering and explaining a positive diagnosis of MUS/FND is the stepping stone towards a successful management plan that may include guided self-help, CBT and input by several other members of a multidisciplinary team (e.g. physiotherapy or speech and language therapy, depending on the nature of the FND symptoms). Recovery depends on positive patient engagement with the process.”

Protests by patient groups aren't going to change the minds of people who write this stuff, because it just feeds their perception that the patients' negative attitude is the underlying cause of their problems. We desperately need informed medical professionals to speak up.
 
Protests by patient groups aren't going to change the minds of people who write this stuff, because it just feeds their perception that the patients' negative attitude is the underlying cause of their problems. We desperately need informed medical professionals to speak up.
Sadly exactly this. The psychological trap of the more you protest the more you seem unbalanced and reaffirm their original beliefs
 
Dear god. We are in worse position than 20 years ago. The UK medical establishment rolls on crushing ME patients to oblivion.

But now there is also a massive industry of commercial 'cure' companies pushing science-free mind ideology and so called neuroplasticity 'fixes'. And now they are influencing the NHS.

One day the ME patients will be outnumbered by the exploiters of our illness, grifters never give up. They gain so much off our backs.

I have no hope left. Even if bioresearch throws up credible, unassailable evidence on ME - the UK medical establishment and NHS will just ignore it and roll right over it and do what they've always done. Justify cruelty. Harm us. Never ending nightmare.

I've learned so much about human behavior by being on the wrong end of it. And it's chilling.
 
Last edited:
I'm a very weird person and all, and I generally adopt the idea that textbooks, especially at the grad school level, should definitely be accurate, but clearly the authors of this book don't mind.
Delivering and explaining a positive diagnosis of MUS/FND is the stepping stone towards a successful management plan that may include guided self-help, CBT and input by several other members of a multidisciplinary team (e.g. physiotherapy or speech and language therapy, depending on the nature of the FND symptoms). Recovery depends on positive patient engagement with the process.
There is literally nothing supporting this. In fact all the evidence proves to be the opposite. This could be written, mostly unchanged other than a few words, about any cult, pseudoscience or alternative medicine, as well as most superstitious beliefs. When what you sell is a scam, you need suckers, and suckers need to engage with the process, or it doesn't pay off.
Dear god. We are in worse position than 20 years ago. The UK medical establishment rolls on crushing ME patients to oblivion.
Generally speaking, despite Long Covid having put the whole blurry picture into sharp focus, I'm afraid you are correct. And not just in the UK. Things would obviously have worsened anyway, biopsychosocial ideology guarantees it, but that it's happening despite LC unfolding in the context of a global pandemic is really a disturbing indictment of just how much truth is a social construct, and facts matter very little. Even to academics and professionals, it turns out.

About the only facts that actually matters is whether people can make or save money out of them. Everything else is irrelevant, vibes and culture overwhelm everything. Once it's possible to make money out of treating us, people will throw themselves at it, but until then, it's off to the trash chute.
One day the ME patients will be outnumbered by the exploiters of our illness, grifters never give up. They gain so much off our backs.
Actually, it's even worse than that: they actually gain very little from it. Most of the people involved would find nothing different in any aspect of their daily lives if they never got involved in this. There are a few grifters, but they'd simply use different labels for the same thing. People are absurdly cheap, willing and able to throw millions of people in the trash for maybe about the equivalent of a new refrigerator every year in net gain, and generally not even that.

The total losses are several trillions in the last century, and even the main beneficiaries, the insurance industry and government welfare agencies, have all lost far more than they would have gained if they had taken this seriously and solved it.

It's not stupidity that is infinite about humans, it's absurdity. We are an absurd species. As one final bit of absurdity in this, is the popular meme among the ideologues that "MUS" isn't medical, psychiatric or psychological, it's between all of them, or something like it. But here it finds itself in psychiatry, for absolutely no reason. Commitment to absurdity, I guess.
 
Part of a comment by Zachary Grin under David's excellent article:
(don't read if you are feeling vulnerable)

"Regarding ME/CFS, the textbook’s framing is not “biopsychosocial dogma”…it reflects the consensus in clinical medicine. The editors likely chose “encephalopathy” over “encephalomyelitis” because there is no evidence for ongoing CNS inflammation (“-itis”). The term “encephalomyelitis” is only preferred by patients because it makes the condition sound more serious (in their opinion), but it completely misrepresents the condition.

ME/CFS shares many of the same characteristics as other functional disorders (acute/subacute onset often after a physical or mental stressor, fluctuating symptoms often moment to moment or day to day, and disability level out of proportion to exam findings/pathology). Also, it is highly comorbid with them and responds to similar treatment frameworks. People who have recovered present the same as those who don’t and they almost always treat it as a functional disorder. Rejecting psychological and behavioral contributors because they’re seen as invalidating is itself very common in people with somatic symptom disorder.

If there was a disease process underlying ME/CFS it would have already been found. No matter the cause, organ damage/disease is quite easily identified with current tools – clinical exam, routine bloodwork, and diagnostic imaging. There is way too much emphasis placed on the findings in the biomedical research. They are often contradictory and unreplicated with very poor methodology. No findings are said to have clinical relevance because they often don’t make sense with the patient presentation. Perceiving clinicians as incompetent and malicious because they acknowledge the clear psychosocial factors that led to the development and maintenance of the condition is just a projection. Unfortunately the ME/CFS community is unlikely to see any progress until they can acknowledge that their symptoms are not signs of damage/disease, psychosocial factors are involved in their illness and functional disability, and that none of this is their fault and it is their responsibility to recover (with guidance and support of course!)."
 
Last edited:
Back
Top Bottom