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.
 
rvallee said:
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.
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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
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A "range of published literature and contemporary treatment approaches within the field" sounds like more of the same B(P)S.
 
SNT Gatchaman said:
A "range of published literature and contemporary treatment approaches within the field" sounds like more of the same B(P)S.
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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.
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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.
 
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