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

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.

Circular definitional games with words.

People who have recovered present the same as those who don’t and they almost always treat it as a functional disorder.

Define 'recovered', without using subjective assessment measures.

Rejecting psychological and behavioral contributors because they’re seen as invalidating is itself very common in people with somatic symptom disorder.

Which is a perfect double bind. Not to mention false.

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.

Brave claim, sparky. Very brave.

There is way too much emphasis placed on the findings in the biomedical research. They are often contradictory and unreplicated with very poor methodology.

Oh the irony. Best you stay away from mirrors.

No findings are said to have clinical relevance because they often don’t make sense with the patient presentation.

Which is a typical situation before the underlying mechanisms of just about any phenomenon are understood.

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.

That characterisation is pure sophistry, and projection on your part, par excellence. You have been trained well.

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!)."

Unfalsifiable, cowardly, and cruel. A complete abandonment of your professional responsibilities, standards, and ethics.

Your blame game is a tactic straight from witch trials and the Spanish inquisition. It's just DARVO all the way down.

You really don't do self-awareness, do you.
 
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Given that he's cherry picking sources defined as "good quality" and conflating causation and correlation I would ask him what study evidence it would take to change his mind? And is a robust genetic study enough to reconsider that position?

I worry now whether the decode results will be enough to dent this pervasive viewpoint.
 
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!)."
Speaking of medical education, I hope somebody is collecting all this mad rubbish, in order to educate the profession on what happens when you make logic-free assumptions and treat the resultant conclusions as fact.
 
Part of a comment by Zachary Grin

There is way too much emphasis placed on the findings in the biomedical research. They are often contradictory and unreplicated with very poor methodology.

We are through the looking glass at this point.

What's that saying about taking the plank out of your own eye before pointing out the speck in someone else's....

I think irony just died
 
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.

And yet important discoveries continue.

Not ME/CFS related (far as I know), but researchers have discovered a new organelle:

"...we have identified a previously unrecognized vesicular organelle complex with a unique membrane topology."

Wikipedia article on organelles.
 
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.

And yet important discoveries continue.

Not ME/CFS related (far as I know), but researchers have discovered a new organelle:

"...we have identified a previously unrecognized vesicular organelle complex with a unique membrane topology."

Wikipedia article on organelles.
It is the classic cliche BS rhetoric one-liner said for everything that type ever wanted to pretend for.

Making the patients responsible for the inaction or refusal to look at

Someone needs to do the book of BS one-liners for psychosomaticists/deniers/bigots in the form you get those listy books to give people as quirky christmas gifts.

'evidence-based' would be another whole chapter. And I could think of a few good authors to suggest for that one. Be good to have a few illustrators with it too - like Quentin Blake brought alive the Roald Dahl stuff
 
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.
I have not seen any biomarkers for «competence» in his tests. I guess it doesn’t exist then.
 
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