Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis, 2021, Sharpe, Chalder & White

Disorders where the patient imagines to have an illness are real too.

Being cured of such a disorder doesn't mean the patient didn't have it.

They've set up a belief system where patients telling them the illness is actually real is considered confirmatory evidence that the patients are imagining the illness.

One could say they are stuck in a vicious circle of false illness beliefs...

 

very good

"NICE is behind you!"

All very good. Thank you i needed the laugh today.

ps welcome to S4 @Reginald VelJohnson Edit: oh sorry just seen you joined in august must have missed that, yr avatar said new member so i assumed.... well this is my welcome anyway lol

 

The songs we're singin
not for all the pain you're bringin
We can live without it
We cry in all honesty
What would life be
Without your PACE & FITNET
cant you see...

that we say
Thank you for the MUSic
without it we are free....

sorry unless you know the ABBA song that will be like gibberish... well maybe even with it ha ha

 

Abstract

Evidence based care for people with broken leg syndrome and skeletal fracture

Journal of General Medical Gaslighting
Accepted/In press 1 Oct 2021
King's Authors

Abstract

Broken Leg Syndrome (BLS), sometimes referred to as skeletal fracture (SF) and often as BLS/SF, is an illness characterized by aching bones and other symptoms, typically worsened by walking. The main evidence-based treatments are rehabilitative in nature and include specific types of cognitive behavior therapy (CBT), and graded exercise therapy (GET).

In this article we briefly review the evidence for their safety and effectiveness and propose that much of the controversy about them arises from misunderstandings about their nature and delivery. In particular, we emphasize that successful rehabilitation from BLS/SF does not indicate that the illness is not real. We recommend that rehabilitative treatment always be preceded by a thorough clinical assessment and delivered by appropriately trained therapists working in close collaboration with the patient.

We conclude that properly applied rehabilitative treatments offer the best hope of safely improving aching bones and function for patients with BLS/SF. However, we also recognize the need for more research into the treatment of this neglected condition, especially for those most severely disabled by it.

 

This is just a misguided attempt to rub salt into the wound .... and clutching at straws....

Looks an interesting read?
Clutching at straws in the wind
The Nature of Human Intelligence,

by Robert J. Sternberg (Ed.) (Cambridge University Press; Pb £26.99) reviewed by Guy Claxton.

"......We also get multiple revisitings of hoary old debates about nature and nurture, what intelligence tests ‘really’ measure, the centrality (or otherwise) of conscious, deliberate, abstract rationality, and whether ‘intelligence’ is a separate general purpose faculty, distinct from say personality or memory, or not.These will be useful for readers who are not already familiar with the many places where they have already been discussed, sometimes ad nauseam....Arguments are rehearsed, but they do not cohere into any sense of deepening understanding, let alone an emerging consensus, about what intelligence is, and how it arises (or doesn’t) in the course of meaningful engagement with the real world. There are lots of pet theories, and a jumble of different people’s favourite nomenclature, but they feel shallow now, lacking any real grounding in cutting-edge cognitive science.
For example, the ability to intervene intelligently in the flow of events in order to progress one’s own interests clearly depends on an astute, informed capacity for prediction and anticipation. Yet detailed, intricate work on how prediction is central to the whole nature of cognition – see, for example, Andy Clark’s Surfing Uncertainty – has not yet penetrated the bubble of the intelligence research community. And recent work that challenges the core assumptions on which the study of intelligence has been traditionally based, some of which is now widely available in accessible form, is largely missing...'

Guy Claxton is Visiting Professor of Education at King’s College London.
BPS Members can discuss this article
Find more from him in our archive.

 

I hope this references my paper where we surveyed 203 consecutive patients presenting at the emergency department of a local hospital complaining of leg pain. We found the strongest predictor of pathology-confirmed fracture was the patient's belief that their leg was fractured. Our conclusions recommended the investigation of CBT for BLS to address the patient's unhelpful belief that their leg is fractured, which is clearly a perpetuating factor in the continuing disability seen in this distressing condition.

 

Trial By Error: PACE Authors Now Blame “Misunderstandings” for GET/CBT Criticisms

"It is hard to know what to make of the news that a peer-reviewed journal has actually accepted a PACE-reunion paper from the three lead investigators—Professors Michael Sharpe, Trudie Chalder, and Peter White. Even more so for a paper titled–without irony, it seems–“Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis.” This surprising event occurred on October 1st, according to a notice on the website of King’s College London, Professor Chalder’s home base.

The full text has not yet been made available by the professors, as far as I can tell, and the Journal of General Internal Medicine hasn’t formally published the article yet. (Perhaps more renowned journals were not interested?) So I can’t yet comment on the substance of the arguments they present to persuade readers at this late date that graded exercise therapy and their specialized version of cognitive behavior therapy are in fact “evidence based.” They definitely confront a tough challenge, since the most recent official assessment of PACE and related research has found the quality of the evidence for the main claims of effectiveness is either “very low” or merely “low.” This scathing assessment emerged from an authoritative source—the UK’s National Institute for Health and Care Excellence, the agency charged with developing clinical guidelines."

https://www.virology.ws/2021/10/23/...ame-misunderstandings-for-get-cbt-criticisms/

 

I'm not too keen on that sort of point (it's like Robin Murray's response to the PACE recovery paper in Fatigue). Anyway, in this case, the Journal of General Internal Medicine reports an impact factor of 5.128, compared to the Journal of Health Psychology's 3.231, with Fatigue being much lower (maybe harder to compare as it's a new-ish journal?).

If, with NICE, we have some authority slightly on 'our' side, it's still worth avoiding the sorts of arguments that those with authority on their side previously used imo. Also, isn't the most recent assessment of PACE and related research the new American one?

It's hard to respond to the substance of a paper that we can only read the abstract of but I'm uncomfortable with any implication that 'authority' in this area is to be respected.

 

"...thorough clinical assessment..."

If they did thorough testing, and not just an in-office clinical assessment which can sometimes tell one diddly-squat, they would find reduced cerebral diffusion in some, POTS in many, other signs of autonomic dysfunction etc. One would hope these findings would curb enthusiasm for processing pwME through "treatments" with a good potential to do harm. But maybe not...

 

In Canada, internal medicine is a specialty. I've never heard of internal medicine called "general" here. Is there a distinction in the UK?

Clever shot though, addressing this to internal medicine doctors who maybe don't see a lot of pwME given the policy to not do in-depth testing.

My own experience with one of the internal medicine specialists I saw was not helpful to say the least.

 

Further to "thorough clinical asessment", the quality, time taken, areas explored varies, of course.

But when one repeatedly tells a physician about for example, dizziness and balance symptoms, and this is never examined, nor addressed in any way, not even with a Romberg test, this cannot be viewed as a thorough clinical assessment. I would hazard a guess there are many other examples.

 

I would guess they submitted this paper whilst still holding out hope the new guideline would not get published, and maybe publication has been held off until the outcome of NICE's round table was known. Maybe it is never going to be published now?

 

Yes.

And, as a patient, I have been concerned about especially therapists asking me if the treatment is helping, or at the close, has it helped.

Sorry to say there have been a number of times where treatments unrelated to ME have not helped. Not to mention of course ME!

I am reluctant to tell the therapist the treatment they may have even raved about as wonderfully effective is crap. It doesn't go over well. Well...I don't use the word "crap", or even a reasonable facsimile. If they try other treatments, and I still don't feel better, it becomes my failure, not their's.

We as patients are in a one down situation. Especially if disability benefits require one tries every "relevant" treatment. Especially ones promoted by the state. Patients in this situation realize if they tell the therapists they are not recovered or are worse, there may be notes put on file describing the patient as non-compliant. If benefit schemes find this out the patient may be hooped.

If therapists are assured by BPS higher-ups that GET and CBT cure pwME, then someone who says they are not much better or cured could be very suspect.

ETA: added "are", and corrected spelling

 

"threatments":great! This word should be adopted....

 

Yes.

And, just keep repeating. Repetition, repetition...

 

Once upon a time I was told my pain was real. The cure, a vacation.

Seeking proper biomedical relief for this dreadful, and perhaps dangerous condition took several weeks.