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

I saw it come by on Twitter earlier today.

If in this situation that's the only arguments you can come up with after 30 years of advocating your approach....sheesh!



Edited to add that I'm now even more curious about the upcoming journal article, wondering if the therapy is not being applied "graded nor therapeutic" really is going to be their argument and how they'll elaborate on it.

 

The Journal of General Internal Medicine[1][2] is the official journal of the Society of General Internal Medicine[3]

The SGIM seems a mostly US based entity and has no obvious links to the UK BPS group, though its 3000+ members are said to be international. When the article is eventually published, letters to the editor might usefully raise the irony of this[4][5]:

[1] https://www.springer.com/journal/11606
[2] https://www.sgim.org/publications/journal-of-general-internal-medicine
[3] https://www.sgim.org/home
[4] https://www.sgim.org/communities/special-projects
[5] https://www.pcori.org/

 

Thank you @Arvo for this. You weren't unclear. Maybe I was.

Yes, I read the words "thorough clinical assessment", to mean looking at all spheres including the physical. But they advocate GET/CBT for CFS and ME. So, there doesn't seem to be any change. Unless as you say the full article might say something new.

Do you know if restricting tests to a minimum for suspected cases of CFS is an actual government policy? Or just what the BPS Movement recommends?

It's my understanding that doing little testing is an important part of some medical practices. IME this has been the situation for many decades .The BPS Movement's advice to do the bare minimum meshes nicely with what some are already not doing.

I'd like to add that physicians may be advised by their governing bodies and the state to do less testing for all patients.

It seems bizarre and risky to advocate little testing for any suspected disease, which at first look may be what patients have when they visit their doctor regarding fatigue and/or pain.

This is how we end up with a notable number misdiagnosed with "cfs" or ME, when eventually it's found they have cancer, Parkinson's, MS etc.

I will find that article called "Misdiagnosis on grand scale?" A couple studies noted in the article found that up to about 50% of people diagnosed as having "cfs" or ME, actually had other diseases.

There don't seem to be any legal repercussions for making these misdiagnoses.

I've looked up "clinical assessment". I'm not at my computer right now, but what immediately popped up was "clinical assessment" for suspected psychological conditions. The definition I saw included looking at all realms of the patient's situation. We know that's not how it has been played.

 

Desperate… and digging the hole deeper and deeper.

 

Who said this first, not sure but: "When you find yourself in a hole stop digging."

 

Re White's letter...
Even if it were true that physios helped people with every other illness known to man, through some kind of exercise programme... it wouldnt be 'odd' if it didnt help people with an illness characterised by worsening after any form of exertion beyond a certain threshold... or rather scrap that.... yes, yes if it were true that all other illnesses were helped... then yes it would be odd, yes, yes it IS odd, it IS unusual, thats the whole flippin point!! Thats what we've been trying to tell you for as long as you've been in the field... ME is unusual, difficult to understand, it's not what you expect, and it's made worse by things that make others better.
Why are they so obtuse that they think that something being different, means it cant be. It cant be like 'X' because everything else is like 'Y'. What a completely absurd idea.

Diabetes is made worse by levels of carbs that would not be particularly harmful to someone with, say, a broken leg. Is he really so dim that he thinks every illness is the same? FFS

 

Here is the article I've mentioned. I've posted it some time ago too. It was amazing, and yet shouldn't have been to see the percentages for misdiagnosis with CFS or ME. One scientific paper noted 40% of patients, and the second one noted 54% of people as having been misdiagnosed with ME:

https://www.meresearch.org.uk/research/other-resources/misdiagnosis-on-a-grand-scale/

 

What I find annoying is that if these people have a case then why didn't they input to the evidence gathering phase of the preparation of the guidelines as those like @Jonathan Edwards and others on this forum did, or send a response to the consultation on the draft guideline (published November 2020)? Why are they sending it to the Mail on Sunday (no offence intended) but not an audience I'd expect to be interested or indeed to care.

A well - the folks who are the key audience (NICE) gave their verdict and indeed there seems to be a positive attitude among the medical professionals who attended the round table.

 

The usual message coming out so far has been that most exercise programs are not graded, allow patients to go at their own pace. This is especially important to argue the (false) notion that there is no coercion, since by its nature GET is coercive. Odd that they would argue the opposite here, but of course one thing about lying a lot is that it's hard to keep track of various lies.

But I find so odd this weird assertion that ever single disease and illness known to medicine is improved by exercise when a simple list of conditions where it's irrelevant is obviously very long. I don't understand why no one ever points that out.

However I guess it would be news to the people offering those programs that turned out were not therapeutic. I do wonder what are the criteria for when it's therapeutic vs when it's not, especially given the common message that exercise is good for everyone about everything, hence the implication that it is always therapeutic.

It's a short letter and it manages to be completely inconsistent with itself in more ways than there are words to it. That's almost impressive.

 

What's worrying is that there may well be customers for the unproven products they are selling e.g. a purchasing/commissioning officer who listens to their sales pitch and doesn't research further----.

 

The alternative explanation is that the clinical trials conclude it's safe because the investigators do not accept any other outcome and redefine any harm out of existence. Every treatment is harmless if you just define the boundaries of harm so that they lie outside of what is happening.

Statements like exercise being good for any illness reveal a dogmatism that does not inspire trust in the objectivity of these researchers.

I have seen nothing that suggests the harm is caused by improperly delivered GET. This is an idea proposed by GET proponents that appears to have no observable basis. We do not know why this discrepancy in reported harm exists and it could very well be due to defects in the design of the clinical trials. It could also be that the real world ME population is vastly different from the one recruited for clinical trials.

 

Precisely.

 

In a letter. To the Daily Mail. I frankly can't understand the chain of events that would lead to that, it's so absurd and pathetic.

 

Yes, ME/CFS is different. Page 4 of the Canadian Consensus Criteria for ME/CFS provides a chart with responses to exercise for pwME; references provided.

One examples is oxygen delivery to the muscles which is impaired in ME, and not in healthy persons.

It's unlike other diseases, except perhaps Long COVID which may share this same unusual pattern:

https://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf

 

So what? ME/CFS is the condition under discussion.

 

No, they won't give up.

And this is why (unlike Jo) I think Sharpe, White, Chalder and friends will have a counter piece in the BMJ ready for when the guideline is finally released, or within a week or two following publication.