UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

[Jonathan Edwards]

Worse, for some BPS HCPs regard reports of harms as further evidence of the patients’ mistaken beliefs!!

And this is where the self-contradiction shows itself.

If the aim of treatment is to reduce mistaken beliefs then the fact that patients believe they are worse shows that the treatment does the opposite of what was intended - in its own terms it would have to be said to cause harm.

In other words if you don't believe the patients that is even better evidence of harm!

 

[Suffolkres]

Learn about M.E.
Episode 3 - Learn About ME and new NICE Guideline
December 08, 2021 Action for M.E.

Learn about M.E.
Episode 3 - Learn About ME and new NICE Guideline
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Station: Buzzsprout / AfME
Date: December 8, 2021
WebRadio: https://www.buzzsprout.com/1717775/...-guideline-on-me-cfs-diagnosis-and-management
Ref: https://www.buzzsprout.com/1717775

Item: Nina Muirhead, Gregor Purdie, Helen Brownlie


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Show Notes
In this third episode of our Learn about ME podcast series, we hear from, Dr Nina Muirhead, creator of the Learn about ME CPD learning module and, Dr Gregor Purdie, about the importance of highlighting the changes in the newly updated NICE guideline on ME/CFS: diagnosis and management. They are joined by, Helen, who lives with ME and who volunteers for The 25% ME group. Helen shares her experience in order to encourage healthcare professionals to implement the changes in the guideline. We hope this episode can increase the likelihood of people with ME getting appropriate care and support.

 

[rvallee]

Yes, that does seem like the meat of it. Begs the question: How do you go about convincing them there is a sufficient risk of harms, and that patients apprehensions about the possibility are justified. The medics are so locked into their own beliefs, that their clinical experiences of what they perceive to be successes completely swamps in their minds the harms they never get to perceive.

It's an irrational position to begin with, it did not arise out of evidence. So rational arguments and evidence won't matter here. Seeing the complete failure of medicine dealing with Long Covid, how even this isn't enough to get through, I think it's important that we accept this and try a different approach.

The truth is simply irrelevant here, it conflicts with ideological beliefs and that never ends well, it follows the same pattern as other irrational beliefs: fighting only reinforces them. I don't know what that means for how to undo this mess, but it can't be undone by rational arguments or evidence. It just won't happen, there has been too much needless cruelty as the default, it's too big a failure to walk back.

I haven't myself but read some comments from people who went through recent physicians' discussion of Long Covid, it's basically universal dismissal, they are still stuck at the same stage they were with us. It's locked in place too firmly. There is no budging, at best a few hundred physicians, maybe a few thousands, really get it. That's it, the rest are firmly ignorant of what's going on and are too busy to bother unless it gets directed from above, which won't happen.

 

[Barry]

I think it's important that we accept this and try a different approach.

Yes. The question is what?

 

[rvallee]

Yes. The question is what?

I'm lost on this. We tried everything and have no other options, we have no real threats like the AIDS movement did with the blood supply, probably the only reason things eventually moved. Bodies were piling up and people still didn't care. It's indirect threats that did it, we don't have that.

I don't think we can make progress as long as psychosomatic ideology is held supreme, more important than literally millions of lives. So that's probably where most efforts should go: invalidating it. Everything else just keeps the poison stream at full strength, there's no cleaning that up.

So instead of researching evidence for us, with insufficient budgets, more efforts should be made to explicitly disprove the psychosomatic belief system. Or a balance of anyway, but most of the preliminary research has been done, the rest needs serious budgets and they aren't happening any time soon. And the charities have to be more confrontational, avoiding opposing people's beliefs has not worked out. It has led us nowhere slow.

Fighting ideas... ugh. It's basically like fighting the sea, except way slimier.

 

[DigitalDrifter]

1.11.11 Tell people about the risks and benefits of physical activity and exercise programmes. Explain that some people with ME/CFS have found that they can make their symptoms worse, for some people it makes no difference and others find them helpful.

I'm really concerned that they are including people without real ME. If exercise improved your condition then you have another illness, may be Fibromyalgia.

 

[Jonathan Edwards]

I'm really concerned that they are including people without real ME. If exercise improved your condition then you have another illness, may be Fibromyalgia.

I agree that this is confusing. However, it is difficult to fault if the implication is that an exercise programme might be:

If you feel you are much better and are just about to try running 5K because you used to do 15K every day then try 1K first and make sure you can handle it regularly before doing any more.

 

[SNT Gatchaman]

I don't think we can make progress as long as psychosomatic ideology is held supreme, more important than literally millions of lives. So that's probably where most efforts should go: invalidating it. Everything else just keeps the poison stream at full strength, there's no cleaning that up.

So instead of researching evidence for us, with insufficient budgets, more efforts should be made to explicitly disprove the psychosomatic belief system.

Not sure it is falsifiable. Seems to just be a religion.

I think success will occur when biomedical mechanisms are demonstrated to sufficient satisfaction. Psychogenic explanations as a god of the gaps, will finally shrink [hah!] away to the nothingness they always were. ('Oh dear,' says God, 'I hadn't thought of that,' and promptly vanishes in a puff of logic.' -- Douglas Adams)

There is undoubtedly an explanation (maybe 1+). That explanation will represent a paradigm shift in medicine, not least because untreated/untreatable diseases will now be ameliorable, but also by virtue of the fact that it has eluded our recognition and understanding for so long.

Fighting ideas... ugh. It's basically like fighting the sea, except way slimier.

Puts me in mind of Dietrich Bonhoeffer [YouTube link]. "Stupidity is a more dangerous enemy of the good than malice."

 

[Ariel]

You cannot disprove these "psychogenic"-type theories and claims, which the proponents know perfectly well. That likely attracts people to the area. They will continue to move goalposts and rewrite the past as long as they are given space in which to do so. They seem to know how to make themselves convenient enough to stick around. I doubt the truth of the claims or theories really matters in any case; it's a mechanism for them to amass various kinds of power and assert control.

There must be checks on their power, as I doubt you can stop the process once it gets going. If life was made more difficult a number of people likely wouldn't bother. Currently it's extremely easy, so you have a proliferation of all of it. I think the best you can do is to check and defuse their power wherever possible.

The current idea of "listening to patients" is something that many people agree with and it may be that people are developing an increasing awareness of the massive power imbalances at play. I see more chances to come at this indirectly rather than always by challenging the ideology itself, which can sometimes only serve to increase the power of its proponents. Of course, it must be challenged as well, but it may fall by the wayside given enough of a course correction in the overall power dynamics.

 

[TiredSam]

I'm sure this point has been made before, but didn't the BPS lot say that if GET didn't work, it was either the fault of the patient, or the therapist, for not doing it properly. Now apparently the patient and therapist colluding to work out their own version of GET is what they've been doing all along, and as it should be.

 

[Barry]

I think success will occur when biomedical mechanisms are demonstrated to sufficient satisfaction. Psychogenic explanations as a god of the gaps, will finally shrink [hah!] away to the nothingness they always were. ('Oh dear,' says God, 'I hadn't thought of that,' and promptly vanishes in a puff of logic.' -- Douglas Adams)

Puts me in mind of Stephen Hawkings' quote: "The greatest enemy of knowledge is not ignorance; it is the illusion of knowledge."

 

[Peter T]

Puts me in mind of Stephen Hawkings' quote: "The greatest enemy of knowledge is not ignorance; it is the illusion of knowledge."

Also partial knowledge, too many intoxicated scientists out there:

“A little learning is a dangerous thing;
drink deep, or taste not the Pierian spring:
there shallow draughts intoxicate the brain,
and drinking largely sobers us again.”

 

[Kalliope]

There were three articles about the NICE guidelines in a Danish journal about neurology December 9th. Psychologist Peter La Cour is supportive of the new guidelines, professor Per Fink is not. The articles mention the protests from the Royal College of Physicians.

Omstridt ME-behandling forkastet i nye NICE-anbefalinger
google translation Controversial ME treatment is rejected in new NICE recommendations

“We know that people with ME / CFS have had difficulty getting their disease recognized, and the guideline provides guidance for diagnosing the condition in recognition that there is no specific test for the disease. The recommendation emphasizes the importance of a personal management plan for, for example, energy management - including the importance of rest and stay within the individual energy limits, " says Peter Barry , clinical advisor to NICE and chairman of the committee behind the recommendations.

...

“The new guidelines from NICE put an end to the stigmatizing myths that ME is psychosomatic and that patients can be trained healthy. It is critical that we have a healthcare system that insists that ME is the same as general fatigue and functional disorder. NICE today confirms that ME is a separate, disabling and recognized biomedical disease, "says the chairman of the ME association Cathrine Engsig in a press release .

She hopes that the Danish healthcare system will follow in NICE's footsteps and update their guidelines in the area and recognize that ME is not a functional disorder.

...

The significance of the new changes in practice in England - if any - remains unknown after the English doctors' protest statement. Therefore, the final sentence in the case of the treatment of ME in England has not been set yet, nor does it seem to be the case here at home.

Sundhedspsykolog om nye NICE-anbefalinger: Kæmpestort for ME-patienter
google translation: Health Psychologist on New NICE Recommendations: Huge for ME Patients

“It is huge that NICE recognizes that ME is not a functional disorder and that treatment with graduated rehabilitation has now been completely removed because it can do more harm than good to patients. We have been waiting a long time for the recommendations, so it is extremely gratifying that they have finally been published, ”says Peter la Cour, who works with ME patients on a daily basis at a private clinic in Copenhagen.

...

“It gives hope that ME can get another disease term and no longer be termed a functional disorder. And this allows the health authorities in Denmark to draw up guidelines specific to ME / CFS, so that patients are not treated incorrectly or pushed around between different specialties. Hopefully, the decision in NICE can boost the process here at home in the National Board of Health, because they can not continue to sit with their hands in their laps, as they have done so far, "he says and refers to the fact that a unanimous Parliament in 2019 decided to separate ME / CFS from functional disorders.

A decision that was criticized by many doctors, who believed that the politicians interfered in their field, and where the National Board of Health has so far also avoided implementing the decision.


Professor: Foruroligende beslutning av NICE
google translation: Professor: Disturbing decision by NICE

“There are quite a few problematic things in the new recommendations where the definitions are not on par with reality. When we use graduated exercise therapy, we adapt it to the individual patient, so that we just avoid overloading the patients, and NICE does not take this into account in the recommendations, ”he says.

...

He doubts that the changes will actually be implemented in England due to the opposition from the medical profession, and therefore he also does not see that it will have an impact on ME treatment in Denmark.

“In Denmark, ME patients are primarily treated at the various centers for functional disorders, and it has worked and works quite well with excellent results, where we primarily use the evidence-based treatment methods such as GET and CBT. And therefore I see no reason to change it now, ”he says.

...

Per Fink emphasizes here the importance of health authorities making decisions based on a medical basis such as research studies that can demonstrate evidence for a given form of treatment. And here NICE has stepped outside the lines, as according to Per Fink they have ignored expert statements and selected in the research experiments they have included in the preparation of the guidelines, so that patient statements and selected ME experts associated with the ME environment's words have been weighted higher than research results.

ETA: Added an extra quote, the one from the Danish patient organisation.

 

[Jonathan Edwards]

I think it is a pity that even where there is helpful coverage of the NICE guideline it focuses on the issues of ideas recognition, possible harm and distancing from psychosomatic rather than on the EVIDENCE.

The reason the guideline is justified is based on the LACK OF EVIDENCE for effectiveness of GET and CBT, combined with a concern of possible harm. I find it puzzling that charities and sympathetic physicians are still harking on about issues that are so easy to dismiss when the BPS crowd claim that 'there is evidence'. Nobody is saying to the BPS people 'yeah, "evidence" like for homeopathy'.

 

[JohnTheJack]

I think it is a pity that even where there is helpful coverage of the NICE guideline it focuses on the issues of ideas recognition, possible harm and distancing from psychosomatic rather than on the EVIDENCE.

The reason the guideline is justified is based on the LACK OF EVIDENCE for effectiveness of GET and CBT, combined with a concern of possible harm. I find it puzzling that charities and sympathetic physicians are still harking on about issues that are so easy to dismiss when the BPS crowd claim that 'there is evidence'. Nobody is saying to the BPS people 'yeah, "evidence" like for homeopathy'.

Or indeed, as Crawley showed, if you use the same kind of trial design, the Lightning Process.

 

[Barry]

I'm intrigued by what the quality threshold is for 'evidence'. Low quality and very low quality 'evidence' is surely ... not evidence at all? If you think of evidence quality as being on a sliding scale, how low does it have to fall to not be deemed evidence at all? I'm talking here about genuine science by genuine scientists. Things are rarely perfect, 100% rarely achievable, so where is the threshold?

 

[Jonathan Edwards]

how low does it have to fall to not be deemed evidence at all?

Carolyn Wilshire and colleagues deal with this admirably. If the result is what you should have expected to get if the treatment does not work then it is too low to be evidence.

All this fancy GRADE stuff is irrelevant. All you need to do is ask if it passes this test.

The fact that GRADE is taken seriously indicates just how low the level of analysis is.

NICE have done well to get out a sensible guideline but we have to step back and ask why all these 'reasonable people' still think GRADE is something to use.

 

[Wonko]

But I thought it had been decided that 30 years of evidence of an approach not working, of it failing miserably, was considered evidence of such good quality, that anyone could see it should continue.

-100% evidence of successful treatment is still evidence, as those 2500 pages attempted to maintain, to those, who had looked at all the evidence but who still didn't understand this.

 

[Mithriel]

From the statements made by the colleges and the PACE trial manuals and so on it is obvious that the BPS believe that exercise will cause harms but that those harms are just the natural response as the body becomes fitter so their is agreement that patients will feel worse.

The "experts" assume that patients are exaggerating and adopting a sick role or whatever they want to call it so their position is unfalsifiable. To show that patients are suffering far beyond anything experienced by a healthy human taking up walking briskly a few times a week is seen as proof that there was never anything wrong with us apart from wanting the benefits of being sick. It is difficult to write a coherent sentence about all this because there is nothing coherent or anything you can pin down about what they believe.

It is simple prejudice with the same logic used in all situations where a group of people are chosen to be damned if they do, damned if they don't. Reason will never prevail against such thinking.

 

[Barry]

Reason will never prevail against such thinking.

Quite so. Reasoning with the unreasonable is always an uphill struggle.