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

Kalliope said:
Fantastic opinion piece in the Norwegian newspaper Aftenposten by the professors Ola Didrik Saugstad and Rolf Rønning.

They start with sharing the news about the NICE guideline, and then provide some history (as Wessely, the psychosomatic approach), present research into ME, how ME patients have been mistreated (with emphasis on the children), and the importance of listening to patients and to take action to prevent more abuse towards the patients.

I hope the google translation is readable, because this was well worth a read!

ME-pasientene fikk rett!
google translation: ME patients were right!

Quote:
The report is a complete victory for ME patients' organizations and the professionals who have supported them. This should put an end to one of the biggest health policy and medical issues of our time.
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And now Lightning Process coach Live Landmark is also weighing in in the debate about the NICE guideline.. It's in the same newspaper as the other opinion pieces about same topic.

Helsedirektoratet må tåle presset fra ME-pasienter
google translation: The Norwegian Directorate of Health must withstand the pressure from ME patients

When creating guidelines, it is common to put together a professionally competent group. Nice set up a committee of 21 people, a third of whom were ME patients, relatives or from ME forums and ME associations. The rest had a personal commitment. Guidelines must be based on the best possible scientific basis, however, key researchers with relevant expertise were not invited.

...
Nevertheless, the members of the committee chose to agree on new diagnostic criteria. They then used these as a basis when evaluating previous studies. The consequence was that all previous studies were downgraded using the Grade scientific method system .
Since most studies evaluating the effect of cognitive therapy (CBT) and graded exercise (GET) have been performed on patients who met other diagnostic criteria, these studies were graded to be of "low" or "very low" quality.

And suddenly there were no studies of "good" quality.

...

A natural consequence would be to say that there is no scientific basis for creating guidelines for ME. Instead, the members of Nice chose "to listen to the patients".

That is, they used qualitative studies and the ME associations' online user surveys to create guidelines. But then they completely ignored all diagnostic criteria. The result was "experiences" from patients who may not even meet any diagnostic criteria, because they have diagnosed themselves with ME.

It is these experiences, along with the members' personal opinions, that make Nice move away from Cognitive Behavioral Therapy (CBT) and do not recommend either Graded Training (GET) or Lightning Process (LP).
 
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The Danish local newspaper Ugeavisen Esbjerg has covered ME (particularly severe ME) many times, and has now interviewed the parents of a severely ill woman about the NICE guideline and its implication for ME patients in Denmark.

ME-familie: Det kan forandre alt
google translation: It can change everything

quotes:

- Had the new guidelines from NICE been in force in Denmark a few years ago, many of the abuses our daughter has been exposed to could have been avoided, but it is gratifying that many other patients can now be spared the same abuses. We hope that all the recommendations from NICE will be implemented in Denmark without hesitation. They are ready to lead into life. This will mean a colossal improvement for ME patients and their relatives, say Vibeke and Esben Ilsøe Gustavussen.
...

- In Denmark, as Nice now dictates, it is necessary to recognize that in the treatment of the ME patient, be it both in the care and treatment of the patients, permanent damage can be done. It happened to our daughter Marie Louise. And it happens daily in the patients' meeting with the hospitals, the general practitioners, at the on-call doctor, in the job center and in the municipalities. But now there is hope for change. The new guidelines from NICE can change everything for ME patients and their relatives, says Esben Ilsøe Gustavussen.
 
Thanks Ms Landmark, it is always useful to have further evidence of your lack of understanding of science. It may be useful for my book too.
Interesting how remarkably similar to some comments from Royal Colleges these are.

Whose voice do I keep seeming to hear in the background here? Someone in a prominent public position who believes that alternative facts are always a good way to counter real facts?
 
Arnie Pye said:
Is there someone in the background orchestrating all this? It is clear that people are trying to "disappear" the new ME guideline as fast as they possibly can.
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It is usually the other way around, with the BPS'ers setting the agenda with all kinds of strange stuff. This time it was the professors Saugstad and Rønning who started the debate with a great opinion piece, and now the BPS'ers for once, are the ones who must try to put out the fire.
 
Jonathan Edwards said:
Thanks Ms Landmark, it is always useful to have further evidence of your lack of understanding of science. It may be useful for my book too.
Interesting how remarkably similar to some comments from Royal Colleges these are.

Whose voice do I keep seeming to hear in the background here? Someone in a prominent public position who believes that alternative facts are always a good way to counter real facts?
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Someone with a nautical bent and tenancy to analogy? Someone warm, humorous with a string of noble titles..... in the family?
 
Another opinion piece on the Norwegian site forskning.no Some good parts, but continously describes ME as a fatigue condition, and PEM is framed as "post exertional fatigue".

Ny ME-veileder innebærer en kursendring i behandlingen av kroniske utmattelses-tilstander
New ME guide involves a change of course in the treatment of chronic fatigue conditions

Some quotes:

On diagnostic criteria said:
There are many different diagnostic criteria for these conditions, but most assume that these are conditions that involve a prolonged, significant and sometimes disabling exhaustion, which is accompanied by various additional symptoms. Exhaustion worsens after any kind of energy use. In the new guide from NICE, they use four main criteria:

1. significant fatigue

2. activity-triggered exhaustion

3. sleep problems

4. cognitive difficulties"

The guide does not make a significant distinction between various conditions of fatigue such as ME, chronic fatigue syndrome and postviral fatigue syndrome, which are adjacent diagnostic codes in the diagnostic manual of the World Health Organization .
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I wish people would not argue CFS is not ME when we know these terms are used interchangeably many (most?) places.

On neurasthenia and gender said:
In many of the first medical descriptions of prolonged fatigue and energy failure, this was referred to as neurasthenia, and described as a neurological physical (somatic) disorder.

In leading medical publications, for example, George M. Beard (in 1881) described neurasthenia as "a physical and not mental condition", and in 1902 Gilbert Ballet described this as "a somatic disease of the nervous system that can be contrasted with hysteria, which is a psychiatric disease". Both, and several others, described the disease as something that primarily affected men in higher social strata, and the causes of the disease were largely attributed to societal changes (modern civilization).

...
Towards the end of the 1920s, states of exhaustion were largely redefined from physical to mental illness. At the same time, the causal explanations moved in the direction of individual coping ability (or lack thereof). Hilde Bondevik and I have previously described this as an « etiological u-turn ». At the same time as the etiology, ie the theories about the causes of the diseases, went in the direction of psychological explanatory factors, the condition also changed name (from neurasthenia to ME / CFS) and "gender" (from man to woman).

In short: The "male" diagnosis of neurasthenia, which was first explained on the basis of social conditions, was transformed into the "female" diagnosis ME, and explained on the basis of lack of individual coping skills.
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On lack of biomarkers said:
Lack of findings of a biological disease marker can be interpreted in many different ways. For example, it can be interpreted as meaning that the disease does not have a specific and limited biological marker, or that we have so far not been able to identify it. In any case, there is no reason to believe that the development of medical knowledge has reached a perfect stage.

If we interpret the lack of findings of biomarkers as an indication that the disease should be considered a mental disorder, or perhaps even that it is non-existent, then we are on a wild goose chase. Perhaps this is where the most important germ of the heated debate about states of exhaustion lies buried?
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Then there is this gem, which should also have been stated as part of the problem when it comes to ME/CFS if you ask me:
"In the way forward, we should strive for increased confidence in and recognition of the sources of knowledge that are easily overlooked in modern biomedicine: physicians' practice-based clinical knowledge, and the experience-based knowledge that patients themselves possess."

Some clinician's (and non-clinician's) "knowledge" have been placed in too high esteem.
 
The clinics are allowed to offer physical activity and exercise programmes but not GET, which only makes fixed incremental increases in the time spent being physically active. I think they can still provide GET when the approach is patient-centred, flexible and gradually increases the time spent being physically active once a stable baseline has been established. The guideline says not to offer graded exercise therapy and then clarifies which type they are not recommending. Whether they can or not still call ME exercise/activity programmes GET seems a bit open to loose interpretation.


*Edited: for clarification*
 
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livinglighter said:
The clinics are allowed to offer physical activity and exercise programmes but not GET, which only makes fixed incremental increases in the time spent being physically active. I think they can still provide GET when the approach is patient-centred, flexible and gradually increases the time spent being physically active once a stable baseline has been established. The guideline says not to offer graded exercise therapy and then clarifies which type they are not recommending. Whether they can or not still call ME exercise/activity programmes GET seems a bit open to loose interpretation.


*Edited: for clarification*
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If flexible activity/exercise programmes are allowed to be called GET, which the clinics offer to PWME, technically, they are providing NICE recommended GET as it’s the approach recommended.

If the above is correct, it seems problematic as most people associate the term GET with the version used in the PACE trial. I'm wondering if it could also confuse ongoing evidence presentation, just like during the guideline development process when it was suddenly announced that the clinical GET evidence was not the same approach used in the PACE trial?

Plus, it currently looks like some clinics offer therapy programs to people with fatigue caused by various conditions, and some are using the Fukuda diagnostic criteria. Based on an operation like that, it seems possible there will be people who don't have ME/CFS being recorded amongst people who do within their research but are able to withstand more upward increments in exercise/activity.

https://www.cpft.nhs.uk/download.cfm?doc=docm93jijm4n944.doc&ver=1259

https://www.elft.nhs.uk/service/419/Bedfordshire-Chronic-Fatigue-Service#:~:text=How to-,refer,-We only take
 
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livinglighter said:
The clinics are allowed to offer physical activity and exercise programmes but not GET, which only makes fixed incremental increases in the time spent being physically active. I think they can still provide GET when the approach is patient-centred, flexible and gradually increases the time spent being physically active once a stable baseline has been established. The guideline says not to offer graded exercise therapy and then clarifies which type they are not recommending. Whether they can or not still call ME exercise/activity programmes GET seems a bit open to loose interpretation.
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This isn't quite correct. They can offer physical activity and exercise programs if patients want them within the constraint that patients stay within their activity limits. This should place strict limits on any advice to gradually increase activity for anyone who has ME/CFS as defined in the guideline, as it's made clear that if there's a flare up of symptoms or PEM, patients need to cut back activity until they have returned to their previous level.
 
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