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

Espolin Johnson, one of the "24 progessionals" who wrote in Aftenposten in defense of the BPS view when faced with the new guideline, and who has called ME a "fashionable illness" and said pwME can become healthy by "caring less", "changing partners" and "moving" has written a short opinion piece in Aftenposten today. It is a response to opinion pieces that have been posted here already that have been supportive of the guideline.

Espolin Johnson said:
I have neither fought against biomedical research nor rejected the actual content of the UK guidelines on CFS / ME, but that is not the issue.

The theme is what scientific basis the understanding of CFS / ME should be based on. When I, together with 23 other professionals, question the basis of the British guidelines and at the same time point out that there has also been a strong professional dispute in the UK, it is an expression that professional status is unclear and that the British guidelines do not represent conclusions.

I and many with me believe that we have a solid professional basis for maintaining that psychology is an integral part of our physiology, and therefore can contribute to the development and maintenance of CFS / ME. I do not know of any scientific literature that refutes this, and therefore it is essential to continue research in this track as well.
The path to knowledge goes through doubt, curiosity, openness and research, not through prejudice, dogma, rejection and characteristics of people with other views.

Georg Espolin Johnson, physician and historian of ideas
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My bolding. :confused:

Can be found here in Norwegian.
 
I do not know of any scientific literature that refutes this, and therefore it is essential to continue research in this track as well.
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Aside from the fact that there is plenty, this is literally one of the most famous logical fallacies. Although of course the fact that it's false makes it even worse.

It's getting seriously hard to keep any hope seeing how so many people are dedicated to making sure we stay in this dystopian nightmare. Their success is our failure and they have zero incentives to change anything. It's always worse in context and there's been a whole lot of context added recently and it all follows the pattern of showing how things are so much worse than can ever be justified.
 
I and many with me believe that we have a solid professional basis for maintaining that psychology is an integral part of our physiology, and therefore can contribute to the development and maintenance of CFS / ME. I do not know of any scientific literature that refutes this, and therefore it is essential to continue research in this track as well.
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Oh dear this silly wee besom has got this all back to front.

I and many with me believe that we have a solid professional basis for maintaining that psychology is an integral part of our physiology, and therefore can contribute to the development and maintenance of CFS / ME.
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So as the proponents of the claim they cannot provide any evidence or scientific proof to back it up, just belief and their "solid professional basis".

I do not know of any scientific literature that refutes this, and therefore it is essential to continue research in this track as well.
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They (not others of which there are many) don't know of any scientists who can refute their belief so they should be allowed to continue to research using the academic speciality of belief.
 
Jonathan Edwards said:
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'.
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I don’t know the of details the exact conflicts of motivation behind large ME charities. I expect these are many a twist and turn.

The broader context seems relevant.

No matter how hard many individuals within these charities may work, or how well intentioned this work may be, it is not evident that the overall direction of the project is actually helpful, to people with ME.

Maybe charities are not aiming for clear effective communications and commitment to rapid radical change in terms of medical and social care for people with ME.

Or charities are aiming for our liberation. Yet are unsuited to the task and incompetent in this domain.

Either way. We would have to remove them from their (self?) appointed position of representing our interests and opposing our oppression. Since they are not doing so, effectively.

I guess the problem is they wish to oppose, but without actually opposing.

If charities were to point to hard evidence?

Rather than general pleas for support and reliance on the personal testimony of politically naïve and cognitively impaired patients asking for ‘kindness’ to ‘raise awareness’?

Then these charities would become a threat to the establishment. Would as a result likely lose access privileges that are currently freely offered to them. This might extend to cutting them off entirely.

They would in all likelihood face a rapid escalation of the same type of false accusations and relentless derogatory coverage that patients themselves have been treated to.

No matter all this. These Charities remain responsible for their failure to stand with us and defend the only solid ground we have.

To fail to utilise the evidence that ours, is to delay our access to life saving resources.

To decline to pick up the tool that could liberate us is to make a decision to leave us stranded a little longer.

Such avoidance only becomes a strategic or practical mistake if the overriding aim is to work for people with ME and get us to safer ground as a matter of urgency.

If this is an aim, rather than the aim? The door is open for a divided purpose. They may be attempting to accomplish at least two projects at once.

Perhaps charities believe in earnest that they may balance and reconcile this two aims. When in reality these aims are incompatible?

Is one aim, to get help to people with ME? Yet is there explicit or tacit agreement that this can only be done without losing organisational esteem and privilege within the establishment. In which case of course this would come first as the primary aim.

A situation where ME suffers -along with all other groups with charity representatives-are often left waiting expectantly for organisational back up that will not come.

Marginal democratic involvement in the charity model. They stand up for us, if we are lucky. They do not stand with us.

To avoid further disempowerment we require our own democratic organisation that we may decide and direct. For ourselves.
 
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I'm stating the obvious here, and am probably reiterating what Ash has said above....

If ME charities and patients use the battlefields picked by the BPS crew they aren't going to get very far. If a BPS therapist or doctor says they have evidence that GET works - and they know this because of their "clinical experience" - then quote back to them published evidence and research and anecdotes showing that it harms people, and point out the reviews (from patients and non-BPS doctors and therapists) of the BPS papers and how poor they are. We can be repetitive too.
 
Midnattsol said:
Aftenposten continue their ME-debate on the new NICE guidelines, this time with an opinion piece from Recovery Norway with the usual babble about activism, recovered patients not being listened to, misinterpretations of the evidence, it is dangerous to take away hope etc...

Ikke ta fra ME syke håp. Dette er alvorlig og farlig
Do not take from ME patients the possibility of treatment that works

Huh... when I added it to google translate the title was changed, and now it is changed in the Norwegian version as well. The original name translates to "Don't take away hope from ME patients. That is is serious and dangerous".
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A great answer today from ME patients saying that the NICE guidelines gives them hope. They don't find it right that Recovery Norge with their 260 members should raise themselves above biomedical research, health authorities from other countries and the Norwegian ME Association's near 6 000 members. There are no evidence based treatment for ME, and we need to stop treatments that make patients deteriorate. The opinion piece is signed by 235 people.

NICE gir oss håp!
google translation: Nice gives up hope! (2. headline)
 
Tony said:
So as the proponents of the claim they cannot provide any evidence or scientific proof to back it up, just belief and their "solid professional basis".
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Honestly it's become annoying how common it ends up like this, straight up admitting that it's just their belief. Wessely said the same a few weeks ago. They plainly admit it, the people claiming we have beliefs are even admitting that those are nothing but their beliefs.

And it doesn't make a damn difference. It can be freely admitted that there is not a single bit of evidence and it doesn't matter. It's as amazing as the PACE authors plainly admitting they cheated because they prefer the results of cheating and nothing happened. It's maddening, the truth is entirely irrelevant, it can be said out loud, and it just keeps plowing through us anyway. What's a proper dystopian nightmare without complete disregard for the truth?
 
I don’t go on social media much. So I don’t really know the effects of the new NICE guidelines. Has much changed? Are clinics (or GPs) now seeing severe ME patients more than before? And providing home visits and personalised care plans and support with aids etc. Are people being treated better in hospitals (provided with sensory related help for example), if they say they have ME, for outpatients / inpatients? Are the clinics no longer pushing GET (although I remember seeing some reports that some clinics are still doing GET - is this common)?

it’s been nearly 2 months since publication (I think), so I was wondering have people observed any changes yet?

(sorry if this has come up earlier on this or other threads. I haven’t been able to read all the threads).
 
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lunarainbows said:
I don’t go on social media much. So I don’t really know the effects of the new NICE guidelines. Has much changed?
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Should we start a new thread on changes, not only regarding actual encounters with health care practitioners but also changes to the better on website content?

I'm on occasionally-lurking modus currently but spotted at least that one:

Hutan said:
A tiny tiny win, but still. It's due to the NICE Guidelines
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(A Pilates-for-CFS video taken down from the NHS UK website.)
 
More pushback from Scandinavia. This time in a Danish medical newspaper interviewing Marianne Rosendal, senior researcher, specialist in general medicine at the Department of Functional Disorders at Aarhus University Hospital and front person for the Danish Society for Functional Disorders.

Quotes:

"I certainly do not think we are doing everything wrong, as it may sound, if you read the new NICE guidelines or the criticism from the ME association. In my view, it is inappropriate to categorize ME patients as incurable because it creates confusion when NICE comes up with such bombastic announcements. At the same time, in clinical practice we can see that we can treat a large group of patients with functional disorder and patients with ME, often with very good results, "she says.

...

Marianne Rosendal fully agrees that the health policy side has decided that ME should not be categorized as a functional disorder.

That said, she also points out that many patients with ME have symptoms that are completely aligned with those that patients with functional disorder also have. Therefore, she is of the opinion that the treatment far down the road may be the same.

According to Marianne Rosendal, the new guidelines from NICE point to the example that the extreme form of fatigue after exertion (PEM) is separate for ME, but she does not agree with that. It is also found in functional disorders and is treated with slow and individually tailored rehabilitation to be able to do more and more physical things.

...

Marianne Rosendal is also very critical of the recommendations that NICE makes in relation to the most seriously ill patients.

Here, NICE recommends that in some cases, people be isolated in a dark room without sounds or other stimuli.

'There is a danger of that. Removing all stimuli also affects people's nervous system. On the other hand, our experience is that with the slow and gradual stimulation, which is adapted to the individual patient, the function of the nervous system can be improved. This type of treatment must of course be adapted to the individual patient, "says Marianne Rosendal.

...

In Denmark, many patients also express that they are happy with the treatment they receive at the treatment centers for functional disorders. This also applies to patients with severe fatigue. They do not want the treatment option to be taken from them, she says.


Forperson for selskab for funktionelle lidelser er uenig i ME-guidelines fra NICE
google translation: The person in charge of the company for functional disorders disagree with ME guidelines from NICE
 
One of the biggest impact I am seeing, and ironically I don't think anyone even knows the origin, is the widespread adoption of PESE over PEM. Pretty much the very thing that got BPS ideologues foaming at the mouth because of how wrong it was according to their belief system. Not much else is happening as a result of the guidelines so far, but this is happening, it's one of the ways it will change things.

This is from a paper published by Australian physical therapists. Ironic that I haven't seen anything published about ME referring to PESE. So not only was PEM "formally" recognized for LC before ME, the same happened with PESE. You gotta laugh about it. Then cry a bit. Then maybe laugh-cry some more. Then turn the cynicism wheel a bit further, it can take it.

 
ME/CFS – Top 5 learning points from the new NICE guideline | NB Medical
The guideline is now significantly different from the previous 2007 version, which recommended that CBT and also graded exercise therapy (GET) should be offered to people with CFS. Previous research, for example, the PACE Trial, had suggested that these strategies can improve patient outcomes. However, patient groups with ME/CFS have lobbied for years to have this recommendation changed, based on patient experience that exercise can worsen symptoms. They have welcomed the new guideline which now recommends providing individualised support to patients tailored to patient-set targets. The role of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) has been significantly downplayed in the new guidance, which many object to as seemingly at odds with the evidence including the PACE trial. However, both can still be offered should the patient wish it but if exercise programmes are offered they should be based around patient-set targets 'within current energy limits' rather than trying to push those limits.
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NHS primary care teams will struggle to get the timely, multi-disciplinary specialist support that their patient needs and the guideline recommends. However, although specialist support is limited the guidance is still useful for us in primary care to help improve our understanding of the condition, its management, and the advice we give our patients. So, we have been through the guideline for you and will develop a KISS summary for our new Hot Topics GP Update course in March. In the meantime, here are our Top 5 learning points from the guideline:

  • Acknowledging the reality of living with ME/CFS is the essential first step to create an effective therapeutic relationship; the guideline acknowledges that many patients will have experienced prejudice, disbelief and felt stigmatised by health professionals and trust needs to be built to make meaningful progress
  • The diagnostic criteria have changed, and the diagnosis is now made if patients have the core symptoms of ME/CFS (debilitating fatigue made worse by activity, post-exertional malaise, sleep disturbance and ‘brain fog’ cognitive difficulties) that are not explained by another condition, that have a significant effect on function and have persisted for a minimum of 3 months (rather than the previous 6 months)
  • Early and accurate diagnosis is encouraged, so that patients can be sign-posted to appropriate self-help and referred to specialist services if available
  • Be aware that many additional symptoms may be associated with ME/CFS e.g. autonomic dysfunction such as orthostatic hypotension, sensory hyper-sensitivity, allodynia, chronic pain and intolerance to medications
  • Do not tell people to exercise more than they feel comfortable doing. Give people personalised advice about symptom management and advise them to manage their daily activity within their limits and not 'push through', to rest as needed and to maintain a healthy balanced diet. Do not advise people with ME/CFS to blindly exercise (e.g. to go to the gym) that is not part of a programme overseen by a ME/CFS specialist team
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https://www.nbmedical.com/blog/mecfs-top-5-learning-points-from-the-new-nice-guideline
 
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