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

Professor Karl Johan Tronstad has written an opinion piece for a Norwegian news site about research on why exercise make ME patients deteriorate. He mentions the NICE guideline, describes PEM and gives an overview of what research has uncovered so far about PEM.

Hva er årsaken til at trening gjør ME-pasienter sykere?
google translation: What is the reason why exercise makes ME patients sicker?

Quotes:
The goal of the GET method is for the ME patient to exercise for improvement by means of an escalation plan with gradually increasing exercise doses. This may at first glance look good, but the problem is that the GET method was established with a basic idea that the disease is due to reversible physiological changes as a result of lack of physical activity.

The US and British health authorities have thus found that this understanding of the disease is incompatible with recent research that points to chronic disease mechanisms.

...

Both the revised NICE recommendations for clinical follow-up, and the updated understanding of the disease they signal, must be considered as clear progress for the ME field. The Norwegian health authorities should also take note of this, and start a process to update and clarify the guidelines for the treatment of this patient group. Great research efforts are still required to understand more of the disease mechanisms behind ME.
 
Barry said:
Are you saying that that 40% still remain diagnosed with ME/CFS? Or that the clinics then recognise this and rediagnose?
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A paper by Julia Newton looked at all the patients at an ME clinic and found that 40% did not have ME but another disease some of which were treatable.

The figure comes from that. I can't remember it making any difference to the clinics though, they still continue to see patients without checking they actually have ME.
 
Mithriel said:
A paper by Julia Newton looked at all the patients at an ME clinic and found that 40% did not have ME but another disease some of which were treatable.

The figure comes from that. I can't remember it making any difference to the clinics though, they still continue to see patients without checking they actually have ME.
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That's the one. Thanks, Mithriel.
 
adambeyoncelowe said:
They probably thought they'd win in the end. But it's clinically risky for them to keep this out of date info on their websites, because it makes it easier for us to argue they aren't fit for purpose.

I think it will help us identify the intractable positions, so we can better engage with them (or the people above them who hold the purse strings) to get better services.

Evidence suggests about 40% of those referred to ME clinics don't have ME, so it is important that differential diagnosis is made. But you can get a referral earlier on (though there will still be a wait for any appointment).
There's always the risk malicious doctors will misdiagnose people. That's not unique to ME. But we have to write the guidelines assuming some degree of good faith.

Stakeholders were also very keen that we have a list of tests and exclusions. Even patient groups asked for this, so it wasn't just the clinics.

I think it would be untenable to argue that people shouldn't have a mental health assessment if they need it. The GL does suggest that testing and referral should be based on clinical history and presentation.
You wouldn't send someone for a test for which there are no indications that it's relevant. Especially not on the NHS, where there are pressures to keep costs down.
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Having an insight into the thinking of the guideline committee here it is easy for us to find out why some things were put into the final guideline but hearing what patients have said on other forums and reading the statements from the clinics and so on it is going to be possible to misinterpret.

Some patients are upset that exercise is still allowed and the clinics are changing the balance of what was really said. They are denying they use GET but talk about a management programme which puts the emphasis on what they have always done, GET and CBT by another name.

But you are right that if someone wants to gradually increase their endurance for sitting up it would be great if there was research and expertise to help them. If someone has anxiety and depression they should be able to access psychological help and support.

The question is if it will be possible to get these things based on an understanding of the true reality of ME or if the loopholes are big enough that the medical establishment will carry on as they have been with only a change of semantics
 
Mithriel said:
Having an insight into the thinking of the guideline committee here it is easy for us to find out why some things were put into the final guideline but hearing what patients have said on other forums and reading the statements from the clinics and so on it is going to be possible to misinterpret.

Some patients are upset that exercise is still allowed and the clinics are changing the balance of what was really said. They are denying they use GET but talk about a management programme which puts the emphasis on what they have always done, GET and CBT by another name.

But you are right that if someone wants to gradually increase their endurance for sitting up it would be great if there was research and expertise to help them. If someone has anxiety and depression they should be able to access psychological help and support.

The question is if it will be possible to get these things based on an understanding of the true reality of ME or if the loopholes are big enough that the medical establishment will carry on as they have been with only a change of semantics
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I think there will always be loopholes. I think we avoided the ones we could, but it wasn't possible to close all of them.

And we probably had to leave a few loopholes in to get what we wanted (though I think we got in a few loopholes of our own, so that in the long run, we can advocate for what we should be getting).
 
Mithriel said:
A paper by Julia Newton looked at all the patients at an ME clinic and found that 40% did not have ME but another disease some of which were treatable.

The figure comes from that. I can't remember it making any difference to the clinics though, they still continue to see patients without checking they actually have ME.
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A percentage at least of specialist ME/CFS services have no medical input and consequently no capacity to make or to correct a diagnosis.

Certainly the Sheffield Service I attended some years ago, insisted on a consultant diagnosis before they would accept a referral, and I could imagine that their intervention might not for many trigger any suggestion of any misdiagnosis.
 
Trial By Error: Some National Health Service Branches Fail to Respond to New NICE Guidelines for ME/CFS

"In late October, the UK’s National institute for Health and Care Excellence (NICE) released its new ME/CFS guideline, which specifically recommend against graded exercise therapy (GET) and a specialized form of cognitive behavior therapy (CBT). Last week, I wrote about how King’s College London continues to host a page on “CBT and chronic fatigue syndrome,” which boasted that “our researchers were among the architects of bespoke talking therapy for chronic fatigue syndrome, which is now one of two treatments recommended in the UK.” (This page is still live as of this writing.)

It seems some branches of the National Health Service around England have been similarly slow to react to the news. it is not clear how widespread this problem is, but someone should check out the sites of all the NHS trusts to assess if they have kept up with the changes."

https://www.virology.ws/2021/11/16/...to-respond-to-new-nice-guidelines-for-me-cfs/
 
Peter Trewhitt said:
What I suspect will be a harder problem to combat long term will be from well intentioned clinicians slipping into pacing up. It may prove that with clinician and patient both desperate for improvement that an initial improvement from better activity management through pacing and more rest will be mistaken as part of an ongoing recovery process. Unfortunately any such improvement is likely for most to be within an activity level ceiling, but that ceiling may not be hit until after the end of the time limited specialist service involvement.
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By far the hardest thing I had to do was accept the reality of both the disease itself, and the medical system and broader society not giving me the space to do that for many years.

I think this is going to be be the hardest part for most patients. There is no easy or nice or quick way around this. It is a shitty reality and nobody who has to face it is going to feel good about any of it.

Would be nice if the rest of the world didn't make it a whole lot harder than it needs to be. Hopefully we are now moving in that direction.

The rest of this post has been moved with the discussion to the thread linked in the next post.
 
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Good article about the revised NICE guideline in a Danish newspaper for medical news. The Danish ME Association is interviewed and says Denmark needs to catch up. The Danish Health Authority didn't reply when the journalist reached out to them for a statement for the article.

Dagens Medicin Patientforening: Danmark halter bagud på ME
google translation: Patient association: Denmark lags behind on ME

quote:
Denmark is unique in relation to this way of not seeing ME as an independent disease, which is done in countries around us. The National Board of Health has an outdated hypothesis that the condition can be trained away, even though the scientific literature over the past five years has pointed out that it can definitely be harmful to patients. Both WHO and now also NICE unanimously say that ME must be recognized as a separate disease, but in Denmark they continue to misdiagnose and mistreat patients, "she says.
 
Midnattsol said:
Live Landmark has an opinion
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aQeERwoG_700w_0.jpg

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Midnattsol said:
Live Landmark has an opinion piece at forskning.no, again arguing that the new guidelines are not fit for purpose and should be ignored, and throwing in some patient bashing for good measure... she even cites the PACE trial to prove her point that pacing has no evidence base.

Den britiske ME-veilederen er et resultat av aktivisme, ikke forskning
The UK ME Guide is the result of activism, not research
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While it would be better if she couldn't get publicity like this, it also shows how concerned she is about it and that is good to see. It also helps to raise the awareness of the changes in the guideline.
 
Landmark's article was published on Forkersonen which is "forskning.no's site for debate and popular science". (deepl translate)

According to wikipedia forskning.no "has an average of 33,000 visits per day in January 2016 and 1 million visits per month."

Also:

"forskning.no (science and research) is an Oslo-based online newspaper established by the Research Council of Norway in 2002. It publishes news about science and research from Norway and abroad. The web site is run by Foreningen for drift av forskning.no, a non-profit organization which has 78 research institutions as members. forskning.no has its own writers and journalists and freelance writers. In addition articles are submitted by the research institutes and then edited by forskning.no staff before being published."

https://en.wikipedia.org/wiki/Forskning.no
 
Andy said:
While it would be better if she couldn't get publicity like this, it also shows how concerned she is about it and that is good to see. It also helps to raise the awareness of the changes in the guideline.
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I agree. Better that she is doing this in public view rather than behind the scenes. Gives one an opportunity to clear up misunderstandings/misrepresentations of facts and so on.
 
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