Status of CFS/ME (2019) Brinth et al Danish Medical Journal (Ugeskriftet.dk)

[Kalliope]

Moderator note: new thread with posts from here
https://www.s4me.info/threads/news-from-scandinavia.647/page-34#post-175962


Danish Medical Journal (Ugeskriftet.dk) has published an article about the status of CFS/ME. It's good to see references to Wilshire et al and Twisk et al, but the authors still suggests that a subset of ME-patients might benefit from GET. They also define ME as a functional disorder..

The recommended treatment modalities for patients with ME / CFS have been centered on graded training and cognitive behavioral therapy. In recent years, the utility of the graded exercise in the treatment of ME / CFS has been questioned.This partly based on the increasing recognition of the metabolic disorders of ME / CFS, and partly based on a critical review of the clinical studies that lay the basis of these forms of treatment [24, 25].

A key issue and basis for great disagreement with the approach to patients is whether we should "spare" or "push" them.We do not have a definitive answer, but suggest that much of the disagreement is based on the fact that a subset of this poorly-defined patient group will benefit from being "pushed" into graded training and cognitive therapy while at the other end of the spectrum will be patients who, at the cellular level, will be harmed by training and therefore must be "spared" [25, 26]. In both groups, symptomatic treatment can be attempted in close collaboration with the patient, where sleep problems, orthostatic intolerance, pain and other key symptoms can be handled carefully according to current guidelines.

It is stated that there is currently no evidence-based treatment modalities aimed at the basic disease process in ME / CFS, as this is not known.

Myalgisk encefalomyelitis eller kronisk træthedssyndrom
google translation: Myalgic encephalomyelitis or chronic fatigue syndrome

Summary:

Louise Brinth, Henrik Nielsen, Kim Varming, Susanne E Boonen, AC Gonzalez Ebsen, Paula Fernández-Guerra, Anne Sophie Schou, Jesper Mehlsen, Niels Gregersen, Ivan Brandslund & Rikke Katrine Jentoft Olsen:

Myalgic encephalomyelitis or chronic fatigue syndrome

Ugeskr Læger 2019;181:V08180570

In this review, we discuss the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is characterised by extreme mental and physical fatigue with associated symptoms of pain, disturbed sleep, cognitive and autonomic dysfunction, as well as post-exertional malaise. This condition is often preceded by an infection, severe physiological and/or psychological strain. Over the last decades, research has demonstrated mitochondrial, neuroendocrine, immunological, and metabolic perturbations in patients with ME/CFS, giving hope for the development of new biomarkers and new treatment modalities.

 

[Jonathan Edwards]

We do not have a definitive answer, but suggest that much of the disagreement is based on the fact that a subset of this poorly-defined patient group will benefit from being "pushed" into graded training and cognitive therapy while at the other end of the spectrum will be patients who, at the cellular level, will be harmed by training and therefore must be "spared" [25, 26].

They miss the crucial point that there is no fact of a subset that benefits from this and a subset that benefits from that. That is to say they do not understand basing treatment on reliable evidence. I strongly suspect that the authors see themselves as a 'multidisciplinary team'.

What they really meant was 'We do not have any evidence, but suggest that much...

 

[Rick Sanchez]

They miss the crucial point that there is no fact of a subset that benefits from this and a subset that benefits from that. That is to say they do not understand basing treatment on reliable evidence. I strongly suspect that the authors see themselves as a 'multidisciplinary team'.

What they really meant was 'We do not have any evidence, but suggest that much...

Sadly it's a common misconception in the Scandinavian ME/CFS debate.

There is no need to compromise. The burden of proof is on the authors of PACE. The study used the broadest criteria and couldn't even show reliable evidence of improvement among patients.

It's time to make up with the idea that some patients can benefit from CBT and GET once and for all.

 

[rvallee]

In recent years, the utility of the graded exercise in the treatment of ME / CFS has been questioned

Ah, yes, sure. In "recent years". The very recent time of... 30 years ago, aka from the start, since it's based on an alternative fictitious model that contradicts the lived experience of ME patients.

The 19th century, yesterday, what's the difference? Why bother researching things?

 

[Amw66]

Sadly it's a common misconception in the Scandinavian ME/CFS debate.

There is no need to compromise. The burden of proof is on the authors of PACE. The study used the broadest criteria and couldn't even show reliable evidence of improvement among patients.

It's time to make up with the idea that some patients can benefit from CBT and GET once and for all.

Subsets would only be relevent if they could be identified pre exercise.

It never ceases to amaze me that If the starting point is to " first do no harm" , if you cannot identify who will be harmed, how is any " treatment" ethical.
This is not a bit of extra muscle ache!

 

[Sean]

There is no need to compromise. The burden of proof is on the authors of PACE. The study used the broadest criteria and couldn't even show reliable evidence of improvement among patients.

It's time to make up with the idea that some patients can benefit from CBT and GET once and for all.

Especially the type of CBT and GET they are 'offering'.

Subsets would only be relevant if they could be identified pre exercise.

Exactly. If they can't predict responders from non-responders then they have no understanding at all, and are just taking random potshots and hoping something hits whatever target they think they are aiming at.

 

[Ravn]

Danish Medical Journal (Ugeskriftet.dk) has published an article about the status of CFS/ME. It's good to see references to Wilshire et al and Twisk et al, but the authors still suggests that a subset of ME-patients might benefit from GET. They also define ME as a functional disorder.

In the Danish context this is actually an excellent piece. It gives a good overview of all the recent biomedical findings. Functional Disorders are primarily mentioned because that's where ME/CFS has been placed by the health authorities in Denmark; the article then lists all the counterarguments though it diplomatically stops short of a definite conclusion.

The main issue with the article is with the treatment section where they suggest that a subgroup may benefit from GET whereas another subgroup may suffer harm. That statement is probably a result of misdiagnosis in Denmark. The authors mention that a 2017 survey showed 1% of the Danish population has a CFS diagnosis which is suspiciously high and makes me suspect that many patients in that group do not suffer from PEM - which is bound to lead to many doctors experiencing that their "CFS" patients improve with exercise (because they never had ME in the first place). The authors don't say that but they do conclude that other than general symptomatic treatments (sleep, pain, OI) there is no evidence-based treatment for ME/CFS; they don't push neither GET nor CBT. It's an opportunity missed though. They could at least have stated that the "subgroup" with PEM (out of the 1% with "CFS") should not be given GET.

My impression is that (most of) the authors hold biomedical views but had to include a few off-notes due to the context around ME in Denmark - it is a review article - and possibly to be seen as sufficiently "balanced" to be published. Maybe. Speculating.

 

[Sean]

One of the several steps in a typical back down by authorities is some version of:

'Well, we were partly right.'

 

[Andy]

Merged thread

Only abstract available at the moment.

In this review, we discuss the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is characterised by extreme mental and physical fatigue with associated symptoms of pain, disturbed sleep, cognitive and autonomic dysfunction, as well as post-exertional malaise. This con-dition is often preceded by an infection, severe physiological and/or psychological strain. Over the last decades, research has demonstrated mitochondrial, neuroendocrine, immuno-logical, and metabolic perturbations in patients with ME/CFS, giving hope for the development of new biomarkers and new treatment modalities.

https://www.ncbi.nlm.nih.gov/pubmed/31267953

 

[Kalliope]

The article discussed in this thread was re-published in the latest edition of The Danish Medical Journal (Ugeskriftet).

This edition also has a "Scientific editorial" commenting on the article by Andreas Schröder from Department of Clinical Medicine - Research clinic for Functional Disorders in Aarhus, Denmark.

He writes about "tiredness" and says science is far away from being able to define sub groups of primary chronic fatigue as specific, well defined illnesses, and that it is irresponsible to raise doubts about the few evidence based treatments that helps the patient group.

He says the article points to several studies finding mitochondrial, neuroendocrine, immunological and metabolic influences in patients with ME/CFS, but that the article also admits it's unclear whether this is primary pathology or consequences. He says that if it is consequences, partly due to how patients are handling their symptoms, it is crucial to avert them with "activating treatments" as graded exercise therapy and cognitive behaviour therapy.

If the authors on the other hand are correct in their hypothesis that there are patients who "on a cellular level will be harmed by exercise", a much more gentle, non-activating symptom treatment would be appropriate. Such a "passive" symptom treatment, which more or less equals the tiredness subjectively experienced by the patient with the assumed cellular or mitochondrial damages, is recommended by some researchers and many patient organisations world wide, as he puts it.

In some cases the chronic primarily tiredness, neglected and homeless as it is, becomes belligerent. Both carers and patients can be seen as "difficult" and mistrustful by health care personell, and one can meet patients repelling the very people who has the knowledge and will to help.

He presents the idea of the need for an International Association for the Study of Fatigue.

He ends the text by saying that one of the most important things is to listen to patients, and then links to Recovery Norge (a "patient" organisation for people who have improved with undocumented treatments, as Lightning Process) for personal stories from people who "have recovered from chronic fatigue syndrome".

Among the references are the Kate Kielland-article and Larun's Cochrane review on GET.

Ugeskriftet: Primær træthed - hjemløs, forsømt og krigersk
google translation: Primary fatigue - homeless, neglected and belligerent

 

[Kalliope]

He ends the text by saying that one of the most important things is to listen to patients, and then links to Recovery Norge (a "patient" organisation for people who have improved with undocumented treatments, as Lightning Process) for personal stories from people who "have recovered from chronic fatigue syndrome".

If Andreas Schröder thinks it's so important to listen to patients that he links to a patient organisation from neighbour country Norway with their 200 members, why not the Norwegian ME Association and its 5 000 members?

 

[Esther12]

If Andreas Schröder thinks it's so important to listen to patients that he links to a patient organisation from neighbour country Norway with their 200 members, why not the Norwegian ME Association and its 5 000 members?

He seems uninterested in genuinely listening to patients, rather than trying to smear those he doesn't like and use those who tell him what he wants to hear. I'm so sick of propagandists like him.

On PACE:

"Of course, the study is lacking, but as far as I can see, it is still the best thing done in the area," said Andreas Schröder from the Danish Research Clinic for Functional Disorders in a case from April this year .

https://forskning.no/me-medisin-sykdommer/hard-kritikk-av-stor-me-studie/330976#

Andreas Schröder from the Functional Disorders Research Clinic nevertheless maintains that the conclusions of the PACE study hold water.

- The debate has been going on for years, led by some very committed ME patient associations. I have heard the criticism, but I still have confidence in the conclusions. There is peer-reviewed research published in The Lancet, which is one of the very best journals, he says.

- Of course, the study has shortcomings, but as far as I can see, it is still the best done in the area.

Andreas Schröder fears that undocumented criticism and misinformation will be spread about the case. If the criticism is well documented, it should be published in a scientific journal, he points out:

- Why is the criticism expressed on a blog and not in a recognized scientific journal such as a so-called "Letter to the editor"? How many of those who have signed this letter are, in practice, experts in chronic fatigue syndrome ?, he asks rhetorically.

- It can have major consequences for patients if they lose confidence in the treatment they are offered due to incorrect information.

https://translate.google.com/transl...kdommer/hard-kritikk-av-stor-me-studie/330976

I've not read this, but he co-authored with Per Fink on the IOM report: https://jamanetwork.com/journals/jama/article-abstract/2382969

 

[rvallee]

The article discussed in this thread was re-published in the latest edition of The Danish Medical Journal (Ugeskriftet).

This edition also has a "Scientific editorial" commenting on the article by Andreas Schröder from Department of Clinical Medicine - Research clinic for Functional Disorders in Aarhus, Denmark.

He writes about "tiredness" and says science is far away from being able to define sub groups of primary chronic fatigue as specific, well defined illnesses, and that it is irresponsible to raise doubts about the few evidence based treatments that helps the patient group.

He says the article points to several studies finding mitochondrial, neuroendocrine, immunological and metabolic influences in patients with ME/CFS, but that the article also admits it's unclear whether this is primary pathology or consequences. He says that if it is consequences, partly due to how patients are handling their symptoms, it is crucial to avert them with "activating treatments" as graded exercise therapy and cognitive behaviour therapy.

If the authors on the other hand are correct in their hypothesis that there are patients who "on a cellular level will be harmed by exercise", a much more gentle, non-activating symptom treatment would be appropriate. Such a "passive" symptom treatment, which more or less equals the tiredness subjectively experienced by the patient with the assumed cellular or mitochondrial damages, is recommended by some researchers and many patient organisations world wide, as he puts it.

In some cases the chronic primarily tiredness, neglected and homeless as it is, becomes belligerent. Both carers and patients can be seen as "difficult" and mistrustful by health care personell, and one can meet patients repelling the very people who has the knowledge and will to help.

He presents the idea of the need for an International Association for the Study of Fatigue.

He ends the text by saying that one of the most important things is to listen to patients, and then links to Recovery Norge (a "patient" organisation for people who have improved with undocumented treatments, as Lightning Process) for personal stories from people who "have recovered from chronic fatigue syndrome".

Among the references are the Kate Kielland-article and Larun's Cochrane review on GET.

Ugeskriftet: Primær træthed - hjemløs, forsømt og krigersk
google translation: Primary fatigue - homeless, neglected and belligerent

It's truly the involvement of clueless people like this that ruins everything, impairs progress and maintains magical thinking.

Listen to those few handfuls of people who say something that somewhat supports my beliefs and ignore the thousands and thousands all over the world who I disagree with, along with all the research that supports it.

There is rot in the edifice of medicine. It eats whole lives, by the millions. No, thanks, to an international association for the study of fatigue, with twits like this who redefine it to mean whatever the hell they find convenient.

For all the rising power that clinical psychology is having lately, it's really past time to seriously pay more attention to the Dunning-Kruger effect because it seems to almost dominate how medicine functions at the highest levels. Not because most physicians are like this, far from it, but precisely because clueless twits like this guy are always the loudest ones to promote their personal opinions and their worthless self-interest.

I repeat myself but it's necessary here: what a clueless self-serving twit.

 

[Snowdrop]

I'm beginning to form an opinion that this way of thinking shows something else. When things are working more or less properly at the top echelons of power then those people who can't think for themselves (even if they think they can) will follow a herd that is not heading off a cliff.

But in situations where the top is all rot it exposes those who are not capable of critical analysis and who rely on supporting and defending the status quo/authority against incursion even as that authority is wrong. They think their arguments are sound. But they always start from the premise that power is right. Then they go on not so much to defend their truth as throw ad hominem aspersions at those that dare to challenge.

This particular writer seems to need to seem more reasonable than the usual tripe as it seems rather more carefully written than most in the past. As if actually responding to concerns from detractors but still arriving at the same conclusion but without ever coming to grips with the difficult facts.

 

[Ravn]

In some cases the chronic primarily tiredness, neglected and homeless as it is, becomes belligerent

Chronic primary fatigue. What next?!

Is this a case of simple, albeit inexcusable, ignorance - or a conscious attempt to ward off PEM taking over the place of fatigue as the core symptom of ME?

Belligerent comment:
Mr Andreas Schröder, what I and millions of others have is ME and with ME one symptom amongst many we get happens to be exertion-induced secondary fatigue. Which is a completely different animal to your "primary fatigue" (whatever that is). The sooner everybody gets that into their heads, the sooner we can start making some real progress.
End of belligerent comment.

 

[Kalliope]

The article discussed in this thread was re-published in the latest edition of The Danish Medical Journal (Ugeskriftet).

This edition also has a "Scientific editorial" commenting on the article by Andreas Schröder from Department of Clinical Medicine - Research clinic for Functional Disorders in Aarhus, Denmark.

He writes about "tiredness" and says science is far away from being able to define sub groups of primary chronic fatigue as specific, well defined illnesses, and that it is irresponsible to raise doubts about the few evidence based treatments that helps the patient group.

He says the article points to several studies finding mitochondrial, neuroendocrine, immunological and metabolic influences in patients with ME/CFS, but that the article also admits it's unclear whether this is primary pathology or consequences. He says that if it is consequences, partly due to how patients are handling their symptoms, it is crucial to avert them with "activating treatments" as graded exercise therapy and cognitive behaviour therapy.

If the authors on the other hand are correct in their hypothesis that there are patients who "on a cellular level will be harmed by exercise", a much more gentle, non-activating symptom treatment would be appropriate. Such a "passive" symptom treatment, which more or less equals the tiredness subjectively experienced by the patient with the assumed cellular or mitochondrial damages, is recommended by some researchers and many patient organisations world wide, as he puts it.

In some cases the chronic primarily tiredness, neglected and homeless as it is, becomes belligerent. Both carers and patients can be seen as "difficult" and mistrustful by health care personell, and one can meet patients repelling the very people who has the knowledge and will to help.

He presents the idea of the need for an International Association for the Study of Fatigue.

He ends the text by saying that one of the most important things is to listen to patients, and then links to Recovery Norge (a "patient" organisation for people who have improved with undocumented treatments, as Lightning Process) for personal stories from people who "have recovered from chronic fatigue syndrome".

Among the references are the Kate Kielland-article and Larun's Cochrane review on GET.

Ugeskriftet: Primær træthed - hjemløs, forsømt og krigersk
google translation: Primary fatigue - homeless, neglected and belligerent

Professor Ola D. Saugstad has written a comment with a reply from Andreas Schröder.

Saugstad writes among other:

What ME patients require in Norway and Denmark is simply that modern medical methods and principles must also be applied to their illness. The psychosomatic wing calls this "militant", while in reality it is just a reasonable requirement that ME patients no longer be exposed to harmful treatment and outdated attitudes. Unfortunately, for many years, ME patients in both Norway and Denmark have been exposed to some physicians' personal views on the relationship between body and soul, without listening to the patients.

Schröder does not quite agree.

Ny viden om myalgisk encefalomyelitis
google translation: New knowledge of myalgic encephalomyelitis

 

[Esther12]

Once again, we see how any use of a term like 'psychosomatic' is unhelpful, unless it's a direct quote from someone else. Whenever disputes are able to be simplified in terms like 'psychosomatic or biological' it ends up stengthening those who want to downplay the problems with research like PACE.

 

[Hoopoe]

Once again, we see how any use of a term like 'psychosomatic' is unhelpful, unless it's a direct quote from someone else. Whenever disputes are able to be simplified in terms like 'psychosomatic or biological' it ends up stengthening those who want to downplay the problems with research like PACE.

You seem to think that avoiding this term or topic would produce better results. I think we're basically asking the psychosomatic camp to admit that their work is worthless. They will never admit that.

I don't think it's a good idea to let them dictate what we're allowed to discuss. Their claims about psychosomatic illness is actually their weakest spot because there's no scientific basis to it. They're of course perfectly happy to discuss feelings and stigma. If you let them control the conversation, they'll make it flow in that direction rather than discussing the scientific validity of their ideas and studies.

 

[Esther12]

You seem to think that avoiding this term or topic would produce better results. I think we're basically asking the psychosomatic camp to admit that their work is worthless. They will never admit that.

I don't think it's a good idea to let them dictate what we're allowed to discuss. Their claims about psychosomatic illness is actually their weakest spot because there's no scientific basis to it. They're of course perfectly happy to discuss feelings and stigma. If you let them control the conversation, they'll make it flow in that direction rather than discussing the scientific validity of their ideas and studies.

What specific claim about psychosomatic illness is their weakest spot? I'm not saying that we should let them dictate what we're allowed to discuss, but I do think that we've seen, time and again, "whenever disputes are able to be simplified in terms like 'psychosomatic or biological' it ends up strengthening those who want to downplay the problems with research like PACE."

If you're engaging in a precise analysis of exactly what someone you're criticising said, and they're describing themselves as being in 'the psychosomatic camp', then that's different. However, if for example someone is criticising work like PACE, but failing to explain the details of the problems with it and instead allowing their concerns to be presented as being a result of the view PACE encourages a 'psychosomatic' understanding of CFS, then that's just going to hurt attempts to have the problems with work like PACE taken seriously.

When people try to defend PACE, what do they focus on? Is it any of the details of the dispute, or do they think it's to their advantage to present concerns about this research as coming from angry patients who view the research primarily as part of a dispute about whether CFS should be viewed as 'psychosomatic or biological'?

We'll never get them to admit that their work is worthless, but I think it's worth thinking about how the way concerns about PACE are presented can put off/persuade other influential figures. Any noise around the 'psychosomatic or biological' dispute seems to work in favour of the PACE researchers. The 'psychosomatic' label can mean so many different things that it tends to just get in the way of any real discussion imo.

 

[rvallee]

Professor Ola D. Saugstad has written a comment with a reply from Andreas Schröder.

Saugstad writes among other:

What ME patients require in Norway and Denmark is simply that modern medical methods and principles must also be applied to their illness. The psychosomatic wing calls this "militant", while in reality it is just a reasonable requirement that ME patients no longer be exposed to harmful treatment and outdated attitudes. Unfortunately, for many years, ME patients in both Norway and Denmark have been exposed to some physicians' personal views on the relationship between body and soul, without listening to the patients.

Schröder does not quite agree.

Ny viden om myalgisk encefalomyelitis
google translation: New knowledge of myalgic encephalomyelitis

So in response to the fact that this disease has been unprofessionally maligned and derailed by personal opinions that ignore all patient experience, this guy replies with his personal opinion that ignores all patient experience. Couldn't make this stuff up.

Literally all people have to do is their job. That's it, the bare minimum, and yet still not a single thing has been accomplished on that list. The psychosomatic thing has run its course. 2 decades in practice and things have actually regressed. It is an unambiguous failure on all counts, exactly as was predicted because it was entirely predictable, inevitable even. No one should find this acceptable.