Opinion Chronic fatigue syndromes: real illnesses that people can recover from, 2023, The Oslo Chronic Fatigue Consortium

rvallee · Nov 11, 2024

They could have simply provided a poop emoji with the alt text "we do whatever we want" in response. Same thing. This isn't even an explanation. Medical doctors should not be promoting pseudoscience, as opinion or not. But clearly this is far too much to actually expect, given that we are still firmly in the pre-truth era anyway.

It's going to be so much fun when the US government pushes the FDA to start recommending raw milk to address the growing problem of immunity debt and everyone who has pushed this lie will surprised Pikachu face in insincere confused dissonance as to why anyone would apply their idea to an identical issue.

And by "so much fun" I mean no fun at all, of course, but since words no longer have meaning in health care, whatever. Same difference.

mango · Mar 1, 2025

mango said: ↑

An article by Jörgen Malmquist in SFAM's journal AllmänMedicin, issue 3-2024.

("SFAM, the Swedish Association of General Practice, is the professional and scientific college of general practitioners (family physicians) in Sweden, a non-profit organisation with about 2000 members. SFAM is affiliated to the Swedish Society of Medicine (Svenska Läkaresällskapet) as well as the Swedish Medical Association (Läkarförbundet). Main areas of interest for SFAM are continuing professional development, training of future GPs, assessment of competence, quality improvement and research in general practice/family medicine.")

Hur ska vi tänka när vi möter patienter med långvariga trötthetstillstånd?
https://allmanmedicin.sfam.se/p/all...riga-trotthetstillstand/1919/1587765/57081593
Click to expand...

SFAM has published a reply in their most recent issue, written and signed by Docent Sten Helmfrid, Professor Jonas Bergquist, Professor Emeritus Anders Rosén, Dr Per Julin, Dr Judith Bruchfelt, Dr Lisa Norén who also represents the Swedish Covid Association, a representative for RME (the Swedish ME Association), and others.

SFAM also published the final say from Malmquist and Englund at the same time.

Text version of the reply:

AllmänMedicin gör sig till megafon för lobbyister
https://allmanmedicin.sfam.se/p/all...-megafon-for-lobbyister/1919/1849165/60927483

Auto-translate said:

AllmänMedicin becomes megaphone for lobbyists

Malmquist and Englund have recently published an article in AllmänMedicin, where they uncritically reproduce an opinion piece from the lobby group The Oslo Chronic Fatigue Consortium and give questionable treatment advice for ME/CFS based on the article [1, 2].

The background to the consortium's debate article is that the British authority NICE published new guidelines for ME/CFS in 2021 [3]. Previous guidelines were based on the so-called cognitive model of ME/CFS, which was launched in the late 1980s [4, 5].

Patients are assumed to be stuck in a spiral of negative beliefs and inactivity, which should be broken with cognitive behavioural therapy and gradually increased exercise. Treatment studies of the model that have claimed positive results have not been blinded and have lacked primary, objective outcome measures, making them susceptible to systematic bias [6, 7]. Analyses of secondary endpoints suggest that all of the modest self-reported improvement is likely due to bias [8]. This and other weaknesses in the studies have led several health authorities, including NICE, to update their guidelines for ME/CFS and no longer support the cognitive model [3, 9].

The consortium was formed by stakeholders of the cognitive model to defend it. In the opinion piece, they point to the lack of biomarkers for ME/CFS and say that it is time for a ‘new’ perspective, even though the perspective they propose is more than 30 years old and has not yet provided any credible answers [10].

They see no need to distinguish ME/CFS or other post-infectious syndromes such as post-covid from long-term fatigue, although expert studies have come to the opposite conclusion [11, 12]. They claim that patients can be rehabilitated with gradual increases in exercise, citing studies that have been condemned as unreliable [13]. They claim that the prognosis is not bad at all and refer to anecdotal evidence, despite studies showing that the prognosis for adults where the disease is established is poor [14, 15].

Malmquist and Englund use the consortium's theses to give recommendations on how people with ‘long-term fatigue’ should be treated in healthcare, without making it clear that the consortium's article is an opinion piece. They write that ‘words hurt’ and imply that the diagnosis of ME/CFS as such leads to illness and longer sick leave. They also suggest a link between the diagnosis and several high-profile suicides. There is no scientific evidence that the diagnosis has a negative impact on the course of the disease. Patients themselves often describe it as a relief [16].

Surveys from several European countries show that the average time from onset to diagnosis is between 5 and 12 years [17]. Most people who are diagnosed are already chronically ill. A study of the mental health of people with ME/CFS shows that the most common cause of suicidal ideation is hearing claims that the illness is psychosomatic and has nothing to do with the diagnosis [18].

Malmquist and Englund suggest referring patients to Recovery Norway, an association of people who consider themselves to have recovered from ME/CFS using mental health methods and who tell their stories to ‘give hope’. No positive treatment effect of these methods has been proven in controlled studies.

One of the founders of the association is Live Landmark [19], who belongs to the consortium and promotes the controversial Lightning Process mental health method. The association has been heavily criticised by Norwegian patient advocates, partly because it does not report negative experiences [20] and in practice allows the ban on marketing treatments with patient stories to be circumvented [19].

There is a lack of knowledge about ME/CFS in healthcare. It is strange that AllmänMedicin chooses to publish a strongly biased text instead of summarising current guidelines from, for example, NICE [21]. It also gives a bad impression that Malmquist and Englund do not clearly state that the reproduced article from the consortium is an opinion piece and not an official treatment guideline.
Click to expand...

(Some of you might recognise the title of the piece from one of @MittEremltage's previous blog posts.)

Malmquist and Englund final say, text version:
https://allmanmedicin.sfam.se/p/all...agnosen-en-konstruktion/1919/1849165/60927487

Auto-translate said:

Final response from Malmquist and Englund: ME symptoms are real, but the diagnosis is a construct

It is an outdated view to believe that a patient's symptoms are not real if they can be understood in a perspective that includes beliefs, fears and feelings of powerlessness in the face of the diagnosis. The latter is specifically true in the case of ME, where the prognosis may mean no longer being able to move freely outdoors, meet other people or cope with work. In the worst case, they may not even be able to perform ADLs.

What you feel, you feel. The patients with severe fatigue that we meet at an early stage are worthy of the kind of comprehensive analysis of the whole life that a good general medical approach entails. The versatility of having a holistic view that also includes emotions, social conditions and one's own thoughts is denied to these patients if they end up in the negative spiral with a high risk of social contagion that the ME diagnosis entails.

The authors claim: ‘There is no scientific evidence that the diagnosis has a negative impact on the course of the disease.’ It is easy to understand that a randomised or even prospective study of this would not be possible or ethical. Yet all clinicians know that in all diagnoses, even those with a recognised poor prognosis, one's own will and attitude to life has a major impact on how one feels about the life one has left.This applies, for example, to diseases such as metastatic cancer, progressive MS, severe heart failure and ALS. As a general practitioner, it is difficult to understand why this should not be the case in ME. Such a view, held by supporters of the ME concept, which can exclude any influence of one's emotional life and one's thinking, is not an open or scientific approach.

Even those people previously labelled with the ME diagnosis are believed to be healthy. They just ‘think’ they have recovered. If you recovered, it was not ME. The ME community also believes that if you feel better by changing your attitude to your symptoms and reducing your avoidance strategies in life, it was not ME.
The positive message from the SJPHC article is that the symptoms you have are real (of course) and that it is possible to get well. So the difference between this view and the one put forward by Helmfrid and colleagues is really just the happy message that the prognosis need not be hopelessly bad. Yes, in that sense the article can be called a positive opinion piece. At the same time, the 46 mostly scientific and peer-reviewed articles it refers to provide good scientific support for what it says.

Our article is not an ‘official treatment guideline’, nor has it pretended to be. Conditions of long-term fatigue, which can have so many different causes, require a broad, unbiased and comprehensive general medical approach and this cannot be described in restrictive guidelines.

No conclusive symptom or medical finding, or conclusive test for ME has yet been found. The diagnostic criteria for ME are entirely subjective. Such criteria operationalise but do not reify. In other words, the criteria indicate what an expert or group believes is required for a diagnosis of ME. However, the criteria do not prove that there really is a clinical entity corresponding to the criteria.

Any diagnosis based solely on symptom criteria is a social construct that is subject to change or cancellation. A diagnosis may be abolished, for example, by being included in another diagnostic concept.

Some of the authors of this article work with what is called post-covid, or have been diagnosed with it themselves. The impact that one's own attitude can have on the symptoms of a potentially serious illness such as COVID-19 is illustrated by British colleague and researcher Paul Garner, who developed post-COVID syndrome himself. Initially an advocate of the concept and its recognition, he then changed his mindset to the view that you can get well by changing your perception of what the different symptoms represent and by being treated with behavioural therapy. In a short time, he went from a severely debilitating condition to resuming his training. He now works in global research networks with the intention of helping people recover from various post-infectious conditions.

Along with one of the authors of the SJPHC article, Henrik Vogt, Garner writes that the patient's personal philosophy, how they perceive their symptoms and how they respond to the disease are of great importance. These aspects influence not only the quality of life but also the health problems themselves [1].

As a general practitioner, you see patients with various symptoms of fatigue and muscular pain at an early stage of the condition. There is still an opportunity to adopt a salutogenic perspective - to recognise what is still working and to point out the possibilities that exist through gradual activation and to have a view of the condition that includes a good prognosis and to support the patient in such a way of thinking and acting. Avoidance behaviour, often based on unjustified fear, can then be addressed, thus protecting the patient from the influence of pessimistic prophecies. Before that, as Helmfrid and co-authors write, ‘the prognosis for adults where the disease has become established is poor’.

No conflicts of interest.

Jörgen Malmquist
Retired specialist in internal medicine, Höllviken

Lars Englund
General practitioner, Jakobsgårdarnas vårdcentral, Borlänge
Click to expand...

The same replies but in a different format (with the same layout as the journal):
https://allmanmedicin.sfam.se/p/allmanmedicin/nr-1-2025/r/5/8-9/1919/1849165

Utsikt · Mar 1, 2025

@mango I’m terrible at reading Swedish. What does ‘Jäv saknas’ mean? It’s at the end of their reply.

mango · Mar 1, 2025

Utsikt said: ↑

@mango I’m terrible at reading Swedish. What does ‘Jäv saknas’ mean? It’s at the end of their reply.
Click to expand...

"no conflict of interest"

I never know if it's worth adding a translation of the Swedish texts I'm linking. Not sure if people read them, if it's worth the effort? I've added an auto-translated text of the article now (see the original post).

Utsikt · Mar 1, 2025

mango said: ↑

"no conflict of interest"

I never know if it's worth adding a translation of the Swedish texts I'm linking. Not sure if people read them, if it's worth the effort? I've added an auto-translated text of the article now (see the original post).
Click to expand...

I just use the translate function in google chrome - it has gotten pretty accurate. But I can’t translate the images with their reply.

mango · Mar 1, 2025

I've added auto-translations to both the SFAM texts now (see the original post).

Peter Trewhitt · Mar 1, 2025

mango said: ↑

I never know if it's worth adding a translation of the Swedish texts I'm linking. Not sure if people read them, if it's worth the effort? I've added an auto-translated text of the article now (see the original post).
Click to expand...

Thank you for sharing, there are important debates happening in Sweden which is relevant to the rest of the World.

mango · Mar 1, 2025

Utsikt said: ↑

I just use the translate function in google chrome - it has gotten pretty accurate. But I can’t translate the images with their reply.
Click to expand...

Thanks, good to know I've added a link to a text-version of both the articles now.

Thank you, @Peter Trewhitt!

(Sorry for all the edits, the brainfog is very thick today...)

Hutan · Mar 1, 2025

mango said: ↑

I never know if it's worth adding a translation of the Swedish texts I'm linking. Not sure if people read them, if it's worth the effort? I've added an auto-translated text of the article now (see the original post).
Click to expand...

I really appreciate the translations. I would not necessarily bother to translate an article unless the poster told me it was an important one.

In the case of the reply from Sten Helmfrid and others, I found the translation very useful. That reply was very well written, I think the wording deserves to be noted and used elsewhere. For example this:

The background to the consortium's debate article is that the British authority NICE published new guidelines for ME/CFS in 2021 [3]. Previous guidelines were based on the so-called cognitive model of ME/CFS, which was launched in the late 1980s [4, 5].

Patients are assumed to be stuck in a spiral of negative beliefs and inactivity, which should be broken with cognitive behavioural therapy and gradually increased exercise. Treatment studies of the model that have claimed positive results have not been blinded and have lacked primary, objective outcome measures, making them susceptible to systematic bias [6, 7]. Analyses of secondary endpoints suggest that all of the modest self-reported improvement is likely due to bias [8]. This and other weaknesses in the studies have led several health authorities, including NICE, to update their guidelines for ME/CFS and no longer support the cognitive model [3, 9].

The consortium was formed by stakeholders of the cognitive model to defend it. In the opinion piece, they point to the lack of biomarkers for ME/CFS and say that it is time for a ‘new’ perspective, even though the perspective they propose is more than 30 years old and has not yet provided any credible answers [10].
Click to expand...

Utsikt · Mar 1, 2025

The versatility of having a holistic view that also includes emotions, social conditions and one's own world of thought is denied to these patients if they end up in the negative spiral with a high social risk of contagion that the ME diagnosis entails.
Click to expand...

Obvious strawman in the first part - all we’re saying is that emotions, thought and social interactions don’t cause ME/CFS. Last one is pure delusion.

Nevertheless, all clinically active doctors know that with all diagnoses, even those with an acknowledged poor prognosis, one’s own will to live and attitude play a major role in how one experiences the remaining life. This applies, for example, to diseases such as disseminated cancer, progressive MS, severe heart failure and ALS. As a general practitioner, it is difficult to understand why this should not be the case with ME. Such an approach, as supporters of the ME concept have, which can exclude all influence from one’s emotional life and one’s thoughts, is not an open or scientific approach.
Click to expand...

I don’t understand where they get this from. Who’s saying that we shouldn’t consider the human experience when you’ve got ME/CFS? It feels like they are the ones that want deny the reality of how ME/CFS is often chronic.

People who were previously diagnosed with ME are even told to recover. They just “consider” themselves to have recovered. If you recovered, it wasn’t ME. The ME community also believes that if you feel better by changing your attitude towards your symptoms and reducing your avoidance strategies in life, it wasn’t ME.
Click to expand...

This is a fair point, and it should be addressed.

The positive message from the article in SJPHC is that the symptoms you have are real (of course) and that it is possible to get well. So the difference between this view and the one that Helmfrid and colleagues put forward is really just the message of joy that the prognosis does not have to be hopelessly bad. Yes, in that respect the article can be called a positive opinion piece. The 46 mostly scientific and peer-reviewed articles that are referenced also provide good scientific support for what is being put forward.
Click to expand...

The only difference isn’t the prognosis. ‘Good scientific support’ is a laughable characterization.

Nothing decisive in symptoms or medical findings, or any decisive test for ME has still not been found. The diagnostic criteria for ME are entirely subjective. Such criteria operationalize but do not reify. In other words: the criteria state what an expert or group believes is required for the diagnosis of ME to be made. However, the criteria do not prove that there really is a clinical entity that corresponds to the criteria.
Click to expand...

What does ‘clinical entity’ mean in this context? Is it not a construct in itself, and therefore just as valid or invalid as the clinical entities?

All diagnoses that are based solely on symptom criteria are social constructs that can be changed or abolished. A diagnosis can be abolished by, for example, being subsumed into another diagnostic concept.
Click to expand...

What’s the relevance of this statement? It’s kind of scary to think that they are conscious about abolishing a diagnosis based on what’s going on with the fatigue/MUS-register in Norway.

The importance of one's own attitude to the problems one experiences after such a potentially serious illness as covid-19 is illustrated by the British colleague and researcher Paul Garner, who himself developed a post-covid syndrome. At first, he was an advocate of the concept and its recognition, but then changed his view to the fact that one can get well by changing one's perception of what the various symptoms mean and by being treated with behavioral therapeutic methods. In a short time, he went from a severely disabling condition to resuming his training. He now works in global research networks with the intention of helping people get well in various post-infectious conditions.
Click to expand...

What a lovely thing to do!

Together with one of the authors of the SJPHC article, Henrik Vogt, Garner writes that the patient's personal philosophy, how they perceive their problems and how they act in response to the disease are of great importance. These aspects affect not only the quality of life but also the health problems themselves [1].
Click to expand...

1 is this: https://www.s4me.info/threads/long-...fecting-public-health-2023-garner-vogt.35820/

As a general practitioner, you meet patients with various symptoms of fatigue and muscle pain in an early stage of the problem. Then there is still an opportunity to adopt a salutogenic perspective – to focus on what is still working and point out the possibilities that exist through gradual activation and to have a view of the condition that includes a good prognosis and to support the patient in such a way of thinking and acting. Avoidant behavior that is often due to unjustified fear can then be addressed and thus protect the patient from the influence of pessimistic prophecies. Before that, as Helmfrid and co-authors write, “the prognosis for adults where the disease has been established is poor”.
Click to expand...

What does it mean that a disease is ‘established’? You’ve got a diagnosis? You believe you’ve got the disease? You act as if you’ve got a disease?

Peter Trewhitt · Mar 1, 2025

This is definitely the same thinking as a gambler approaches money, it is possible you could make money from betting or from lotteries, some people even do win a lot of money, but none of this makes it probable or reasonable to expect that encouraging people to gamble will provide them with a good income.

We really need a recovery programme for clinicians, an equivalent of ‘gamblers anonymous’ to wean these clinicians away from their curative exercise, CBT, LP, etc addiction; to teach them possible does not mean probable.

mango · Mar 1, 2025

Utsikt said: ↑

What’s the relevance of this statement? It’s kind of scary to think that they are conscious about abolishing a diagnosis based on what’s going on with the fatigue/MUS-register in Norway.
Click to expand...

I'm not sure, but I've recently seen comments on social media alluding to a ME clinic changing some patients' diagnosis to functional somatic disorder when they don't recover. (I don't have more specific info about that at the moment, sorry.)

Here's an example:
https://bsky.app/profile/funkishen.bsky.social/post/3lj5rmrtptc2v

Utsikt · Mar 1, 2025

mango said: ↑

I'm not sure, but I've recently seen comments on social media alluding to a ME clinic changing some patients' diagnosis to functional somatic disorder when they don't recover. (I don't have more specific info about that at the moment, sorry.)

Here's an example:
https://bsky.app/profile/funkishen.bsky.social/post/3lj5rmrtptc2v
Click to expand...

I read that post as saying that they changed the ME/CFS diagnosis to FSD. Not that they changed it when they didn’t recover from ME/CFS. I’m using auto-translate so my interpretation might not be correct.

Although you wouldn’t have a diagnosis if you recover, so it’s technically true that it was changed for the people that still are sick (if we take the post at face value). We just don’t know if non-recovery was the reason. It’s the whole correlation vs causation issue.

mango · Mar 1, 2025

Utsikt said: ↑

I read that post as saying that they changed the ME/CFS diagnosis to FSD. Not that they changed it when they didn’t recover from ME/CFS. I’m using auto-translate so my interpretation might not be correct.

Although you wouldn’t have a diagnosis if you recover, so it’s technically true that it was changed for the people that still are sick (if we take the post at face value). We just don’t know if non-recovery was the reason. It’s the whole correlation vs causation issue.
Click to expand...

Yes, sorry. Some context is missing in that example. I'm unable to share more because the other examples/sources are from private Facebook groups.

Sean · Mar 2, 2025

Strawmen, par excellence.

Utsikt · Mar 2, 2025

mango said: ↑

Yes, sorry. Some context is missing in that example. I'm unable to share more because the other examples/sources are from private Facebook groups.
Click to expand...

Ah, the usual issue. I wouldn’t put it past them to claim that ME/CFS is something you recover from, and that if you don’t recover, you’ve got FND, etc. instead.

MittEremltage · Mar 2, 2025

mango said: ↑

SFAM has published a reply in their most recent issue
Click to expand...

I have summarized what has happened from the time the original article was published until the reply was finally published (a lot of fuss) if anyone is interested.

Autotranslated blog:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

Arnie Pye · Mar 2, 2025

From the second quote in post #210 in this thread said:

Nevertheless, all clinically active doctors know that with all diagnoses, even those with an acknowledged poor prognosis, one’s own will to live and attitude play a major role in how one experiences the remaining life.
Click to expand...

[sarcasm]Our patients are dying! Let's make sure we blame them before anyone can blame us.[sarcasm off]

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