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

The two-sided BPS stuff about ME: that is, we're at once lazy, but also driven perfectionists, and their illogical criticisms of pwME, reminds me of some women's magazines; learn to bake a rich and delicious chocolate cake, go on a stringent diet, get thinner thighs in thirty days, think yourself to contentment, and strive to love the way you are.
 
A post for any casual visitor to this forum who is puzzled by the strong reactions to paper being discussed:

This "research" paper - how did an opinion paper qualify for a 'research' label? - is clearly part of a wider coordinated strategy by a group not exactly motivated by pure and selfless altruism. Fittingly this group calls itself a consortium, a term typically used in corporate contexts.

There is a thesis here for a Masters student, or a nice long in-depth feature for a brave investigative journalist (not looking at you Dave, it would be nice to have somebody new get their teeth into this): compare the tactics of this consortium & associates to the Tobacco industry playbook.

To make it easy for you, here are just a few leads on what this consortium and their friends are up to:
  • they manufacture doubt by claiming scientific controversy where almost none is left, by manufacturing misleading literature (this is not the first such paper) and by taking advantage of the poor scientific literacy of the general public, media and politicians
  • they manufacture doubt by cherry-picking and misrepresenting data and the body of the evidence
  • they manufacture a false impression of large support for their views by listing lots of authors (though still only ever their own little circle) and citing each other, and by organising "scientific" conferences that then appear to support their particular opinions
  • they strawman and misrepresent the opposition
  • they deny the dangers
  • they claim to fight for individual freedom of choice
  • they lobby behind the scenes (note that some names known to engage in lobbying are not on the author list, quite possibly because they want to preserve the pretense of independence when they go about lobbying)
  • they manufacture the impression of being representatives and defenders of neglected patient groups (astroturfing)
  • they portray opposing voices as irrational activists at best and deadly dangerous ones at worst
  • they front individuals perceived as reputable by outsiders
  • they ...
A closer look is bound to reveal more, a lot more, but the above should be enough to get you started
 
Arnie Pye said:
Does saying this make the patients less difficult? What proportion of them ask for the evidence?
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As it is a red flag for me to have a medical professional say it, I find it hard to believe that many become convinced by being told it's evidence based alone.. In group sessions it can work "well" as a way to make someone quiet and stop disturbing the group. I don't have numbers, and I guess neither do my professors.

I do think it is more common in group sessions though, as for individual patient meetings someone who don't believe in the profession may be less likely to show (while group sessions can be part of a larger follow-up of someone becoming ill and there can be multiple things occurring for the patient on the same day with one lecture of diet being thrown into the mix).
 
At least there are more researchers in the post infectious field now, and more speaking up against this gang:

Long Covid researcher Resia Pretorius on Twitter:
What an ignorant and disrespectful statement: “‘May not indicate bodily disease”. ALL disease starts with definite pathophysiology. Opinions are not scientific. Perhaps they need reminding: The PACE trial was a methodological and ethical disaster.

I think this one from Independent Sage member Stephen Griffin also refers to the same:
I just thought I'd re-highlight this amazing work by
@VirusesImmunity
& co. Particularly, I'd emphasise that self-reported #LongCovid is 94% accurate, referencing validated biomarkers... Worth remembering, just in case any notorious, feckless grifters might say otherwise...


https://twitter.com/user/status/1706024442927689847


https://twitter.com/user/status/1705852971030913277
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Ravn said:
A post for any casual visitor to this forum who is puzzled by the strong reactions to paper being discussed:

This "research" paper - how did an opinion paper qualify for a 'research' label? - is clearly part of a wider coordinated strategy by a group not exactly motivated by pure and selfless altruism. Fittingly this group calls itself a consortium, a term typically used in corporate contexts.

There is a thesis here for a Masters student, or a nice long in-depth feature for a brave investigative journalist (not looking at you Dave, it would be nice to have somebody new get their teeth into this): compare the tactics of this consortium & associates to the Tobacco industry playbook.

To make it easy for you, here are just a few leads on what this consortium and their friends are up to:
  • they manufacture doubt by claiming scientific controversy where almost none is left, by manufacturing misleading literature (this is not the first such paper) and by taking advantage of the poor scientific literacy of the general public, media and politicians
  • they manufacture doubt by cherry-picking and misrepresenting data and the body of the evidence
  • they manufacture a false impression of large support for their views by listing lots of authors (though still only ever their own little circle) and citing each other, and by organising "scientific" conferences that then appear to support their particular opinions
  • they strawman and misrepresent the opposition
  • they deny the dangers
  • they claim to fight for individual freedom of choice
  • they lobby behind the scenes (note that some names known to engage in lobbying are not on the author list, quite possibly because they want to preserve the pretense of independence when they go about lobbying)
  • they manufacture the impression of being representatives and defenders of neglected patient groups (astroturfing)
  • they portray opposing voices as irrational activists at best and deadly dangerous ones at worst
  • they front individuals perceived as reputable by outsiders
  • they ...
A closer look is bound to reveal more, a lot more, but the above should be enough to get you started
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Very well summarised, Ravn.

I've had a go at picking apart the abstract, which is wrong on every level, yet written to sound convincing:

Abstract said:
The ‘Oslo Chronic Fatigue Consortium’ consists of researchers and clinicians who question the current narrative that chronic fatigue syndromes, including post-covid conditions, are incurable diseases.
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Referring to 'Chronic fatigue syndromes is a sneaky way of pretending all fatiguing illness that doesn't have an easily recognised biological basis can be lumped together. In the article they include, for example, burnout, which is not the same condition as ME/CFS. It is nonsense to try to attribute the same biological explanations, treatments or recovery rates to such different conditions simply on the grounds that both involve a vaguely defined symptom like fatigue.
Fatigue can vary in interpretation from tiredness from lack of sleep or fatigue in a healthy person after exercise, to psychological fatigue in depression, to abnormally rapid muscle and/or cognitive fatiguability that occurs during and after normal daily activities in ME/CFS.

There is no claim by anyone that any fatiguing illness in their list is incurable, particularly post infectious fatigue such as Long Covid, which is well recognised as having quite a high recovery rate in the initial few months to two years. Recovery from ME/CFS is much less likely after 2 years, with some figures given as about 5%, possibly higher in children.

Abstract said:
Instead, we propose an alternative view, based on research, which offers more hope to patients.
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This is not so much an alternative view, as an old discredited view reheated. The research quoted has been shown to be very poor quality, and routinely misrepresented by its proponents. The so called hope it offers is false hope.

Abstract said:
Whilst we regard the symptoms of these conditions as real, we propose that they are more likely to reflect the brain's response to a range of biological, psychological, and social factors, rather than a specific disease process.
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The proposed biopsychosocial model is based on flawed science and opinion not based on sound evidence. It is not new, it is rehashing of old ideas adhered to by a small group of clinicians despite evidence that treatments based on the idea are ineffective and many report harm.

Abstract said:
Possible causes include persistent activation of the neurobiological stress response, accompanied by associated changes in immunological, hormonal, cognitive and behavioural domains.
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There may be evidence to support this for burnout. There is none for ME/CFS.

Abstract said:
We further propose that the symptoms are more likely to persist if they are perceived as threatening, and all activities that are perceived to worsen them are avoided.
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This attempt to discredit the whole idea of post-exertional malaise as a physiological phenomenon is despicable and wrong. PEM is not a result of anxiety, it is a usually delayed physiological response to activity beyond the person's current activity limit, and results in significantly increased sympoms such as pain, orthostatic intolerance, nausea, headache, sore throat, sensory sensitivities etc, as well as significantly reduced ability to function physically and cognitively.

People with in PEM don't choose to lie down in darkened rooms, their symptoms give them no option. Repeated and prolonged bouts of PEM can lead to long term or permanent worsening. Activity management aimed at avoiding triggering PEM is not about anxiety or catastrophising, it is sensible response to known likely outcomes.
Referring to activities as 'perceived to worsen' symptoms is insulting. PwME don't just perceive/imagine worsening, they experience it physically.

Abstract said:
We also question the idea that the best way to cope with the illness is by prolonged rest, social isolation, and sensory deprivation.
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Characterising rest, isolation and sensory deprivation as choices based on misunderstanding of how to cope with illness is wrong and insulting to patients. People with severe and very severe ME/CFS are not choosing their lives being so restricted, the disease gives them not alternative. If you faint when you sit up, you have no choice but to lie down, if sounds cause physical pain, you are forced to live in quiet. If seeing a friend for a few minutes makes you so sick you can't get out of bed or eat for the next weeks, you are forced into isolation. To describe this as people making bad choices is insulting and shows complete lack of understanding of PEM and severe and very severe ME/CFS.

Abstract said:
Instead, we propose that recovery is often possible if patients are helped to adopt a less threatening understanding of their symptoms and are supported in a gradual return to normal activities.
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That may work in mild depression or burnout, but there is no evidence from all the many clinical trials of graded exercise therapy and CBT that people with ME/CFS improve significantly or recover better with these treatments than with standard medical care, or lack of it. Worse than useless, people with PEM are made sicker when they try to increase activity beyond their current limits. Just read the personal accounts on the S4ME petition and numerous patient surveys.
To suggest this here, as if it were a new and hopeful approach is wrong on every level and I think, criminally negligent.

Abstract said:
Finally, we call for a much more open and constructive dialogue about these conditions. This dialogue should include a wider range of views, including those of patients who have recovered from them.
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Individual recovery anecdotes are notoriously unhelpful as it is not possible for individuals to know whether improvement or recovery occurred naturally by good fortune or has any relation to whatever treatment they were doing at the time.
What they are actually arguing for here is a return to an old outdated and disproved approach to ME/CFS - lumping it with different fatiguing conditions, denying the validity of PEM, and basing their arguments on anecdotes and very poor quality research.

I don't know why I've bothered to write all this. Forum members have heard it all before, those of us with ME/CFS have been faced by this sort of denialism of our experience many many times before. It's insulting, dangerous and unscientific. The authors should be ashamed.
 
I'm confused as to what this person is saying, since I've learned not to trust that the words they are using mean whatever they seem to mean, even when they are used in what should be a rather simple fashion.
F64S_fQWUAAG1sH
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Although, falsification, what an idea. Truly a novel concept, never before tried. In psychosomatic medicine, anyway, which is built on the belief that you don't need any of fancy-shmancy stuff. And of course all functional ideologues include "chronic fatigue" in their power grab.
 
I decided to ask ChatGPT about this op-ed, and it came up with an interesting answer. See, because officially speaking ME/CFS is described as, and all the evidence supports being, a biomedical illness, just lacking in biomarker and pathophysiology, this editorial proposing the same old ideology that makes up the current model as a contrarian viewpoint is actually considered a contrarian viewpoint, even though this psychosomatic model that they are proposing yet again is what is actually believed and acted upon.

Now that is confusing. Indicative of a discipline in a state of crisis, unable to determine what is right and wrong, and how to assess evidence, or even use it properly.

Specifically, I asked "Can you offer a critique and evaluation of this research article, its scientific value and accuracy, as well as the validity of the claims made by the authors?"

And it replied:
ChatGPT said:
The article aims to challenge the prevailing narrative surrounding Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), post-covid-19 conditions, and similar fatigue-related illnesses. The critique below addresses the scientific value, accuracy, and validity of its claims.

Scientific Value
  1. Multi-disciplinary Approach: The article engages multiple disciplines, such as neuroscience, evolutionary biology, and psychology, lending it breadth. However, this also risks superficiality unless backed by deep, cross-disciplinary expertise.
  2. Patient Inclusion: The article mentions that patient representatives are part of the consortium, potentially enriching the perspectives.
  3. Contrarian View: Given that the majority of research leans towards understanding CFS/ME as primarily a physical illness, presenting an alternative viewpoint is scientifically valuable for discourse.
Accuracy and Validity
  1. Lack of Specific Evidence: The article frequently mentions the lack of specific biomarkers and pathology for CFS/ME but fails to sufficiently recognize the existing literature that discusses potential biological mechanisms, posing a risk of cherry-picking.
  2. False Equivalence: The overlap of symptoms with other conditions does not necessarily invalidate the specificity or distinctiveness of CFS/ME.
  3. PEM Characterization: Post-exertional malaise is a cardinal symptom in ME/CFS diagnostic criteria. The article's dismissal of its specificity contradicts current consensus.
  4. Psychologizing Symptoms: While acknowledging that symptoms are "real," the article leans towards a psychosomatic explanation. This has been a point of contention and potential stigmatization in CFS/ME discourse.
  5. Treatment Recommendations: Recommending CBT and graded exercise therapy (GET) is controversial, as some studies and patient reports have indicated these treatments can worsen symptoms in CFS/ME.
Ethical Considerations
  1. Stigmatization Risk: The article's push towards including psychological and social factors in the diagnosis could perpetuate existing stigmatization.
  2. Disclosure Statement: The authors disclose potential conflicts of interest, which is ethical but also indicates potential bias especially related to CBT and GET treatments.
General Observations
  1. Polarizing Tone: The text might alienate some readers, particularly those who disagree with its central thesis, which could limit its impact.
  2. Broad Generalizations: The paper risks over-generalizing by bundling CFS/ME, Long Covid, and other fatigue conditions without adequately distinguishing among them.
In summary, while the article adds a voice to the multidisciplinary debate on fatigue-related conditions, its claims are not universally substantiated by existing evidence. The article risks cherry-picking data, and its recommendations could be seen as controversial or even detrimental by a subset of healthcare providers and patients.
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Just for fun, I asked a follow-up question: "Are there incorrect facts in the article? And what evidence supports the assertions made by the authors?"
ChatGPT said:
Incorrect Facts
  1. Diagnosis Labels of Limited Value: The article argues that diagnostic labels like CFS/ME are of limited value, which contradicts consensus in the medical community where such labels guide evidence-based treatment.

  2. Post-Exertional Malaise (PEM): The article implies that PEM is not specific to CFS/ME, whereas current diagnostic criteria for CFS/ME regard PEM as a distinctive symptom.

  3. Patients Do Recover: The assertion that patients often recover and get back to work may not align with longitudinal data on CFS/ME, which show that full recovery is rare.

  4. Treatments Like CBT and GET: The article's recommendation of CBT and GET for CFS/ME lacks nuance. While some patients report improvements, others report these therapies can exacerbate symptoms.
Evidence Supporting Assertions
  1. Broadening the Narrative: The authors aim to balance the dominant narrative that portrays CFS/ME solely as an incurable physical disease. The idea is not entirely unfounded, as medical science often evolves through paradigm shifts that may encompass a range of perspectives.

  2. Symptoms Generated by the Brain: The authors correctly cite that neural networks in the brain play a role in symptom experience. However, this is not unique to fatigue-related illnesses and doesn't negate a physiological basis for symptoms.

  3. Activity and Rest for Rehabilitation: Some research does indicate that a carefully managed increase in activity can be beneficial for some patients with chronic fatigue. However, this recommendation is a point of contention in CFS/ME treatment, and the evidence is not universally accepted.

  4. Biopsychosocial Model: The authors propose a multi-factorial biopsychosocial model to understand CFS/ME, which aligns with a broad understanding of health but may risk diluting the focus on identifying specific biomarkers or etiologies.
In summary, while the authors cite scientific evidence to support their claims, the interpretation of this evidence is contentious. The article appears to ignore or undervalue research that contradicts its thesis, resulting in a presentation that may lack balance.
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As I would expect, ChatGPT can only parrot what it finds in this and other documents. It can't distinguish, for example, the claim in the article that this is a new approach from the fact that it's just the old discredited approach reheated. It's an interesting experiment, but until it can sort the wood from the trees, I think it just adds to confusion by muddling together sensible and nonsensical stuff.
 
rvallee said:
I'm confused as to what this person is saying, since I've learned not to trust that the words they are using mean whatever they seem to mean, even when they are used in what should be a rather simple fashion.

Although, falsification, what an idea. Truly a novel concept, never before tried. In psychosomatic medicine, anyway, which is built on the belief that you don't need any of fancy-shmancy stuff. And of course all functional ideologues include "chronic fatigue" in their power grab.
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It's a FND patient who got gaslit by grifter neuropsychologists and doesn't get the memo that outside those small circles nobody takes FND seriously (unless it's used to dismiss or mock patients)
 
JemPD said:
You're wrong, your feelings are wrong, your behaviour is wrong, your coping mechanisms are wrong, your adaptations are wrong, your thoughts are wrong, your personality is wrong. It doesnt matter what those feelings/thoughts behaviour etc actually are. The specifics are irrelevant because whatever you do, think, feel, whoever you are, it will be found to be wrong. You are just. Wrong.
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It's such a hope-evoking message, isn't it?
 
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