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

Arnie Pye said:
The problem with this is that once a psychological explanation is in place biological research into a condition often ceases.
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Never have to provide any evidence. Never have to face accountability for being wrong. Never any liability for massive harm done. Just move on to other stuff and repeat the exact same thing.

The perfect failure loop. Seriously this is literally the absolute perfect way to fail. It's not possible to manufacture a more perfect way to fail endlessly. Peptic ulcers used to be the main psychosomatic disorder. It was raging when Marshall and his team dunked on their BS. Have we seen even a single mention in the years of this forum? I don't remember there being a single one. IBS basically took up the mantle. But it's as if this never happened. As if the Cult of the end of the world on December 21 2012, still called that, never said that. With the name still on the building and letterhead and everything.

Now I guess that we are the main thing, and once it gets invalidated literally nothing will change unless there are serious consequences. I know it's common to want to be conciliatory, and there are merits until we actually manage to get out of the black list, but unless there are real career-ending multi-billion dollar liability consequences in multiple places, it will just keep on cycling again and again. It has to hurt so that they stop hurting us with impunity.

At least until artificial intelligence basically puts a stop to this by simply not giving a damn about it and just marking the whole thing as failure, riddled with logical fallacies and not worthy of consideration. Which will happen. It's only a matter of time. But until then the injuries just continue, while the insults get even more brazen.
 
rvallee said:
Never have to provide any evidence. Never have to face accountability for being wrong. Never any liability for massive harm done. Just move on to other stuff and repeat the exact same thing.

The perfect failure loop. Seriously this is literally the absolute perfect way to fail. It's not possible to manufacture a more perfect way to fail endlessly. Peptic ulcers used to be the main psychosomatic disorder. It was raging when Marshall and his team dunked on their BS. Have we seen even a single mention in the years of this forum? I don't remember there being a single one. IBS basically took up the mantle. But it's as if this never happened. As if the Cult of the end of the world on December 21 2012, still called that, never said that. With the name still on the building and letterhead and everything.

Now I guess that we are the main thing, and once it gets invalidated literally nothing will change unless there are serious consequences. I know it's common to want to be conciliatory, and there are merits until we actually manage to get out of the black list, but unless there are real career-ending multi-billion dollar liability consequences in multiple places, it will just keep on cycling again and again. It has to hurt so that they stop hurting us with impunity.

At least until artificial intelligence basically puts a stop to this by simply not giving a damn about it and just marking the whole thing as failure, riddled with logical fallacies and not worthy of consideration. Which will happen. It's only a matter of time. But until then the injuries just continue, while the insults get even more brazen.
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yep then setting themselves up an area where they are ‘above measurement or accountability’ vs their colleagues has basically made them unlicensed. And talk about competitive advantage vs getting all that cushy funding nicked from their colleagues picking up their slack on the real jobs when they get to play by different (non) rules vs the licensed rules.

Indeed, and ‘cleverly’ (although I don’t credit deceit and opportunism as ever being akin to intelligence as it’s normally the option of the thick snd/or lazy and is driven by lack of motivation to do things properly) the issue is they’ve now co-opted so much of the ‘system’ into this useless stream. The Harry half-job as long as you can claim throughout of first appointments to get your money it doesn’t matter if your outcomes are you create more work for others to fix rather than being ‘helpful’.

which good colleagues who still do s real medicine job kid themselves isn’t actually in its current form anyway already dumping all the work on them whilst the cushy-job chasers prance around causing damage. And they have been kidded into thinking that if eg the 10% of the nhs workforce who’ve gravy-trained themselves into doing jo longer medically relevant but cushy 9-5 if that ‘motivating women’ roles then ‘who will deal with all these problem women’? Hence the fake stats and lies in the IAPT sales pitches of ‘cheap at any cost’.

they forget if they just sacked this massive tranche of opted-out of the real work ‘medics’ and offered reprogramming, retraining and redeployment with stringent oversight for their radicalism views of certain demographics then these people would be unable to create the MORE work for normal medics and the health system that their gravy train causes. As well of course as freeing up the huge amounts of funding they’ve snaffled from proper services. And making just treating patients more straightforward and their medical histories wouldnt have been gerrymandered with fake labels.

These good staff are as much if not more victims of these slackers so whilst they are being kidded they’d ‘have to apologise for them’ well no they don’t really they just need to be absolutely unequivocal in placing the blame on those staff and not the patients who were also their victims. ‘Sorry it happened’ yes, just as we feel sympathy for the good medics who had to put up working with that lot and whatever power games were going on there too.

people have been lied to that there would be some awful pain barrier with getting shot if the rot - beyond the staff who told themselves out and deskilled themselves - which said rubbish staff will always try and say as lies in any organisation and once gone few find ‘oh gosh they were right look at all this work they’ve been saving us from’ (there’s normally a dig deeper and find other dodgy stuff that hit missed and hidden in reality).

it’s just a crap staff issue, a bad area issue. That they’ve spent decades trying to pretend is ‘then shielding the rest from these patients’ which is both mental health stigma AND weaponising mental health with fake lies to grin power over said patients and I find the most immoral snd unprifessional thing even if it was an evil layperson might try to do.

why are their colleagues falling for being told an increasing proportion. If those trained to be actual medics getting siphoned off into fake cushy pseudo med where they don’t pull their weight and nock all the funding because err they have all the time and energy in the world to write those grant apps vs the competition doing the real job and having to design research within licensed regulations will ‘get better and not worse if they do nothing’?

if a school had a bunch of crap teachers who the rest were having to re-teach all the kids in later years and not just that but fix the ingrained issues the misinformation caused who had nicked all the funding for clubs and trips and training so there were a smaller snd smaller % of teachers in each school actually doing real teaching. Well then you’d hope someone would think that leaving that rot in and that % to grow because eventually no one can keep ‘doing things right and not join the dark side’ because it’s too much overtime picking up after the slackers needed to be tackled.

it’s the old fallacy of the parasite telling you that at least they give you someone to send ‘all these people to’ and his will you deal with not having that dodgy course? But given it harms the same people and they come back less well and more confused just as if you sent someone to a place that didn’t complete an MOT of repair properly to ‘save yourself work’ didn’t actually ‘save you work’ at all.

this type of colleague/employee always gonna tell these myths.

in this particular area but beyond I can’t think of a single thing their nonsense got right or does right if hasn’t screwed guven they genericused snd funnelled funding from the specific and more severe in mental health too snd all the issues they let grow in asd provision snd do on. Yet people are ‘too scared’ to realise this and let them go and get the professionals back in because of the blathering threats of ‘the patients will suffer and the conditions are too important’ yes, which is why it needs to be fixed not have people made too scared to fix it.
 
Hoopoe said:
Psychosomatic explanations for illness are a placeholder that exists to control patients until the biomedical science catches up and makes the illness treatable.

Get the patients high on positive thinking and they won't bother others with their complaints. Alternatively, instill in them belief that they brought this on themselves and have no medical problem and then they won't waste the doctor's time (who can't help anyway).
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I see someone else already commented in the same vein but while it's mean to paint us in a corner we can't get out of, there isn't really any intent to have biomedical science catch up. If there were they would've made the appropriate funding available and if they'd do that there wouldn't be so much backlash from a patient community that's thrown by the wayside.
 
Midnattsol said:
Psychologist Frøydis Lilledalen has written an opinion in reply to the Dagens Medisin (Daily Medicine) article where Reme was interviewed, open access:

Håpspredikantene - når troen på medisin trumfer troen på mennesket
The preachers of hope - when faith in medicine trumps faith in man
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An excellent article by a psychologist about the Oslo Consortium and the Lightning Process as faith based medicine. Here are a couple of extracts, as per Google Translate:

For the past 40 years, ME patients have been met with the same implicit idea that it is primarily the will and the personality that is sick in post-viral patients, not the body.

Or one can insist that the method and theory are infallible, and that it is the patients who are at fault.

Based on the same belief regime, treatment services have been created in the state and municipalities, and NAV often requires both cognitive therapy and a lightning process course before granting financial support to patients.

Doctors and psychologists must of course be allowed to believe. The "Oslo Declaration" shows that healthcare personnel can also believe in groups. But such postulates of faith become problematic when research points in a different direction.
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There are two possible consequences of the research from FAFO/SINTEF. One can take it into account, and develop new offers that take care of residual function and relief with a focus on the cardinal symptom of ME; exercise-induced disease exacerbation.

Or one can insist that the method and theory are infallible, and that it is the patients who are at fault.
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Image shared on twitter from a paywalled psykologisk.no article about the consortium, translation:

"- It may be perceived as there is hard fronts, but there really isn't on the research front. We have good dialogue across different fields, says Reme.

She herself researches the condition from a biopsychosocial perspective, with the focus that there can be both biological, psychological and social processes involved in a complex interaction that perpetuates the symptoms.

- I still think it's good that Karl Joan Tronstad, a biochemist that researches biological factors at Haukeland hospital, have received funding.We work towards the same goal even if we have different approaches. The goal is to figure out how we can help these [end of image]"

Again with rewriting the narrative and changing what the "hard fronts" are about.

twitter-user said:
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From the caption under the photo in the article:
Chronic fatigue is a long-term condition impacting millions of people globally with a wide range of symptoms, the most common of which is extreme tiredness.
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Oh dear.

Really sad to see the uninformed witterings of this group getting picked up and spread far and wide, in this case to Malaysia. That said, I think the article will leave an uninformed reader with quite a confused impression and possibly not the one the consortium hoped to get across, as there are two paragraphs about the NICE guideline:

A UK National Institute for Health and Care Excellence (Nice) guideline, published in 2021, said that graded exercise therapy should no longer be recommended for people with ME/CFS.

The guideline says ME/CFS is a complex condition where there is no “one size fits all” approach to managing symptoms, and says any therapy will depend on the patient’s preferences and should not represent a fixed increase in activity.
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Maybe there are lessons there for us when preparing content for general audiences - focus on our messages, and not on repeating what the other side has said, and take advantage of the fact that we have 'big guns' on our side.
 
The longer the main NHS site has this
"Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition with a wide range of symptoms. The most common symptom is extreme tiredness."

as its opening line, with no mention of PEM or emphasis/clarification that 'chronic fatigue' is not the same as ME or CFS this message is going to be continuously spread far and wide.

I wish those in a position to put pressure on the NHS (UK, England) to get the site updated now
would take seriously the harm that this is doing; undermining any progress made through the change in the NICE guidelines.
 
Who exactly can compel NHS England to remove it's damaging, trivialising description of ME and it's symptoms, and replace the pages with up to date information that reflects the seriousness of the disease?

When the inventor and champion of the CBT/GET/deconditioning model of ME/treatment is now a Director of NHS England - who can overrule the NHS England Board?
 
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Hutan said:
From the caption under the photo in the article:

Oh dear.

Really sad to see the uninformed witterings of this group getting picked up and spread far and wide, in this case to Malaysia. That said, I think the article will leave an uninformed reader with quite a confused impression and possibly not the one the consortium hoped to get across, as there are two paragraphs about the NICE guideline:



Maybe there are lessons there for us when preparing content for general audiences - focus on our messages, and not on repeating what the other side has said, and take advantage of the fact that we have 'big guns' on our side.
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Yes absolutely there are.
 
She herself researches the condition from a biopsychosocial perspective, with the focus that there can be both biological, psychological and social processes involved in a complex interaction that perpetuates the symptoms.

Oh there is certainly some seriously pathological post-onset psychological and social (and political) processes at work here in delaying accurate description and effective treatment, and perpetuating the whole shit show.

Just not the ones she is trying to impute to patients.

These people seem constitutionally incapable of holding a mirror up to their own behaviour and its appalling consequences.
 
Trial By Error: More of the Same Old Nonsense from the “Oslo Chronic Fatigue Consortium”

"It is extremely dispiriting to have to respond to yet another wail of desperation from psychologizing dead-enders who have lost control of the narrative over the nature and treatment of ME/CFS and long Covid. This most recent screed, published last month in the Scandinavian Journal of Primary Health Care, has been written by a group calling itself the Oslo Chronic Fatigue Consortium—a collection of dozens of self-styled “experts” that includes Norway’s Lightning Process queen, Live Landmark. In other words, in this article, these folks have all linked themselves to a woo-woo “mind-body” intervention developed by British osteopath and spiritualist Phil Parker, who has claimed he can “step into other people’s bodies…to assist them in their healing with amazing results.” He also once co-led a course on the use of auras, Tarot cards and related approaches to achieve better health. (I’ve often wondered why, if these modalities were as helpful as claimed, why he bothered to with create the Lightning Process in the first place.)"

https://virology.ws/2023/10/09/tria...nse-from-the-oslo-chronic-fatigue-consortium/
 
mango said:
Ny forskning breddar uppfattningar om kroniska utmattningssyndrom och postcovid-tillstånd
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I discovered that the Karolinska Institutet has also published the news about "new research" on its website. It is the institution where consortium member Mats Lekander works that published it.

https://ki.se/cns/ny-forskning-bred...ka-utmattningssyndrom-och-postcovid-tillstand

EDIT: They have now removed the ”news”.


Short blogpost about it from me:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
 
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On September 18, a seminar on Exhaustion disorder and chronic fatigue was held at Karolinska Institutet Stockholm. ”Dags att tänka om kring utmattningssyndrom: Kan svår trötthet ses som en transdiagnostisk symtomdimension?” (Time to rethink Exhaustion disorder: Can severe fatigue be seen as a transdiagnostic symptom dimension?). Elin Lindsäter and Hans Knoop who are both part of the Oslo Chronic Fatigue Consortium were invited speakers.

Description on Kis webbsite:

”Exhaustion disorder (Swe:utmattningssyndrom) is one of the most common and costly mental disorders in Sweden, responsible for more long-term sickness absence than any other psychiatric or somatic disorder in the country. However, evidence for the validity of the diagnosis is limited and there are no evidence-based treatments. Recent research findings indicate that fatigue, the core symptom of exhaustion disorder, might better be conceptualized as a transdiagnostic symptom dimension rather than a disorder-specific pathophysiology. Fatigue severity across patient groups is primarily explained by transdiagnostic factors and the same moderators and mediators of treatment effect have been found across diagnostic samples.”
https://news.ki.se/calendar/seminar...ostic?pk_vid=0953f679a5d864c61697620658c94a61

The seminar was held in English and can be viewed via this link:
https://www.psykiatriforskning.se/Utbildning/seminarier/

I have made a new forum thread about this problematic seminar here:
https://www.s4me.info/threads/a-call-for-help-regarding-bps-lobby-in-sweden.35746/#post-499106
 
Hans Knoop said:
there are no evidence-based treatments
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And yet this same dude will say otherwise at other times, and has made his entire business model around pretending that there are. So what are they pretending here? That CBT and GET are just a bit helpful? Or making some arbitrary distinction between their made-up concept of exhaustion disorder and what they call chronic fatigue? Because having made everything about fatigue, this is what they have been pretending for decades, that they treat fatigue, even though they obviously never did such a thing.

In a way they are starting to admit some basic truths. Literally some of what we have been saying for decades and quacks like Knoop attacked us for saying, called it harassment. Although obviously he means it in a different way and will always pretend to have always said those things.

This is all really bizarre. It does seem to mark a bit of a shift, but of course Knoop is also fighting the very thing he's saying here with the Oslo op-ed nonsense, fighting NICE, rejecting all criticism of PACE and the lousy evidence base they have been misusing for decades. Like weapons merchants selling to both sides of a war since they win either way. If only it mattered for experts doing such a thing all out in the open. If only it wasn't a fashionable thing to do because the whole politics was biased towards it.
 
rvallee said:
And yet this same dude will say otherwise at other times, and has made his entire business model around pretending that there are.
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It seems to me that they want to skip the diagnosis of utmattningssyndrom altogether and instead just talk about and treat chronic fatigue. Look for similarities between diagnoses rather than differences. What you quote is about the Swedish diagnosis of utmattningssyndrom, for fatigue I think they mean that there is evidence (as usual…).
 
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