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

Scandinavian Journal of Primary Health Care
By The Oslo Chronic Fatigue Consortium

Chronic fatigue syndromes: real illnesses that people can recover from

Abstract:

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. Instead, we propose an alternative view, based on research, which offers more hope to patients. 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.

Possible causes include persistent activation of the neurobiological stress response, accompanied by associated changes in immunological, hormonal, cognitive and behavioural domains.

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.

We also question the idea that the best way to cope with the illness is by prolonged rest, social isolation, and sensory deprivation.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.

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.

 

This consists of names including Asprusten, Brurberg, Chalder, Fink, Flottorp, Fors, Garner, Knoop, Landmark, Reme, Sharpe, Vogt, Wyller and more

 

Lolno. I'm not afraid of giving myself PEM because I haven't got LTSE, I've done tons of things I wanted to do that gave me PE., and I've remained severely ill with what they call "mild" ME for 5 years now.

 

The same people, pushing the same trash, with the same minimal degree of evidence, using the argument that we should give their nonsensical screeds the same weight as biomedical science in the name of "openness". Nothing new here, move along.

 

They write "It is time for another perspective", but then repeat the same old dogma that has never worked when reasonable standards of evidence are applied.

It feels like the authors are asking us to validate the comforting lie they have chosen to believe.

Patients don't behave the way they do for no good reason. It brings us no pleasure to suffer inactivity, social isolation, and deprivation from so many good things. We just can't bear normal activity and stimulation. It's a long hard road to accept this unpleasant reality. The authors instead are letting themselves go to a comforting lie.

It also makes me curious what kind of problems these people have in their own lives. They should do some introspection and strive for some more maturity instead of spending time publishing articles where they misexplain the illness to people living with it. Maybe overcome their own fear of admitting the existence of chronic untreatable health problems?

 

It rather makes a mockery of the suggestion that Brurberg, Floptop and Garner are Independent Experts on Evidence Assessment.

I wonder how much this Consortium charges for its services?

 

lol i love the way they position themselves as 'questioning the current narrative', what a joke!
they are the ones who wrote the 'current narrative' - which is that all symptoms are reversible with CBT & GEt

thats been the narrative for a couple/3 decades and is as strong now as it ever was afaics!

They are the doinant establishment not the 'questioners'.

 

This could be caused by the internet sites I frequent, but from my point of view there seems to be nothing but BPS and hysteria on offer these days. Of course it isn't called hysteria, but that is what is meant.

 

Doesn’t look like the journal takes e-letters unfortunately

And it’s all open access with a fee it seems

https://www.tandfonline.com/action/authorSubmission?show=instructions&journalCode=ipri20


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Peddling the same old, same old mumbo jumbo and presenting this as 'hope' is horrid.

Patients 'perceive' their symptoms as threatening. I mean come on. Seriously

"we call for a much more open and constructive dialogue" Who has been avoiding any such for decades? I wonder who.... (sarcasm off).

 

Does this mean you can stump up the sum and publish any old ....... ?

 

These people don't have a freaking clue. They just write the same nonsense over and over again.

And, no, they don't believe that the "symptoms are real". They mean something else entirely, some BS about fear or whatever. The same crap peddled for over a century.

It's fanatics like this that give medicine a bad name and ruined the credibility of the profession. Get lost, boring quacks.

 

It's also remarkable how they either just don't pay attention to reality, or simply don't care.

We've had 3.5 years of Long Covid. It's obvious that most recover early on. But past 6 months, an arbitrary time that was always disputed as important by the patient community, it becomes very rare. So this is how the false perception has developed. Because of them. Because of their complete incompetence. And actually it looks more like 3 months, which is what the update NICE guidelines used, and which they dispute because they have this talent for always being wrong.

Looking into what is happening to those with Long Covid who fit the ME/CFS subtype, we can clearly see that remissions and recoveries happen. 3 months is not some magical threshold where one illness becomes another. Recovery is the norm, but it usually happens early on for reasons that are very relevant to the cause, pathology and treatment.

Same with those who don't have PEM but feature significant dysautonomia. So do relapses. Relapses are common, weeks or even months after what seemed to be full recovery. Often worse than before, and nothing that hasn't been reported for decades. People who then got back to their old routines. Some have testified of being stuck at 90-95%, sometimes for months. Some have relapsed. Some have stuck there. Some have dropped off, possibly dead.

But in the whole community, one thing you won't find is any hope or respect for what these charlatans and clinicians are doing in general. No one in the LC community looks up to medicine for answers. There is hope for basic research paving the way, but almost everyone knows, understands and communicates the fact that remissions and recoveries are a matter of chance.

No one knows what factors play the biggest role, other than PEM and the very real harm of exertion. As a huge community, long haulers have tried everything, and no effective treatment has come out of it. If anything, holding on to hope has been the big thing in the last year. Keeping a strong mindset, not giving up. Especially when the desperate ones come out and cry for help. It's the dominant message lately. Everything these charlatans are selling, it's all there, at least in terms of attitude, certainly the opposite when it comes to exertion, and they either don't know or don't care.

But they pay no attention to the outside world. They only look inward, at what they think and believe, at what they have been saying and promising for decades, at what's good for them and them alone. Which is the same crap as here. The failed dominant paradigm, which they bizarrely claim to be challenging. Which is either delusional, or just insane level of pathological lying. Or simply being completely full of shit and not caring about anything but themselves. This may as well be oil company executives writing about their novel idea of basing our entire economies on oil. What a bunch of absurd nonsense.

But this story is on full display, there are millions of testimonies of this. It's easy to find, but they are either too lazy or too indifferent to do any of it. Or maybe just pretend that the overlap with Long Covid is not significant, which they know is BS as they went for the money and have made the same lies yet again. Instead they just peddle the same nonsense yet again, the same way as they've always done. Even though it's failed miserably.

Worse than everything I'm so sick of their constant lying. Their words are completely worthless, these people have no honor.

 

Cartel would be more fitting than consortium at this point. They’re way past the threshold of vicious competition anyway. Imagine studying and researching a whole career, only to achieve a perfect display of what is so carefully described in the literature that shapes their profession as psychologists… The more the field of ME progresses, the more wrong they are, the deeper they dig themselves in. Truth is sacrificed at the altar of the ego. The fun part is that this exact behavior is so well characterized in every book on decision making. The assertion that psychology applies to everyone except the psychologist is just another holy paradox, hinged upon belief, and nonsensical to a non-believer. Why can’t they just build in to their models source and receiver signatures like other reputable scientists? Unbelievable!

 

After spluttering in impotent fury for years over the religious tenacity of these people who seem to have no insight into their own stuck beliefs, I happened to find this article which explains it, to me at least. Why these influential psychologists, of all people, do not question their own beliefs as a matter of course when they do their research etc. is frankly outrageous.

https://www.psychologytoday.com/us/...tually-is-belief-and-why-is-it-so-hard-change

 

exactly. they've lost control of the narrative and they want it back, which is understandable. but it was their narrative for decades and it produced nothing.