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

ME/CFS Skeptic said:
These statements are also quite remarkable:

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"We call for change. Specifically, we propose that doctors and health professionals should feel free to discuss and express different understandings of these illnesses. They should also be free to recommend any evidence-based treatments that offer a realistic hope of improvement and even recovery"
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I don't quite understand the latter: aren't they free to recommend evidence-based treatments?
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Precisely --- unfortunately after that's been repeated to them ad nauseam they still claim to hold the view that they have effective treatments. Crawley (SMILE study - Lightning Process) even dropped the objective (primary) outcomes (school attendance) since they showed no improvement and used the subjective (secondary) outcomes (self-assessment questionnaires) to claim success.
Either, as per Jonathan's comment above, they are incapable of objectively assessing evidence --- I find that hard to believe; or --

Does anyone believe that Crawley et al, as parents, would have their child treated using the Lightning Process and expect success?
 
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Hope someone will submit a commentary or rebuttal. I will not, but wanted to share my initial notes and comments in case these are useful for others to write their comment.

The Oslo Chronic Fatigue Consortium claims to provide an “alternative view” and a “new perspective” on chronic fatigue syndromes, but its statements are nearly identical to what Wessely and colleagues proposed in 1989. Rather than a fresh perspective, it seems to offer old wine in new bottles.

A psychosomatic interpretation has long been the dominant approach to fatigue syndromes until several randomized trials provided contrary evidence. The PACE, FINE, GETSET, FITNET and QURE trials all found no treatment effect at long-term follow-up. A gradual approach to increase activity and cognitive behavioral therapy do not help patients recover or get back to work. To state otherwise, is contrary to the scientific evidence.

Additionally, patients have reported in multiple surveys that graded activity therapy worsens their health. It is strange that the Oslo Chronic Fatigue Consortium does not address this issue as potential harms should be clinicians’ first concern (primum non nocere).

While the consortium states that “the patients’ voice is important” it does not seem to have included anyone who currently has ME/CFS or is a representative of a ME/CFS patient organization. The lack of patient involvement might explain the consortium’s curious claim that “inactivity, isolation, and sensory deprivation” are a coping mechanism rather than the direct consequence of the illness. ME/CFS patients do not experience this as a choice but as an unavoidable constraint that the illness imposes on them.

It is unclear why advocacy groups should promote personal stories of recovery as the consortium suggests. Such stories often attribute improvement to dubious remedies such as food supplements, candida diet, The Lightning Process, craniocervical surgery, or avoidance of microwaves. In contrast, we believe that advocacy groups should focus on evidence-based information.

Chronic fatigue syndromes are more complex than what the Oslo Chronic Fatigue Consortium maintains. Rather than promoting an old hypothesis, we invite the authors to remain open-minded and study these illnesses without preconceptions. The DecodeME-study is an example of an alternative approach that aims to perform a (genome-wide) analysis of ME/CFS without presumptions.​
 
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ME/CFS Skeptic said:
Hope someone will submit a commentary or rebuttal. I will not, but wanted to share my initial notes and comments in case these are useful for others to write their comment.

The Oslo Chronic Fatigue Consortium claims to provide an “alternative view” and a “new perspective” on chronic fatigue syndromes, but its statements are nearly identical to what Wessely and colleagues proposed in 1989. Rather than a fresh perspective, it seems to offer old wine in new bottles.

A psychosomatic interpretation has long been the dominant approach to fatigue syndromes until several randomized trials provided contrary evidence. The PACE, FINE, GETSET, FITNET and QURE trials all found no treatment effect at long-term follow-up. A gradual approach to increase activity and cognitive behavioral therapy do not help patients recover or get back to work. To state otherwise, is contrary to the scientific evidence.

Additionally, patients have reported in multiple surveys that graded activity therapy worsens their health. It is strange that the Oslo Chronic Fatigue Consortium does not address this issue as potential harms should be clinicians’ first concern (primum non nocere).

While the consortium states that “the patients’ voice is important” it does not seem to have included anyone who currently has ME/CFS or is a representative of a ME/CFS patient organization. The lack of patient involvement might explain the consortium’s curious claim that “inactivity, isolation, and sensory deprivation” are a coping mechanism rather than the direct consequence of the illness. ME/CFS patients do not experience this as a choice but as an unavoidable constraint that the illness imposes on them.

It is unclear why advocacy groups should promote personal stories of recovery as the consortium suggests. Such stories often attribute improvement to dubious remedies such as food supplements, candida diet, The Lightning Process, craniocervical surgery, or avoidance of microwaves. In contrast, we believe that advocacy groups should focus on evidence-based information.

Chronic fatigue syndromes are more complex than what the Oslo Chronic Fatigue Consortium maintains. Rather than promoting an old hypothesis, we invite the authors to remain open-minded and study these illnesses without preconceptions. The DecodeME-study is an example of an alternative approach that aims to perform a (genome-wide) analysis of ME/CFS without presumptions.​
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That was excellent, @ME/CFS Skeptic ! :thumbup::thumbup::thumbup:
 
“the patients’ voice is important”

Unless it disagrees with them.

Anybody else getting the sense these guys are in the bargaining phase? Trying to salvage something, anything from their train wreck.

But to strike a bargain you must have something of value to offer the other party.

They got nothing we need or want. There is no bargain to be made.
 
These authors said pwME"...perceive symptoms as threatening...", well, it wouldn't be smart to ignore the threat of imminent fainting if a pwME has POTS, and has been upright long enough that they start to feel faint. Common sense, and self preservation have to come into the picture somewhere. It appears that this is what the BPS'ers are trying to eliminate in pwME, common sense, and the natural human drive for self preservation.
 
ME/CFS Skeptic said:
These statements are also quite remarkable:

"Persistent fatigue also occurs in many other illnesses [7,10–12] and is therefore unlikely to indicate a distinct illness with specific pathology."

"The experience of pain, for example, can arise from expectations based on prior experience, without any neuronal input from peripheral sense organs and influenced by the interplay of biological, psychological, and social factors."

"Those who have improved or recovered through cognitive, behavioural, and stress-reducing strategies can offer special insight into both the experience of illness and the ways out of it. Unfortunately, their personal stories are rarely promoted or represented by advocacy groups as they do not match the ‘incurable physical disease’ narrative."

"We call for change. Specifically, we propose that doctors and health professionals should feel free to discuss and express different understandings of these illnesses. They should also be free to recommend any evidence-based treatments that offer a realistic hope of improvement and even recovery"
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I don't quite understand the latter: aren't they free to recommend evidence-based treatments?
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The last point is, I believe,a veiled reference to the NICE guidelines specific exclusion of LP.
 
Hutan said:
We've seen these papers with a cast of dozens before. It's as if they are doing science by a popularity vote. 'We must be right because we have 51 people who are prepared to put their name to this'. What's a good name for that sort of "science"?

Before anyone suggests, that's a bit 'pot calling the kettle black' from someone involved in trying to effect change by a running a petition, I'd point out that we are only calling for a review that has already been recognised as flawed to be removed, and either progress on a quality review or abandoning the effort. We aren't maligning a whole patient group without evidence and calling it science.

It's interesting how the BPS people seem to be marshalling an army of the "recovered", to, I assume, counteract the growing army of the Long Covid.

I'm not sure how that will work out for them. Yes, there are a lot of people who have recovered.

Most of the recovered will just be pleased to be functioning again and won't have much interest in being part of a campaign. Perhaps some will want to believe that their superior personality or some supplement mixture that they have a trademark on is responsible for them recovering and will want to tell the world.

But, some of those NHS doctors with Long Covid seem pretty fired up. I think I'd back an army of them against an army that mostly doesn't even know it's in the fight.
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Thank you @Hutan, for the "NHS doctors with Long Covid article. Their descriptions and experiences of medical and institutional mistreatment are of course all very familiar to me, and doubtless millions of pwME.

For some of these doctors, these experiences will be new. An unfortunate way to learn about how patients with controversial diseases are treated. I don't know if they will be able to accomplish much change in attitudes and systems, but hopefully that will be the case somewhere down the line.
 
Midnattsol said:
I'm so sick of them turning associative learning on its head. In the beginning people don't expect to feel ill after any activity, we learn exertion causes us to crash. Not the other way around as they keep proposing.


This reminds me of posting an image of a very summery early spring day in Bergen; green grass, clear blue sky, brilliant sun... and having a family member in Tromsø reply with an image of the heap of snow outside their building that was three times as high as her :rofl:
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Yes, in the beginning, pwME do activities, not expecting negative repercussions.

With experience, we learn that exertion may cause post exertional symptom increases.

However, there are still activities of daily living that pwME have to do, or choose to do, despite exertion causing symptom increases.
 
Trish said:
Google translate has failed me on this one.
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I am surprised at the deficiency of your religious and musical (Walton) education, Trish! But each to their own.

Aramaic: Thou hast been weighed in the balance and found wanting. (Somehow it also means all your chattels will be sent to the Medes and Persians.)

No real need to translate though.

It is commonly known as The Writing on The Wall.
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