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

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?

 

The simple and terrible truth for these poor people can be found in the bible:

Mene, mene, tekel upharsin.

 

I bloody well hope so!

 

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.​

 

https://en.wikipedia.org/wiki/Belshazzar's_feast

eta:
"None of the Chaldean wise men are able to even read, let alone interpret, the writing on the wall"

 

That was excellent, @ME/CFS Skeptic !

 

The patient's voice is important they said, while opposing and misrepresenting the majority patient voice.

 

Does saying this make the patients less difficult? What proportion of them ask for the evidence?

 

It's from Daniel, about God having numbered the days of your kingdom.

 

Apologies if already posted:
Oslo Chronic Fatigue Consortium Offers a Fresh Perspective on Chronic Fatigue Syndromes and Post-Covid Conditions
https://kommunikasjon.ntb.no/pressemelding/18001364/oslo-chronic-fatigue-consortium-offers-a-fresh-perspective-on-chronic-fatigue-syndromes-and-post-covid-conditions?publisherId=7860342

 

I hope journalists realise that there's no news in this press release

 

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.

 

Assessed & found to have failed --- by NICE --- nice one Jonathan.

 

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.

 

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.

 

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.