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

They want to hear from patients who have recovered?

I recovered after a 3 year bout of mild/moderate M.E., by resting as necessary and not challenging my body until it apparently healed itself. I was well for 7 years and then had a nasty relapse and am in my 7th year of moderate/severe.

Do you think they want to hear from me? I don't hold with any of their nonsense so I suspect not!

 

Why is this nonsense being presented as scientific explanation? That's just a vague speculation. The references have barely anything to do with ME/CFS.

 

The ‘Oslo Climate Consortium’ consists of influencers and businessmen who question the current narrative that climate changes, including worldwide forest fires, are incurable processes. Instead, we propose an alternative view, based on what Henrik's dad said (he knows because a Norwegian friend of his in Tromso says there is still tons of snow there), which offers more hope to people. 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 (like Facebook or government enquiries maybe), rather than a specific climate process.

Possible causes include persistent activation of the neurobiological stress response, accompanied by associated changes in immunological, hormonal, cognitive and behavioural domains. (But we're just bullshitting really.)

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 reducing fossil fuel burning and cutting down trees. Instead, we propose that recovery is often possible if people are helped to adopt a less threatening understanding of their house burning down or being flooded 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 Henrik's dad's friend who still flies a private jet so has no hassle.

 

I loved the phrase 'based on research'. How can it not have occurred to people like Garner, Sharpe, Chalder, Floptop, that to academic community a phrase like this will sound pretty much like 'my dad said'.

 

We engage in these practices for no reason, no reason at all. Just decided one morning, fuck it, I’m going to spend the rest of my life in my bedroom with the curtains closed.

 

Interesting, at least to me, how few UK based folk have signed on to this.

Aarhus University Hospital (where Fink is based) website has an 'announcement' about this. Archive link, https://web.archive.org/web/2023092...archive/2023/oslo-chronic-fatigue-consortium/

 

They write (my bolding):

"As a Consortium of researchers, academics, and clinicians interested in the causes and treatments of fatigue and fatigue related conditions, as well as representatives of patients who have suffered from these illnesses themselves, we propose that a different narrative also needs to be heard."
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It is not so clear who of the authors is a representative of ME/CFS patients. Do they mean Henrik Vogt?

 

They also write:

"By contrast, the approach often recommended by the public narrative of inactivity, isolation, and sensory deprivation, risks worsening symptoms and associated disability."
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I wonder who they think is recommending isolation and sensory deprivation. These are not viewed as coping mechanism (a choice) but something that the illness forces onto patients.

 

no mention of harms?

conclusive evidence of recovery without fiddling the results?

talk about echo chamber. Do they ever listen to patients, or read other research, reviews,reports other than their own? (looking at the citations, nah).

 

Vogt suffered from tinnitus, and I think he thinks that's relevant because he regards both tinnitus and ME as under the same umbrella. LP coach Live Landmark was diagnosed with ME but says in her talk about LP that the method gave her a choice of either having an incurable disease or a stress related condition she could do something about.

ETA: Vogt is no longer leader of Recovery Norge, but I guess he can still claim he represents the members?

 

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?

 

Thanks. But it seems that the conference does not include anyone who currently has ME/CFS or who is a representative of a ME/CFS patient organisation?

 

Thing of beauty Jonathan - thanks! It really deserves a wider audience.
"The ‘Oslo Climate Consortium’ consists of influencers---

 

I assume also Garner is included as a representative of patients. But other than Vogt being a member of Recovery Norge, then no, you are right, no current ME/CFS sufferers or patient organisations included.

 

write up of the paper from Oslo University (in english):
Oslo Chronic Fatigue Consortium Offers a Fresh Perspective on Chronic Fatigue Syndromes and Post-Covid Conditions

https://kommunikasjon.ntb.no/presse...and-post-covid-conditions?publisherId=7860342

eta: 'fresh perspective'

eta2 also Aarhus University Hospital
https://www.en.auh.dk/news/news-archive/2023/oslo-chronic-fatigue-consortium/