the horrible Oslo Paper.

[SWAlexander]

I´m very glad that so many people on Twitter with different backgrounds stood up against Paul Garner who stated:
"Real illnesses that people can recover from". Top people in the field in chronic fatigue and post-covid conditions. Current dominant narrative of "incurable disease" itself harms people. #MECFS #LongCovid

It is about:

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

 

[SWAlexander]

This Oslo paper reminded me of a psychologist from Venice CA. He believed that in primal therapy a client can go back to before birth and de-methylate faulty genes.

 

[Andryr]

We need a biomarker to end these speculations. I understand where a bullshit like this comes from. No biomarker -so it's all in your head. Nothing new, but this time in scientific jargon.

 

[Mary]

@SWAlexander - I love the title of this thread - it is truly a HORRIBLE PAPER! Here are some highlights:

While acknowledging the reality of the symptoms associated with these conditions, the consortium suggests that they likely stem from the complex interplay of biological, psychological, and social factors, rather than a singular disease process. Potential contributing factors include the enduring activation of the neurobiological stress response, accompanied by corresponding changes in immunological, hormonal, cognitive, and behavioral domains.

Furthermore, the consortium posits that symptoms are more likely to persist when perceived as threatening, leading to the avoidance of activities believed to exacerbate them. They also question the conventional approach of prolonged rest, social isolation, and sensory deprivation as the best coping strategy. Instead, they advocate for a path to recovery that involves helping patients develop a less threatening understanding of their symptoms and supporting their gradual return to normal activities.

I don't know what to say - they're doing a lot of positing and suggesting, with nothing to back them up, ignoring all research and patients' experience. It's insane, they're insane.

 

[Rufous McKinney]

it's all in your head. Nothing new, but this time in scientific jargon.

so now I have a lymphoma diagnosis....from people who got PHDs.

I suppose thats a psychosomatic condition as well, right?

 

[Rufous McKinney]

He believed that in primal therapy a client can go back to before birth and de-methylate faulty genes.

the family member who offered me St. John's Wort, (since clearly, I'm a depressed person with numb feet and a loose joints)...has since decided I need to meet the local Iridologist. He will be able to identify whats wrong with me, and since he is a vegan, he will also have all kinds of opinions about what food I should consume.

Oh? well FORGET THAT.

(and yes I actually do believe there IS a way to look at the iris and correlate it with conditions in the body- but most people don't know a thing about HOW they'd do that).

Been vegan, done that.

 

[Rufous McKinney]

It's insane, they're insane.

Yup.

Last night I discovered yet the latest in Child Development. (its from the 1980s, where have I been?)

It seems this same SCHOOL of psychology types, decided to invent the following:

Pathological Demand Avoidance​

and they've announced its linked to Autism, only its not but it is.....

https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/pda


Did you know the every day activities are demanding? And that some children decide they dont like all these demands?

This label is now being applied to my Granddaughter.

My grandaughter is not pathological anything.

so per their logic, our whole group are PDA.....after all, being well is demanding.

 

[Rufous McKinney]

So a whole SOCIETY exists for PDA in the UK (I haven't checked OSLO yet)

https://www.pdasociety.org.uk/

The PDA Society is led and run by a small team, all of whom have a personal connection with PDA. We provide information, support and training about PDA for individuals, families and professionals. We aim to increase acceptance and understanding of a PDA profile and to improve outcomes for individuals and families by focusing everyone involved on ‘what helps’. These aims are underpinned by our 5 year strategy. The PDA panda is our ambassador because, just like giant pandas, PDA individuals need specific support in order to thrive.



oh: we are just like Giant Pandas

 

[Rufous McKinney]

This person "developed" the concept of PDA:

The term was proposed in 1980 by the UK child psychologist Elizabeth Ann Newson. PDA is observed in adults as well.

edit: found this:

Discussion of PDA has been confined mostly to the U.K. With social media dissolving international borders, though, people in the United States are gaining awareness of the concept.

 

[Rufous McKinney]

it is truly a HORRIBLE PAPER!

did you notice Key Point # 5?

The Conditions can be understood: The symptoms of these illnesses can be understood as adaptive responses evolved through evolution to keep us safe by signalling issues like tissue damage and resource depletion.


- so we should IGNORE body messages indicating we may be damaging tissue, organs or depleting resources too much.

 

[Mary]

@Rufous McKinney - everything I read was truly horrible, but didn't want to quote it all!

 

[Rufous McKinney]

Current dominant narrative of "incurable disease" itself harms people.

I don't think of ME as an incurable disease. No doctor has ever said that to me.

The dominant narrative is we do not yet know how to treat this debilitating condition. So if that is what they mean by incurable, you'd think they'd lobby for more effort to FIND CURES.

 

[Viala]

the consortium suggests that they likely

the consortium posits that symptoms are more likely

@Mary: It's pure speculation based on something being 'likely', that's not science. I can draw ten different conclusions like that out of thin air.

 

[Countrygirl]

And they have ensured it is published in the paper! (I think it is The Independent, judging by the name of the reporter.) Note that they describe themselves as 'experts'.

 

[Mary]

Wow - now we no longer even have "chronic fatigue syndrome" as our own, no matter how horrible a name but at least it was ours and was some sort of a starting point - now it's just "chronic fatigue syndromes", lump everything together and fix us all by voodoo. I never thought it would get this bad once more research was forthcoming and the CDC changed its tune, etc. It feels surreal.

I think it would be good to write to the Independent about this. It's just there's so much to say, how do you distill it down into a few sentences?

 

[BrightCandle]

Its getting wall to wall coverage in the press. The BPS cabal has always had a great link with the press for pushing its nonsense going back decades. Its nothing new we just got used to there being some real research money and the NICE guidelines seemed to have had the BPS lot in retreat. But now the money is drying up for research as countries have pulled Long Covid funding we should expect things to return to the historical normal with the BPS groups once again dominating the research and treatment agenda.

 

[Viala]

Do you guys also think this is getting weird that they are trying so hard to discredit this disease? There's too much misinformation.

 

[SWAlexander]

This paper has steered up quite some response, and rightfully so.

https://twitter.com/i/web/status/1706024442927689847

 

[Countrygirl]

They are also spreading the same manipulative, dishonest and harmful information to the local media outlets. This is a typical article that is circulating:
https://www.walesonline.co.uk/news/uk-news/new-hope-incurable-disease-leaves-27783441

 

[Rufous McKinney]

chronic fatigue syndromes

now its plural?