News from Scandinavia

Maybe Sharpe thinks LP adds evidence in support of the cognitive-behavioural model of CFS.
Ironically, it destroys one their very last remaining argument about some "special sauce" that only they know, that anyone harmed by such treatment simply didn't get the proper treatment that they carefully crafted (aka made it all up). They have to certify the training, supervise it even, because it's just so super special. At least that's what they say, nevermind that they recognized in PACE that this could not scale up and that it fails everywhere no matter what, including in their own fake clinics.

If some random jackass who claims he can diagnose people with hover hands and tarot cards puts out his STOP mat and roughly accomplishes the same cherry-picked heavily-biased self-reported outcome, then the PACE treatment they invented, and allegedly was a big part of why PACE was so expensive, is no more credible than just yelling at your symptoms.

So in the spirit of a famous quip: please proceed, professor.
 
Another version is something like this:

“Well I don’t know if this works for everyone or anyone, but at least these patients are willing to do something about their situation and listen to professional advice. That’s what’s most important here!”
 
MillionsMissing Stavanger is fundraising for their May 12th event and for research into ME by Fluge/Mella and their team. The fundraising will be going until May 12th. There's a webpage at bidra.no where people can contribute via card donations and Vipps. The event at May 12th is already mostly fully financed, so a support to this fundraising will mainly be a support to Fluge/Mella's research work.

https://www.bidra.no/prosjekt/aksjo...wKVtp_Oul6-i7nCgrBPMPu7dq4bGUScIfe6ytIVBBk27k
 
I haven’t read the whole thread but I think my doctors work should get some time in the spotlight. I’m a patient at the Bragee me-center in Stockholm run by dr Björn Bragee. He and his coworker dr bo bertilsson presents their work here:

It’s mostly in Swedish but I think the slides are in English.
They have worked with me-patients only for a short while but Claim to see common features eg hyper mobility, “crowded cervical junction” etc.
 
I think my doctors work should get some time in the spotlight. I’m a patient at the Bragee me-center in Stockholm run by dr Björn Bragee. He and his coworker dr bo bertilsson presents their work
They have worked with me-patients only for a short while but Claim to see common features eg hyper mobility, “crowded cervical junction” etc.

This looks like dangerous nonsense to me, I am afraid. Variations on this story have been going for decades and have no basis that I know of. There is a lot of overlap with somatisation talk from bps. The evidence looks as bad as the bps stuff and neck surgery is almost certainly more dangerous than GET.

This looks like surgeons selling operations to me. People with good reasons for neck surgery may benefit but fm is not a good reason and me/cfs is cetainly not.
 
This looks like dangerous nonsense to me, I am afraid. Variations on this story have been going for decades and have no basis that I know of. There is a lot of overlap with somatisation talk from bps. The evidence looks as bad as the bps stuff and neck surgery is almost certainly more dangerous than GET.

This looks like surgeons selling operations to me. People with good reasons for neck surgery may benefit but fm is not a good reason and me/cfs is cetainly not.
You don’t think that perhaps a subset of me/cfs patients could have these problems?
I think they talk about this in the presentation:
https://www.ncbi.nlm.nih.gov/m/pubmed/29391028/
 
You don’t think that perhaps a subset of me/cfs patients could have these problems?
I think they talk about this in the presentation:
https://www.ncbi.nlm.nih.gov/m/pubmed/29391028/

I don't know of any evidence for people with me having neck problems more than anyone else. The doctor in the video is talking in a standard pseudoscientific way. Real medical science does not sound like that.

These myths go round and round between doctors who don't understand how to collect reliable data. There is no overlap between me and cervical myelopathy.
 
Article from a local newspaper in Sweden about a mother and a father who are caring for their severely ill ME sick daughter.

The article described well the severity of their situation and their desperate fight for help.

Hallandsposten: De står maktlösa inför det fängelse som ME har skapat
google translation: They stand powerless before the prison that ME has created

As a parent, to see your 18-year-old child totally isolated from the outside world is painful, but in addition comes the powerlessness before the physical pain she is forced to endure.

- Sometimes she gets a headache that is so strong that she almost looses her consciousness. She describes it as "the brain presses," says Kalle, and tells about the months when he and Lotta changed on watching their daughter all her waking time - terrified that she would suddenly have a seizure with symptoms that resembled unconsciousness.

- She got stiff in every muscle and we couldn't communicate with her.When it happened in January, I panicked and called 112 to ask what to do. They wanted to send an ambulance, and didn't understand at all when I said "no, she can't do that!", Says Lotta and continues:

- Going to the emergency room and being examined by a whole battery of people, would mean so much impression that her condition would be severely impaired for several weeks. I understand that it sounds strange to those who do not know ME - and unfortunately not everyone in the health care does.
 
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Interview with Karin Alvtegen. She is a famous Swedish crime fiction author who suffers from ME. She's been open about her experiences and recently publis
Excellent feature on ME on Swedish TV this morning, on the show Malou efter Tio. Interviews with Karin Alvtegen -- pwME and arguably one of Scandinavia's most widely read award-winning authors -- and her doctor Anna Lindquist (Stora Sköndal ME/CFS-mottagning).

Available to watch online for 30 days from today, but geoblocked outside of Sweden.
https://www.tv4play.se/program/malou-efter-tio/11976335

Tomorrow is the release day for Alvtegen's new book "Osynligt sjuk" (Invisibly ill), written by award-winning journalist/author Karin Thunberg, with contributions by dr David Tuller, prof Jonas Bergquist and others. It's non-fiction, about Alvtegen and what life with ME is like for her, as well as facts about ME, interviews with her family members etc.

I'm looking forward to reading the book.
Another interview with Karin Alvtegen.

allas: Karin Alvtegen har ME - berättar om sjukdomen
google translation: Karin Alvtegen has ME - tells about the disease

- This is a medical scandal! Although the diagnosis of ME has been in existence since 1969 according to WHO, only a few places in the country have accumulated knowledge and expertise. Severe ME patients are seen as hypochondriacs and many doctors are at best ignorant and worst case uninterested, says Karin, who must take a deep breath to calm down.
 
Interview with Karin Alvtegen. [...] Severe ME patients are seen as hypochondriacs and many doctors are at best ignorant and worst case uninterested, says Karin, who must take a deep breath to calm down.
I'd just like to add that disinterest isn't actually worst case scenario, though. Similar things that happen in UK and other countries happen here in Sweden too, like for example children being removed from their families and/or forced to undergo harmful bps "treatments", adult patients being sectioned or otherwise coerced to undergo bps/psychiatric "treament" etc. :cry::mad::wtf:
 
Swedish Dagens Medicin has written about the OMF research collaboration in Uppsala. The article is short and not spectacular but it is somehow spectacular that this magazine reports on it, since they have a history of ignoring biomedical research news about ME. https://www.dagensmedicin.se/artiklar/2019/04/08/satsning-pa-me-forskning-i-uppsala/

Also note it's sorted under 'neurology' - wonder if that is that new?

I think it's rather good actually, even if it's short. Mentioning an Uppsala professor working with Stanford and Harvard is the main signaling effect here, to health professionals, I think:

The Open Medicine Foundation already finances two research centers linked to Stanford and Harvard university in the United States. The Swedish platform will cooperate with both of these.
 
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A new Aftenposten piece.

https://www.aftenposten.no/meninger...-ME-pasientenes-beste--Ni-leger-og-psykologer

via google translate:

We only want the ME patients best! | Nine doctors and psychologists
The ME Association's aggressive rhetoric helps train research that could create better understanding of ME in a biopsychosocial perspective.Debate

Nine doctors and psychologists
April 8, 2019 20:00 8:37 p.m.
In a post in Aftenposten April 3, " When the ME-sick are blamed ", Olav Osland and Bjørn K. Getz Wold in Norway's ME-association comment on Aftenposten March 25 by clinic director Erik Borge Skei, " ME research under patient pressure ».

If the ME sick have "blamed" for the Research Council's distribution of funds, a definition question is. The Research Council is solely responsible for where the money goes and thus also blame if something goes wrong.

Skei believes that it has actually gone wrong, and that this must be seen in light of the ME association's activities and strong influence. To flag our point of view, we agree with Skei, but this comment is primarily about the ME's rhetoric.

Stress and bodily symptoms
Both in the post of April 3 and a number of other posts and writings, the ME association formulates as if we who disagree with them in causal explanation and treatment arrangements, have evil intentions, that we know that our views and recommendations will harm the patients, but still run on.

"We," in this context, are a heterogeneous group that, based on heavy research, broad experience and innumerable testimonies from patients, believe that there is a solid basis for chronic stress to manifest itself in bodily symptoms, including chronic fatigue, and that treatment of the chronic stress level can dampen the bodily consequences. Neither we nor any of our opinionators have other motives than wanting as many as possible to get treatment.

Thought and behavior therapy
Reversing the bodily rash of chronic stress is not easy. These are physiological processes that involve both the hormone balance, the central nervous system and the immune system. We understand that it can be difficult to realize that thinking and behavior processing can affect such systems, but the evidence that the psyche and soma cannot be separated and that both are interacting with the environment has given rise to a biopsychosocial disease concept.

The ME's strong opposition to treating ME with thought and behavior therapy (cognitive techniques) must be understood in light of a historically rooted notion of body and soul as two completely separate spheres of man. This, in turn, has contributed to the fact that illness associated with the psyche has been perceived as second-rate and something that one must take responsibility for. A biopsychosocial model rejects such a vision. If there is something in Osland and Getz Wold's claim for a "paradigm shift for ME", we believe it is moving towards the development of the biopsychosocial model.

Aggressive rhetoric
We hope the ME association in the future will stop mentioning us who also believe in cognitive approach, as if we really want the patients to hurt. There is no purpose in beating each other with research results: We, of course, believe that we have much better foundation for our perception than the ME association has for its and vice versa.

But that's not the point. The point, on the other hand, is that it is horribly sad that the ME Association through aggressive and partly offensive rhetoric disputes its intentions of opinion opponents and helps train research that could create better understanding of ME in a biopsychosocial perspective. Although patient involvement is one of today's mantras, we are very skeptical of the influence the ME association seems to have had on decision-making in the Research Council.

Georg Espolin Johnson, play in Nav

Maria Pedersen, Dr. med, Child and Youth Department, Vestre Viken HF

Gunvor Launes, psychiatrist, Kristiansand

Sven Conradi, doctor, Sunnaas hospital

Nina Andresen, psychologist, Nav

Lina Linnestad, specialist in general medicine, general practitioner and military doctor

Jon Sundal, Senior Consultant, Health Stavanger HF

Maria Leer-Salvesen, neuropsychologist

Ruth Foseide Thorkildsen, specialist in internal medicine

LOL at this: "We understand that it can be difficult to realize that thinking and behavior processing can affect such systems..."

That's pretty hilariously smug considering how badly they've misunderstood the controversy. Nina Anderson is the only name I recognised, and she has come out with similar things previously.

They say "this comment is primarily about the ME [association]'s rhetoric", but then they fail to quote any problematic rhetoric.

They say "Both in the post of April 3 and a number of other posts and writings, the ME association formulates as if we who disagree with them in causal explanation and treatment arrangements, have evil intentions, that we know that our views and recommendations will harm the patients, but still run on." It would have been useful if they could have quoted the section where the ME association did this, as I just had a quick look through the April 3 post and could see no accusations of evil intentions.
 
No, because there has never been any:rolleyes: It’s the usual BS.

I saw you mention Nina Anderson in this post - was a copy of that presentation posted on-line?

No, but I'll tell you anyway!

View attachment 6602

What "planet" is the patient on?

From a presentation by Nina Andersen (psychologist) during a CFS/ME course for physiotherapists. Refers to patients being either optimistic, wanting to get well and doing what they're told (CBT, GET, LP, etc.) or being stuck in 'sickness mode', not taking responsibility for their health and typically members of MEA. By accident it was published online, where someone came across it and had the sense to download it.
 
I saw you mention Nina Anderson in this post - was a copy of that presentation posted on-line?

Yes, by accident! Some sort of web service that archives presentations saved it, where a Norwegian journalist (who has actually realized that the ME-patients are right) discovered it by chance.

She downloaded it, and a few patients too once she tweeted about it I think, before they realized the mistake and asked for it to be removed from the archive.
 
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