News from Scandinavia

This Bragee center or clinic seems like a major setback, yes. Thought Sweden was kind of improving and getting there, but..? This Stora Sköndal, just to actually have a special clinic at all, is something many other countries envy. Then you have the likes of Bergquist working around the clock, but still, last couple of years seems like a turn in the wrong direction. Guess that don’t differ a whole lot from the rest of the world?

It seems that increased interest and attention, maybe increased funding?, more knowledge and awareness fuels the anti science and (dirty) tricks of the BPS’ers turbo style. That’s not really surprising, but it’s scary if they actually manage to slow down much needed progress even more. That is sort of the feeling last couple of years, but I suppose the good news is that it is just a feeling. At the positive side, the ones working rigorously, with curiosity, free of ideology and a real interest of finding out what the h... is going on, well they work in a much more calm and elegant way. That is always reassuring when the noise gets to loud. Science will produce data that certainly silence the noise and vulgar buzz of pseudoscience. But it sure takes time!

I find the statements of Bragee about ME-patients (who’s is ME patients in his eyes?) unprofessional and quite disgusting. It says it all, the total lack of knowledge, the ignorance and attitudes. But it’s good to have it out in the open. ME-patients have every reason in the world to be depressed reading those statements and dealing with the likes of Bragee, but guess what, that is just the opposite of what the clinical picture and science is telling us. But I guess Bragee don’t care much for science.
 
I stumbled upon the website CRISTIN - Current Research Information System In Norway.

This is the list of the research projects that turns up when using the search word "CFS/ME".
https://app.cristin.no/search.jsf?t=CFS/ME&type=project

I've divided the projects into biomedical and psychosocial/biopsychosocial based on the short description of each project (and might have gotten some wrong). I have translated the titles into English (so the wording might be a bit clumsy).

Some projects have status as finished, but I don't know if that means they've been published or will get published.

Biomedical
  • Cyclophosphamide with myalgic encephalopathy/chronic fatigue syndrome - Øystein Fluge - Haukeland University Hospital (active)
  • Fecal transplantation with CFS/ME - a randomised controlled study - Rasmus Goll - University Hospital of North Norway (active)
  • Postanaesthetic Outcome and Assessment of Fatigue - Johan Ræder - Telemark Hospital (finished)
  • Auto antibodies in chronic fatigue syndrome (ME) - Tor Lea - Norwegian University of Life Sciences (finished)
  • Immunology and genetics in myalgic encephalopathy - Benedicte Alexandra Lie - Oslo University Hospital - (active)
  • Biomarkers, metabolite changes and mucous membran immune responses with post giardiasis irritable bowel syndrome and chronic fatigue syndrome - Kurt Hanevik - Haukeland University Hospital - (active)

Psychosocial/biopsychosocial
  • CFS/ME, immunological and psychiatric factors - Solveig Merete Klæbo Reitan - National competence service for patients with complex ailments at St. Olavs Hospital (finished)
  • Follow-up of patients with ME/CFS - Elin Bolle Strand - Oslo University Hospital (active)
  • The signification of the training method lightening process for patients diagnosed with CFS/ME - Bodil Furnes - Stavanger University (finished)
  • How and what do patients with ME/CFS tell about their improvement experiences? - Karen Synne Groven - OsloMet (active)
  • CFS/ME in North - a pilot for a follow-up study - Kjersti Lillevoll - University of Tromsø (active)
  • A comparative study between chronic fatigue syndrome (CFS/ME) and chronic, general pain (CWP) - Egil A. Fors - St. Olavs Hospital (finished)
  • Body awareness, pain, fatigue and mindfulness in children with and without CFS/ME - Silje Andresen Reme - Oslo University (active)
  • CFS/ME and Fibromyalgia, comparison of immunsystem and psychiatric conditions compared with health controls - Solveig Merete Klæbo Reitan - St. Olavs Hospital (finished)
  • Cortisol measurement and stress - validation of measure methods in a cohort of CFS/ME patients and healthy controls - Elin Bolle Strand - Oslo University Hospital (finished)
  • Illness/symptoms characterisations and psychosocial factors - description and comparison of CFS/ME patients and healthy controls - Elin Bolle Strand - Oslo University Hospital (active)
  • Project plan for systematic literature search with grading of primary studies about causes of chronic fatigue syndrome CFS/ME - Lillebeth Larun - The Norwegian Institute of Public Health (active)
  • Causation, Complexity and Evidence in Health Sciences - Rani Lill Anjum - Norwegian University of Life Sciences (finished)
  • Biopsychological treatment of chronic fatigue syndrome - Vegard Bruun Wyller - Akershus University Hospital (finished)
  • Recovery processes in patients with chronic fatigue syndrome - Målfrid Råheim - University in Bergen (finished)

Other/not sure of characterisation
  • Individuals and families suffering from CFS/ME. Population characteristics, use of service and needs - Thomas Halvorsen - SINTEF AS (active)
  • Policlinical rehabilitation in group with chronic fatigue syndrome (CFS/ME) and changes in health, functional level, quality of life and mastering - Kristin Østlid - Sykehuset Innlandet - (finished)
  • Health and health related quality of life in adolescents with chronic fatigue syndrome - Torstein Baade Rø - St. Olavs Hospital and Oslo University Hospital - (finished)
  • Chronic fatigue syndrome/myalgic encephalopathy, a randomised and controlled study to measure effect of treatment - Anika Jordbru - Vestfold Hospital - (Active)
 
Last edited:
Are there available resources in Finland, a reliable patient organization perhaps, for yet another patient being held in a psychiatric unit against their will?



Yet another example of the negative consequences of the psychosocial model, that any contact with medical professionals is a huge risk that can lead to being detained for being sick, under the guise of some imagined "exercise phobia".
 
Peter said:
But I guess Bragee don’t care much for science.
Click to expand...
You're quite right!
He's not a man of science in any way, shape or form. It's all about fame, glory and being in the limelight for him.
At his age (he's a bit over 70) one would have hoped retiring would be tempting, but no.

Instead he decides to "summarize a life of hypotheses and intuition to a scientific work on backgrounds for diffuse conditions such as ME / CFS and chronic pain", and become a research undergraduate...
(it's actually his own words, from his presentation on KI'website, which is thouroghly cringeworthy)

https://medarbetare.ki.se/people/bjbrag
 
rvallee said:
Are there available resources in Finland, a reliable patient organization perhaps, for yet another patient being held in a psychiatric unit against their will?



Yet another example of the negative consequences of the psychosocial model, that any contact with medical professionals is a huge risk that can lead to being detained for being sick, under the guise of some imagined "exercise phobia".
Click to expand...

Oh, no!:cry::cry::cry:
 
I just got this response from Millions Missing Finland:


"Hi Anna,

So awful to read this, thank you for contacting us and looking help for her.

There are two associations:

https://slme.fi/en/association/

and

https://www.facebook.com/SuomenMECFSyhdistysry/




Unfortunately we, Millions Missing Finland, don`t have the resources to help her dealing with the hospital and doctors. In case in need for publicity for this insane and inhumane case our social media channels are of course available.

So so sad to hear, I truly hope she gets help.

Best wishes,
Helga / Millions Missing Finland"
 
Last edited:
Mette Schøyen has volunteered for the Norwegian ME Association for almost 20 years. She and two of her daughter have ME. She's a contact personer for patients and carers with severe ME and for children/adolescents and their families. In addition she's held numerous seminars and worked towards politicians and other decision makers in order to move the ME field forwards, among many other things.

She is a wise woman, with a lot of experience and compassion and we are lucky to have her as an advocate.

The Snapchat ME community "Bli_MEd" has done an interview with Mette Schøyen which is also available on YouTube where she talks about ME in general, her work, how she and her children have delt with living with ME, the situation for ME patients in Norway and much more.

(Norwegian only)

 
https://translate.google.com/translate?sl=da&tl=en&u=http://ugeskriftet.dk/nyhed/soren-brostrom-til-fas-i-har-en-kognitiv-brist-i-forstar-ikke-magten-og-nar-i-er-klar-til-det?fbclid=IwAR02WxxiAuZPng7zAkbjru0ZtbgrCcVCk9lxTEoDmSMUTJ7UlPn2ZkHf7xg

Søren Brostrøm at it again.

At the yearly conference for The Danish Association of Specialist doctors, the Director of The Danish Health Authority 'Søren Brostrøm' gave a speech.

The article features some excerpts from his speech, and also features some quotes from the other speakers. Generally the focus is the democratization of medicine. Where the Danish Health Authority makes sure to lump in ME-activism with the anti-vaccine movement as much as possible. Apparently they hired a PR-firm to fight the Danish ME/CFS patients, and this seems to be what that kind of money gives you.

'That day was not a stellar moment for me. The National Board of Health had very strongly indicated - almost with exclamation points - that we were very concerned about somatizing something that is not somatic and that it would do more harm than good. But regardless of how much I disagree with the decision, I bowed my head and thought how fantastic it is that we have democracy. You may think a decision is crazy and populism, but both as an official and a general citizen, it is my experience that democracy is better than its reputation and reputation,

A reality where most of it is up for discussion. Where someone even clumps his toothpaste because fluoride is considered dangerous. Where vaccines are suspected, pseudoscience has crowned days on the Internet and - cf. the example of the reclassification of ME (Myalgic Encephalomyelitis) - where the experience in medical circles is that the professionalism is being over-run by the politicians.

-Søren Brostrøm
Click to expand...
 
Last edited:
Rick Sanchez said:
Apparently they hired a PR-firm to fight the Danish ME/CFS patients, and this seems to be what that kind of money gives you.
Click to expand...
Whaaat?! Is that confirmed?

Hm, so Brostrøm thinks Danish politicians have reclassified ME from non-somatic to somatic. Can he really not see that it's him and his like who have done the reclassifying, and the other way round, from somatic to non-somatic (aka functional)? The politician haven't reclassified anything; they've just realigned Denmark with the WHO.

As long as people like him are in powerful positions I fear Danish PwME have a long hard road ahead.
 
Ravn said:
Whaaat?! Is that confirmed?

Hm, so Brostrøm thinks Danish politicians have reclassified ME from non-somatic to somatic. Can he really not see that it's him and his like who have done the reclassifying, and the other way round, from somatic to non-somatic (aka functional)? The politician haven't reclassified anything; they've just realigned Denmark with the WHO.

As long as people like him are in powerful positions I fear Danish PwME have a long hard road ahead.
Click to expand...

Can't remember where I read it, so given I don't have a source let's just called it rumor-based for now. They were completely open and transparent about it, if I remember correctly though.

From the perspective of the Danish Health Authority and many Danish health care professionals (who are not siding with ME/CFS patients) it isn't controversial at all. From their perspective ME/CFS patients are spreading dangerous pseudoscience, which of course has to be challenged. Søren Brostrøm seems to think the National Health Authority lost the battle against the Danish patients due to optics, and not because the functional somatic syndrome approach doesn't actually have any scientific foundation or scientific application. From his perspective it wasn't so much Danish politicians siding with international scientists who disagree with the bio-psycho-social approach, as it was Danish politicians siding with crazy Danish patients to score cheap points.

It's also very important to understand that most Danish people suffer from some sort of ''Danish exceptionalism'', we genuinely believe we are the best at everything. The idea that a bunch of Danish psychiatrists from Århus might just simply be terrible at their job and wrong is very hard to grasp for some reason. So as long as we don't have any Danish ME/CFS specialists, it's going to be a challenge convincing Brostrøm of anything.
 
Last edited:
Ravn said:
Whaaat?! Is that confirmed?
Click to expand...
I'm not sure if this is the same thing, or something else, but Per Fink recently said in an interview that he had hired help from a communication agency and that his staff has received media training. He had also hired a combined journalist and doctor to engage in dialogue with the most critical patients and patient organisations,. I'm not aware of the Danish Health Authority having hired any PR-firm for the ME-debate, though.
https://www.s4me.info/threads/denmark-interview-with-per-fink-in-dagens-medicin.11218/
 
Kalliope said:
Politicians in Sweden are working for a ward for ME-patients in the county Västerbotten. For time being there is nothing offered to ME patients in the region.

Västerbottens-Kuriren: Ny mottagning för ME-sjuka

Not able to provide a google translation for this article, but here's a recap.

It says a report on ME/CFS was published in May stating there are few wards for ME patients in the country and none North of the capitol, Stockholm. The level of knowledge is low and there is a mistrust towards the diagnosis among some health care workers.

A ward could offer the patient group access to care and knowledge about the diagnosis as well as continuity and security with improved quality of life as a goal.
Click to expand...

#MEvårdsaknas is a new Swedish advocacy campaign demanding (better) medical care for people with ME. The igniting spark was the recent news that the plans to open a specialist clinic in the north of Sweden have been scrapped "because of the financial situation" (or, in other words, the politicians and bureaucrats chose to prioritise other things).

https://mevardsaknas.wordpress.com/

There's a petition too:
https://www.mittskifte.org/petition...isk-encefalomyelit-me-varda-vard-mevardsaknas

https://www.facebook.com/mevardsaknas/

Google Translate said:
The protest campaign #MEvårdsaknas is our way of saying: Enough is enough! We can't wait any longer! Because even though we are chronically ill, the situation is extremely acute. ME is a debilitating disease and people do not get the support they need at all. Care is not equal. Not good, nor [geographically] close. Not safe for patients. And the care offered to us is absolutely out of proportion to the need!
Click to expand...

Google Translate said:
This protest action is carried out by people with ME with support from relatives. The initiator is Malin Carlbom, occupational therapist, long-term ill and resident in Västerbotten.
Click to expand...

I support this campaign :thumbsup:
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom