News from Scandinavia

mango said:
SVT.se: "Inte klarlagt att kroniskt trötthetssyndrom är en fysisk sjukdom"
https://www.svt.se/opinion/article17674467.svt

"Not determined that ME/CFS is a physical disease" (Google Translate not available)

Reimer is one of the most notorious BPS extremists in Sweden.
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I´m waiting for the day when Dr. Mats Reimers (to be sure that he gets a google alert on this) will have updated his knowledge on ME/CFS. He is surely able to google PubMed and read up on the latest research, if he´d like to. For some reason, he doesn´t want to, and continues to publish articles to dismiss ME/CFS as a physical disease and neglect ongoing research. Sorry, Mats Reimers, but it´s time for you to "make a poodle" as we say in Swedish. To admit that you were wrong.
 
Speaking of Reimer. Sten Helmfrid published this brilliant article last month:

Mats Reimers blogg på Dagens Medicin ger en systematiskt missvisande bild av ME/CFS
https://www.researchgate.net/public...ger_en_systematiskt_missvisande_bild_av_MECFS
Abstract
Mats Reimer has been blogging about ME/CFS for a long time on the website of Dagens Medicin (a Swedish medical journal). His blogs have often been criticized for lacking scientific rigor. This article is a summary of the criticism. Reimer conflates ME/CFS with chronic fatigue, although these are two different things. He omits conclusions from authoritative sources that contradict his own views on ME/CFS, for example consensus reports. Reimer has uncritically supported studies on CBT and graded exercise therapy for ME/CFS, although the studies are flawed and the conclusions have been rejected by many experts. Reimer often uses rhetorical tricks that have no place in a scientific debate. For example, he represents his opponents as militant, intransigent, and ignorant. Dagens Medicin is enabling Mats Reimer to present a strongly biased view of ME/CFS for Swedish healthcare and medical professionals. [Text in Swedish]

Mats Reimers blogg på Dagens Medicin ger... (PDF Download Available). Available from: https://www.researchgate.net/public...ger_en_systematiskt_missvisande_bild_av_MECFS [accessed Apr 16 2018].
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Mats Reimer comes across as someone who is trying to get away with not having done their homework. He avoids engaging with the specifics of the real controversies, and instead seems to want to focus on the tedious 'psych vs bio' story.

He argues that analysing data from old trials won't settle the debate... but it's pretty helpful when the key debate is whether results from old trials had been misrepresented or not! Nothing will settle the boring 'psych vs bio' debate, which I suspect is why so many of those with a history or promoting quackery want to try to make this the central controversy surrounding CFS. It's funny watching people like this reduced to promoting specially-selected anecdotes from that 'Recovery Norge' - an orgnaisation seemingly set up in order to help people get around restrictions on advertising quackery.
 
Great article from the mother of a ME/CFS patient today in "Dagens Medisin" (Medicine Today):

in norwegian: https://www.dagensmedisin.no/artikler/2018/04/17/diagnoseforvirring-og-legers-kompetanse/?

google translate: https://translate.google.no/translate?sl=no&tl=en&js=y&prev=_t&hl=no&ie=UTF-8&u=https://www.dagensmedisin.no/artikler/2018/04/17/diagnoseforvirring-og-legers-kompetanse/?&edit-text=&act=url

it's very long, but here is a sample (google translate):
THIS is a situation we as relatives have ended several times after the child became seriously ill. Only during the investigation, and especially after the diagnosis was made. We asked for pain relief, sleep help, drug testing and participation in studies. But there is little research on medication for the symptoms that occur at ME. There is little documentation despite much experience-based knowledge, and the doctor is understandably scared of his practice. This should make a seriously ill child learn to take more care than to get help.

But there is a lot to do. It may not be that the doctor should be considered when the child is seriously ill - with symptoms that can be alleviated.

CONFUSION. It's not complicated to see, and to some extent understand, that doctors and healthcare professionals are confused about ME sick. It is difficult when the National Competence Service for CFS / ME is unclear and blends the disease ME with exhaustion. It is my experience that many with ME experience having to break in contact with the National Center for Expertise for CFS / ME or do not seek the Center for Competence at all because the Center does not possess adequate competence for ME and should therefore be distinguished as a separate chronic fatigue advisory body and stress disorders that the competence center is very good at.

This requires a completely different approach for ME sick. This is stated in the letters to the Norwegian Directorate of Health from the ME association and from the ME parents. (...)
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Very good article in the Swedish women's magazine Året Rundt. A typical story from ME patient Concetta and a bit about the ME-ward at Stora Sköndal and how they are working.
Året Runt: Concetta lider av kroniskt trötthetssyndrom: "Jag fick vänta åtta år på min diagnos"
google translation: Concetta suffers from chronic fatigue syndrome: "I had to wait eight years for my diagnosis"

Today, pacing is considered to be the treatment that works best.Pacing involves an adaptation of life to minimize its energy consumption.
"We focus on learning patients in a smart way using their energy. It is important to reduce unnecessary activity and put energy on what is important and provide the best possible quality of life. You simply get to learn how to adapt your physical activity to the day shape. And to not do too much during days when you feel stronger.
 
Stora Sköndal to temporarily stop accepting new patients

Less than a month ago Stora Sköndal ME/CFS Center in Stockholm, Sweden, filed a request to temporarily stop accepting new patients. The reason given is that their waitlist has been growing uncontrollably lately, because of all the attention on ME/CFS in the media the last few months. Their waitlist is currently 14 months long, according to their website. They have received 150 new referrals in 2018 so far (from pwme all over the country), there are 300 people on the waitlist, and that's on top of the 500 patients who are already registered with them and who all require at least one appointment with a doctor a year.

This news got out at the same time as the announcement that Bragée ME/CFS-Center is (probably) closing. See separate thread here:
https://www.s4me.info/threads/bragée-me-cfs-center-in-sweden-is-probably-closing.3702/
 
mango said:
Stora Sköndal to temporarily stop accepting new patients

Less than a month ago Stora Sköndal ME/CFS Center in Stockholm, Sweden, filed a request to temporarily stop accepting new patients. The reason given is that their waitlist has been growing uncontrollably lately, because of all the attention on ME/CFS in the media the last few months. Their waitlist is currently 14 months long, according to their website. They have received 150 new referrals in 2018 so far (from pwme all over the country), there are 300 people on the waitlist, and that's on top of the 500 patients who are already registered with them and who all require at least one appointment with a doctor a year.
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This is sad news. I remember they had a temporary stop also shortly after they had started accepting ME-patients, because so many patients contacted them. They had to hire more people. Hope more resources and more employees will be the result also this time. Perhaps the closing of the Bragée-center will put more pressure on politicians to allocate more resources to Stora Sköndal? As far as I understand the ME-ward at Stora Sköndal is excellent and if it continues to grow that will wonderful.
 
Kalliope said:
Very good article in the Swedish women's magazine Året Rundt. A typical story from ME patient Concetta and a bit about the ME-ward at Stora Sköndal and how they are working.
Året Runt: Concetta lider av kroniskt trötthetssyndrom: "Jag fick vänta åtta år på min diagnos"
google translation: Concetta suffers from chronic fatigue syndrome: "I had to wait eight years for my diagnosis"

Today, pacing is considered to be the treatment that works best.Pacing involves an adaptation of life to minimize its energy consumption.
"We focus on learning patients in a smart way using their energy. It is important to reduce unnecessary activity and put energy on what is important and provide the best possible quality of life. You simply get to learn how to adapt your physical activity to the day shape. And to not do too much during days when you feel stronger.
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This magazine also had a good article on ME-research.

Året runt: Det forskas intensitet på kroniskt trötthetssyndrom
google translation: It is researched intensively on chronic fatigue syndrome

Prof. Jonas Blomsberg talks about research into ME and mentions mycoplasmic bacteria, other infections, dysbiosis, mitochondria and Rituximab.
 
Kalliope said:
This is sad news. I remember they had a temporary stop also shortly after they had started accepting ME-patients, because so many patients contacted them. They had to hire more people. Hope more resources and more employees will be the result also this time. Perhaps the closing of the Bragée-center will put more pressure on politicians to allocate more resources to Stora Sköndal? As far as I understand the ME-ward at Stora Sköndal is excellent and if it continues to grow that will wonderful.
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I agree, it is sad :( It's difficult financially and also difficult to find and recruit competent people with sufficient skill and knowledge.

Moneywise Stora Sköndal and Bragée currently have very similar agreements with Stockholm County Council, but as healthcare providers they seem to have very different approaches, views and expectations. Both are pushing for better terms.

For example, in their recent Facebook post Bragée states that they don't want to be "a banal centre for comfort, support and pacing.", "Most of all we want to get the chance to do rehabilitation. We are seeing many who, after a while, are feeling ready again for work or increased activity." (I have no idea what those rehab treatments would be..? Who are these pwme who supposedly improved substantially, helped by what treatments, and why haven't we heard from them? Personally, I'm sceptical and a bit worried about the comment about "feeling ready" and "increased activity"... )

Stora Sköndal on the other hand, seems to be focusing on patient safety and security in their letter. They write, "The financial terms are currently too insecure for us to want to invest in a larger expansion of the centre. With new contract documents we are hoping for a better distribution of the remunerations, so we will get better stability in our business and the chance to increase the number of staff little by little."

Both of them are finding the ever increasing absurd demands from the Social Insurance Agency (FK) regarding examinations, tests, evaluations, doctor's certificates focused only on "objective findings" etc etc etc, to be a massive burden, hugely challenging, and extremely time-consuming (the remunerations don't cover this bit, so it's hours upon hours of unpaid work).

So, I can't help getting the impression that Bragée would rather quit if they can't do extraordinary things like exciting, groundbreaking research and development and getting people back to work? While Sköndal seem to be very aware of how valuable and desperately needed even the most basic medical care and support are to pwme.
 
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Kalliope said:
@mango is there a way we could support Stora Sköndal? A petition perhaps with acknowledgement of their great work which Sweden can be proud of - and other countries should learn from. That they should get all the resources necessary in order to provide the care the patients need.
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Great questions and suggestions, thank you :) I too would love to know what kind of support would be the most effective, what strategy and tactics would be worthwhile, and if there's anything we can do to help.

RME Stockholm (a local group of the patient organisation RME Sweden) would probably be the ones to ask, since they are in regular contact with both ME centers and the politicians, and have been involved since the very beginning of the procurement process etc. However, my experience is that they tend not to involve people from outside, so I have no idea what their plans are, if any. Or, you could contact Stora Sköndal directly, of course.
 
Three articles in Aftonbladet (Sweden) today:

Camilla var sjuk i ME/CFS – reste utomlands för att avsluta sitt liv
https://www.aftonbladet.se/nyheter/...cfs--reste-utomlands-for-att-avsluta-sitt-liv

Google Translate, English ("Camilla was ill with ME/CFS -- traveled abroad to end her life")

Ministern om ME-patienternas lidande: ”Blir självklart berörd”
https://www.aftonbladet.se/nyheter/a/xRW18Q

Google Translate, English ("The minister on the ME patients' suffering: 'It is moving, of course'")

Ställer ut skor för att uppmärksamma mystiska sjukdomen
https://www.aftonbladet.se/nyheter/a/rLK0E8/staller-ut-skor-for-att-uppmarksamma-mystiska-sjukdomen

Google Translate, English ("Putting out shoes to highlight the mysterious illness")

ETA:
 
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Hi Mango, I have just tried to open the English translation, but it gives me a page in Swedish - do I have to sign up to log in?
The articles, from the titles, sound important for outreach - can you explain what the website is - a newspaper, blog?? What sort of readership is it likely to have? (I'm trying to work out whether it should go in my weekly News in Brief).
 
Trish said:
Hi Mango, I have just tried to open the English translation, but it gives me a page in Swedish - do I have to sign up to log in?
The articles, from the titles, sound important for outreach - can you explain what the website is - a newspaper, blog?? What sort of readership is it likely to have? (I'm trying to work out whether it should go in my weekly News in Brief).
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Sorry you're having trouble accessing Google Translate. What does does it say in Swedish? No, you don't have to log in. They don't however allow adblockers, could that be the problem perhaps?

I just posted a new thread about the Government's statement here:

Swedish Government: More knowledge is needed to better support people with CFS
https://www.s4me.info/threads/swedi...eeded-to-better-support-people-with-cfs.3943/

Aftonbladet is one of the main evening newspapers here in Sweden, and possibly Sweden's largest news website? The quality of their articles and the facts behind them vary a lot, some of it is good but there's tons of rubbish too...
https://en.wikipedia.org/wiki/Aftonbladet
 
Trish said:
Hi Mango, I have just tried to open the English translation, but it gives me a page in Swedish - do I have to sign up to log in?
The articles, from the titles, sound important for outreach - can you explain what the website is - a newspaper, blog?? What sort of readership is it likely to have? (I'm trying to work out whether it should go in my weekly News in Brief).
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google translate doesn't work for me any more (no idea why); you can access all the articles here


Camilla had ME and brain tumor, chose to end his life in a clinic

Had fought chronic illness for several years ✓ Partner Anders: ”Looked gloomy”

The minister: ”I'm touched”
Give the new mission to the Board of health

Set out shoes for ME-sick
”Many sufferers without being seen”


Anki, 32, is confined to bed by severe illness
PLUS Anki Johansson is hit by ME ✓ Is no treatment
 
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