News from Scandinavia

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

 

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.

 

And here are a couple of tweets by Helmfrid (thank you!) in response to Reimer's SVT.se opinion piece earlier today:

https://twitter.com/user/status/985777045878837248


https://twitter.com/user/status/985779117768564736


https://twitter.com/user/status/985779514490880002

 

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):

 

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.

 

Värmlands Folkblad: Dags att synliggöra ME
https://www.vf.se/insandare/dags-att-synliggora-me/

Google translate, English ("Time to make ME visible")
https://translate.google.se/transla.../insandare/dags-att-synliggora-me/&edit-text=

 

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/

 

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.

 

Too sad. What treatments does Stora Sköndal offer? The question is maybe off topic, but I´d just like to get a list with the treatments that they are offering.

 

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.

 

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.

 

@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.

 

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.

 

"Due to a large amount of referrals and longer waiting times, we will not be accepting new referrals between 1 May and 31 August. The estimated waiting time for first time visitors is at least 14 months."

http://www.storaskondal.se/vara-verksamheter/neurologisk_rehabilitering/mecfs-mottagning/

 

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:

 

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

 

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