Swedish Government: More knowledge is needed to better support people with CFS

mango

mango

Senior Member (Voting Rights)
Regeringen: Mer kunskap behövs för bättre stöd till personer med kroniskt trötthetssyndrom

http://www.regeringen.se/pressmedde...-till-personer-med-kroniskt-trotthetssyndrom/

Swedish Government -- Google Translate said:
More knowledge is needed to better support people with chronic fatigue syndrome

The government has decided to instruct the National Board of Health and Welfare to review the state of knowledge regarding ME/CFS, known as chronic fatigue syndrome, and assess the possibilities of supporting the healthcare providers.

"The state of knowledge is many times too low, healthcare professionals I meet feel they can not provide the right patient support. The government wants to do something about it, this is an important start to that work," says Minister of Social Affairs Annika Strandhäll.

On the basis of the knowledge review, the National Board of Health shall assess which form of support would be the best, for example, a knowledge support [national and/or regional clinical guidelines ~ mango] and an insurance medical decision-making aid [guidelines ~ mango]. The National Board of Health will receive SEK 500,000 for this assignment to be used during the year.

"I recently visited Stora Sköndal's neurorehab [biomedical ME/CFS center ~ mango], which is one of the few places in the country with expert competence. They experience a very strained situation and are wanting to increase the knowledge among more healthcare professionals. The Medical Association has also called for more knowledge," says Minister of Social Affairs Annika Strandhäll.

The government estimates that the knowledge situation is too low around ME/CFS, both in health care and in insurance medicine. The government wants to ensure that healthcare has the right prerequisites and knowledge to meet this patient group, make the correct diagnoses and provide proper treatment.

The symptoms of ME/CFS are usually described as fatigue or have a feeling of fatigue that does not go away after resting and feeling pain in the body.

The National Board of Health shall report the assignment by 31 December 2018.

published 06 May 2018
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mango said:
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")
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Personally, I'm not sure what to think about this... Could go either way, I guess? I've read some of the drafts of the regional "healthcare programs"/clinical guidelines for ME/CFS that are currently under development, and in my opinion they are leaning way too heavily towards BPS :( I would say that the main influence here in Sweden, in this context, seems to be the evidence review by Cochrane, and as you all already know they recommend CBT/GET.

Personally, I'd much much rather continue having no guidelines at all, than having BPS ones.
 
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mango said:
in my opinion they are leaning way too heavily towards BPS :( I would say that the main influence here in Sweden, in this context, seems to be the evidence review by Cochrane, and as you all already know they recommend CBT/GET.
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I believe a lot of lobbying is needed from PWME this year to increase the base of knowledge. I hope people with Twitter accounts will put pressure on the minister and all institutions involved to avoid the BPS maffia´s taking part in this. Though, I´m grateful to Annika Strandhäll and her initiative.

Who knows if there´ll be a breakthrough in ME research before this year has ended. One day it will happen.

Edit: Luckily, there are several professors and doctors advocating for ME in Sweden; Professors Gottfries, Blomberg, Blomqvist, Rosén a.o. I hope their voices will be those who dominate.
 
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Helen said:
I believe a lot of lobbying is needed from PWME this year to increase the base of knowledge. I hope people with Twitter accounts will put pressure on the minister and all institutions involved to avoid the BPS maffia´s taking part in this. Though, I´m grateful to Annika Strandhäll and her initiative.
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I'd like to add that I believe our activism has to be very well thought-out, carefully aimed, based on solid facts & evidence, and with a good understanding on how these processes work etc. I can't help feeling as if we are walking a tightrope... even small mistakes can have devastating consequences. There is so much prejudice and disinformation out there, and some very influential BPS forces as well... We have to try and be as clever about it as humanly possible.
 
I'd prefer clinicians knowing they don't know enough to thinking they know everything, and then prescribing CBT and GET, as they do here. But yes, it seems most of the European nations are in on the BPS nonsense. The Netherlands, Denmark, Sweden, Switzerland, the UK...
 
mango said:
I'd like to add that I believe our activism has to be very well thought-out, carefully aimed, based on solid facts & evidence, and with a good understanding on how these processes work etc. I can't help feeling as if we are walking a tightrope... even small mistakes can have devastating consequences. There is so much prejudice and disinformation out there, and some very influential BPS forces as well... We have to try and be as clever about it as humanly possible.
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I totally agree, but how to perform that with so many wills and opinions? Until we have solid and unquestionable results from research, I think we have to live with those difficulties. Hopefully quality facts and information will be in majority in media, instead of the BS.
 
Helen said:
I totally agree, but how to perform that with so many wills and opinions? Until we have solid and unquestionable results from research, I think we have to live with those difficulties. Hopefully quality facts and information will be in majority in media, instead of the BS.
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I don't have any solutions, I'm afraid :) But I believe a great point to start from would be to have laser-focus on the few things that we all agree on. I believe in repeating a few undeniable facts over and over, backed up by solid evidence (including anecdotal evidence such as, for example, surveys showing the potential harms of GET), rather than trying to bury the politicians in an avalanche of varying opinions and articles of questionable quality etc. But that's only my personal opinion, of course :)
 
Sorry @mango, the question was rethoric :). The good thing, I think, is that so many newspapers, also smaller local ones publish about ME, and the bad thing then is that all these articles, radio and TV segments can´t be controlled regarding facts.


There was a good and rather long TV segment in Channel 1 Rapport, about an hour ago, about the news that the Minster of Social Affairs " ...has decided to instruct the National Board of Health and Welfare to review the state of knowledge regarding ME/CFS, known as chronic fatigue syndrome, and assess the possibilities of supporting the healthcare providers".

Fingers crossed that experienced ME-doctors will be included in that working-group, and even better that good and groundbreaking research will be published soon.
 
Helen said:
There was a good and rather long TV segment in Channel 1 Rapport, about an hour ago, about the news that the Minster of Social Affairs " ...has decided to instruct the National Board of Health and Welfare to review the state of knowledge regarding ME/CFS, known as chronic fatigue syndrome, and assess the possibilities of supporting the healthcare providers".
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https://www.svtplay.se/video/17753915/rapport/rapport-6-maj-18-00-2?start=auto

(Available until 13 May.)
 
i know you guys have had a conference recently, (last 2-3 years perhaps)- the conference in Canada was successful from my point of view.

I agree that the strategies have to be carefully thought through, but the more we try, eventually we will win and prevail.

Here are a few ideas:

-May 12th is coming. Is there a protest that can be quickly organized?
-Patient engagement in health care is high in the priority list of government these days. Look up opportunities in your country and regionally. Sometimes it is an opportunity to tell your story, and speak directly with the decision makers.
-attend conferences if at all possible.
- seek out advice from other (unrelated) patient organizations who may have feedback on how to move forward. They may have a wealth of information on how to grow, how to lobby, what should be included when discussing with health minister, etc. They may even have connections.
-social media presence (twitter is probably the best one at the moment) - to reach outside our community
-patient-oriented research, is this a big thing in Scandinavia? It allows patients to join up with research teams, and asking researchers to tackle research that is oriented towards the patient. Here in canada there is research funding reserved for researchers collaborating with patients.

Lastly, this conversation is so important and relevant to all from all nations. We are all in the same boat.
 
mango said:
I'd like to add that I believe our activism has to be very well thought-out, carefully aimed, based on solid facts & evidence, and with a good understanding on how these processes work etc. I can't help feeling as if we are walking a tightrope... even small mistakes can have devastating consequences. There is so much prejudice and disinformation out there, and some very influential BPS forces as well... We have to try and be as clever about it as humanly possible.
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While I agree that mistakes could be costly.

I still feel that that it is best to be as aggressive as possible with advocacy. I feel the entire HIV-advocacy is a good example. Better to be obnoxious militant patients than to do nothing and worry about making mistakes. Especially because the ME/CFS situation is already so terrible. I mean in Denmark, I actually would say the situation can't really get much worse, although Finland is doing what they can to take the nr. 1 spot in worst place for ME/CFS patients.

I also think that Twitter could turn out to be an extremely important tool. Especially in Scandinavia, I have personally considered using it for the upcoming Danish recommendations.

The reasons are simple. Twitter simply isn't used as commonly in Scandinavia as in the Britain / The US. This makes tweets aimed at the twitter accounts of health authorities / politicians a lot more powerful, since we can easily seem a lot more numerous than we actually are. Also authorities / newsoutlets / politicians seem extremely vain about their Twitter accounts for some reason. I feel like Sharpes kamikaze tweets are a good example of this.

Of course I think it's extremely important not to make tweets that come off as harassment. But tweets complaining about BPS / CBT / GET and linking to the Nature article or some of the other great articles out there could make a difference.
 
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