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

Have you had a look at the comments on Dagens Medicin's article? The website is only for healthcare professionals. Every time they publish something on ME, the clowns show up... For example, this comment:
DL Stockholm said:
Kunskapen är tillräcklig som den är. Det har forskats på "ME" sedan 60-talet och inga studier har visat på intrinsisk neurologisk eller autoimmun sjukdom. Varken PET, SPECT, CT, MR, spinaltappning, prover eller ens patomorfologisk undersökning av nervceller har visat någonting som helst avvikande i vare sig hjärna eller ryggmärg. Vad är det vi ska lära oss mer om? Börjar regeringen skapa en ny "elallergi"? Är vi tillbaka på 90-talet igen? Masshysterin lär ju onekligen breda ut sig nu när Aftonbladet har tagit på sig rollen som hobbydoktor. Och då det är valår så kan vilka knasigheter som helst komma utströmmandes från regeringskansliet. Vi bor i Absurdistan...
Click to expand...
https://www.dagensmedicin.se/artiklar/2018/05/07/kunskap-om-kronisk-trotthet-for-lag/

"DL Stockholm 7 May 2018 13:33
The knowledge is sufficient as it is. "ME" has been researched since the 60's and no studies have shown intrinsic neurological or autoimmune disease. Neither PET, SPECT, CT, MR, spinal taping, samples or even patomorphological examination of nerve cells have shown anything different in either brain or spinal cord. What are we to learn more about? Is the government starting to create a new "electricity allergy"? Are we back in the 90's again? Mass hysteria is undoubtedly on the rise now when Aftonbladet [one of Sweden's largest evening newspapers] has taken on the role of hobby doctor. And when it's election year, any silliness at all can come pouring out of the government office. We live in Absurdistan..."

And they are supposed to be healthcare professional?? :wtf::banghead:

However, there's also a commenter called Sten, who is doing an absolutely brilliant job every single time! He's amazing, and I'm super grateful for all the effort he puts into writing excellent comments, over and over again :thumbup::trophy@
 
I agree with the applauds to Sten. I´m sure he is reading this. You are doing a really great job!
mango said:
Have you had a look at the comments on Dagens Medicin's article?
Click to expand...
Actually, that comment can´t let me down. There is a group of unknowledgeable people, whatever agenda they have, and they will surely continue until, and even after, ME/CFS has been confirmed genetically and/or with a biomarker. I prefer to ignore them, and look at all the good that has come out since the last 6 months. The tide is unstoppable now, in my opinion.

Writers like that one, is only making himself a fool. It will be evident sooner or later.
 
mango said:
Have you had a look at the comments on Dagens Medicin's article? The website is only for healthcare professionals. Every time they publish something on ME, the clowns show up... For example, this comment:

https://www.dagensmedicin.se/artiklar/2018/05/07/kunskap-om-kronisk-trotthet-for-lag/

"DL Stockholm 7 May 2018 13:33
The knowledge is sufficient as it is. "ME" has been researched since the 60's and no studies have shown intrinsic neurological or autoimmune disease. Neither PET, SPECT, CT, MR, spinal taping, samples or even patomorphological examination of nerve cells have shown anything different in either brain or spinal cord. What are we to learn more about? Is the government starting to create a new "electricity allergy"? Are we back in the 90's again? Mass hysteria is undoubtedly on the rise now when Aftonbladet [one of Sweden's largest evening newspapers] has taken on the role of hobby doctor. And when it's election year, any silliness at all can come pouring out of the government office. We live in Absurdistan..."

And they are supposed to be healthcare professional?? :wtf::banghead:

However, there's also a commenter called Sten, who is doing an absolutely brilliant job every single time! He's amazing, and I'm super grateful for all the effort he puts into writing excellent comments, over and over again :thumbup::trophy@
Click to expand...

Wow. The ignorance. The wilful disdain. Then the casual racism at the end. He's also wrong on several fronts.
 
mango said:
Here’s a very sparse info page about the ME/CFS evidence review SBU is currently working on in Sweden. It’s part of Socialstyrelsen’s (The National Board of Health and Welfare) project to develop guidelines.

https://www.sbu.se/sv/pagaende-projekt/me--myalgic-encephalomyelitis/

According to this page, there are 3 experts involved. One of them is a knowledgeable biomed ME/CFS doctor and researcher (One of the best, yay! Works at Stora Sköndal ME/CFS Center); one is a doctor focusing on insurance & social medicine as well as gender aspects in mental illness; and the third one is a professor emerita of psychiatry focusing on burnout (which in Sweden is acknowledged as a separate diagnosis, different from ME/CFS).

Unsurprisingly, no patient involvement.

SBU = Swedish Agency for Health Technology Assessment and Assessment of Social Services
https://www.sbu.se/en/

ETA: Expected publication is "winter 2019".
Click to expand...
 
Here's a news article from 2009, about the book one of the above experts wrote.
Google Translate said:
[He] is the stress doctor who is skeptical about the diagnosis of stress. In his book "Something is sick", he describes sick leave as a drug.
- Sick leave has side effects. It can stop patients from being rehabilitated.
Click to expand...
Google Translate said:
How do you look at stress?
"I see the increase of stress-related problems as a cultural phenomenon. We shall not see stress as a disease.

How do you mean?
- The diagnosis of stress has different attractiveness in different groups at different times. It is cultural. In the 80's, it was called Yuppie's disease. There was a diagnosis with positive meaning. After the 90's crisis year it was called burned out. Then the meaning became negative.
Click to expand...
Google Translate said:
Can you cure stress?
"Stress is often about social and psychosocial circumstances, and as a doctor, there is little chance of influencing this. You can prescribe medicine or prescribe therapy, but each individual must ultimately take his or her own responsibility. Healthcare can be a support, but you can not change a person's behavior unless he or she wants to. It's also not my job as a doctor.
Click to expand...
https://www.metro.se/artikel/det-kan-vara-farligt-att-vara-sjukskriven-xr

(I haven't been able to find anything about their views on ME, CFS or MUS etc specifically. Except for the mention of "yuppie's disease" in the quote above.)
 
Last edited:
In the attached slide we perhaps learn a bit about the expert's understanding of correlation and causation?

Very rough translation:

"Longterm sick leave
Earlier means more dangerous

Those who take early retirement due to an illness or disability at a young age (25-30 years old) run approx 7-8 times higher risk of dying early compared to people of the same age who have not taken early retirement due to illness.

It is less dangerous to smoke 20 cigarettes a day than to take early retirement due to an illness."

Source: https://slideplayer.se/slide/11266026/
 

Attachments

  • slide.jpg
    slide.jpg
    53.1 KB · Views: 1
Last edited:
mango said:
Those who take early retirement due to an illness or disability at a young age (25-30 years old) run approx 7-8 times higher risk of dying early compared to people of the same age who have not taken early retirement due to illness.

It is less dangerous to smoke 20 cigarettes a day than to take early retirement due to an illness."
Click to expand...


What an absurd conclusion....? Surley the risk for early death are linked to, you know - beeing sick???

So, actually beeing sick have more of an impact on your health than smoking, who would have known......? :emoji_face_palm:
 
mango said:
Those who take early retirement due to an illness or disability at a young age (25-30 years old) run approx 7-8 times higher risk of dying early compared to people of the same age who have not taken early retirement due to illness
Click to expand...
Yeah, because of poverty and disease. It is well-known that richer people get older in average.
 
It is true that "stress" is not a disease, it is a mostly meaningless buzzword used to mean all sorts of things.
See:
http://journals.sagepub.com/doi/10.1177/1745691616635593

Leaving work due to "stress" is a bad idea. Instead there are more meaningful underlying reasons.

But ME or CFS are not due to stress. So it seems strange that they'd have someone who researchers "poor health from seeking healthcare". https://katalog.uu.se/profile/?id=N2-1108

Fatigue syndrome - a diagnosis with scientific deficiencies Per Lytsy
https://translate.google.com/transl.../Functions/OldArticleView.aspx?articleId=9547
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom