News from Scandinavia

[Esther12]

Yes, by accident! Some sort of web service that archives presentations saved it, where a Norwegian journalist (who has actually realized that the ME-patients are right) discovered it by chance.

She downloaded it, and a few patients too once she tweeted about it I think, before they realized the mistake and asked for it to be removed from the archive.

Is there a copy of it anywhere?

Doesn't really matter (I expect I'm not going to be able to read it anyway), but if you had a link I thought it would be worth posting, particularly as she is complaining about the 'rhetoric' of the ME Association.

 

[Jonathan Edwards]

I have had a reply letter in Aftenposten before I think. This might deserve a reply. It seems to be mostly about imagined malice from MEA and about ME being due to stress. Since there is not a scrap of evidence for ME being due to stress and it isn't even the basis for the treatments in the trials it would be easy to point out that they have no idea what they are talking about.

 

[andypants]

Is there a copy of it anywhere?

Doesn't really matter (I expect I'm not going to be able to read it anyway), but if you had a link I thought it would be worth posting, particularly as she is complaining about the 'rhetoric' of the ME Association.

Yes, I can ask the journalist for it if it’s needed. I think she’s planning on a feature article when the time is ‘right’. For now though I think we’re better served by letting it play out for a while... NA has a new job as an advisor to a local DWP branch in Oslo and we’ve had some reports on how that is starting to play out, so there might be a need for a big push against her later and saving it for a rainy day might be a good idea

 

[inox]

forskning.no - is an online news magazine about research (forskning = research).

Yesterday they re-posted on facebook an article they wrote about a year ago, on the Wilshire et al re-analysis of PACE. "Therapy and exercise do not help against ME." [norwegian - google english]



Could be a coincidence, but it feels very much as a contribution to the current public debate in Aftenposten

 

[rvallee]

but then they fail to quote any problematic rhetoric

I guess that would be the "please, PLEASE, stop hurting us" part.

To some people, "you're completely wrong" is very aggressive. It's a bad combination in medicine, though.

 

[Sean]

Reversing the bodily rash of chronic stress is not easy.

And, by complete coincidence I am sure, that also makes for plenty of work and income for the chronic stress therapists.

or being stuck in 'sickness mode', not taking responsibility for their health

There it is, the dead end these arse-clowns always retreat to – the morality-play 'explanation'. Because they got nothing else, certainly no hard science.

If any single thing exposes their incompetence and dishonesty, and frankly their appalling cruelty, it is this.

 

[Kalliope]

The Swedish paediatrician Mats Reimer recently stopped writing for a news site for medicine, Dagens Medicin, and started writing for another site, Dagens Samhälle. It appeared that one of the reasons he stopped writing for Dagens Medicin, was his controversial opinions on ME. He is pro a biopsychosocial approach, PACE and Lightning Process as treatment for ME.

Yesterday he wrote the following in Dagens Samhälle:

Mats Reimer: Vården splittrad i synen på hur ME/CFS ska behandlas
google translation: The health care system is divided on how to treat ME/CFS

No one knows for sure what CFS depends on. No one knows which definition of the condition is most useful. More research is needed, both on biological mechanisms and on psychological. But already today there is actually hope. There are CFS patients who become better or completely healthy after psychotherapy; in Norway, they have gathered in the patient association Recovery Norway and share their stories to give hope to more people.

Today there is a reply from Sten Helmfrid:

Sten Helmfrid: ME/CFS-behandling får inte bygga på dåliga studier
google translation: ME/CFS treatment must not be based on poor studies

The deficiencies in the psychological treatment studies at ME / CFS have been reported to Mats Reimer on many occasions , but he does pose critical questions and continues to propagate for these treatment methods. Patients deserve better.

 

[andypants]

The deficiencies in the psychological treatment studies at ME / CFS have been reported to Mats Reimer on many occasions , but he does pose critical questions and continues to propagate for these treatment methods.

As I'm sure you could all guess, the above sentence was badly translated by Google and should read something like this:

The deficiencies in the psychological treatment studies at ME / CFS have been reported to Mats Reimer on many occasions , but he deflects critical questions and continues to propagate for these treatment methods.

 

[mango]

Today there is a reply from Sten Helmfrid:

Sten Helmfrid: ME/CFS-behandling får inte bygga på dåliga studier

The deficiencies in the psychological treatment studies at ME / CFS have been reported to Mats Reimer on many occasions , but he deflects critical questions and continues to propagate for these treatment methods. Patients deserve better.

Please do click through to open/view the original article, even if you don't understand Swedish. This is a brand new platform for Reimer, and website statistics can send a very clear message, so please visit Helmfrid's article to let them know what kind of ME/CFS articles we are interested in seeing more of going forward..! Many thanks

ETA: And for those of you on Twitter, here are a few good tweets to RT if you would like to help share Helmfrid's article



Rayman is the head of the opinions section at Dagens Samhälle




Also, here are two of Helmfrid's previous articles (in Swedish), with critical comments on Reimer's blog articles.

Mats Reimers blogg på Dagens Medicin ger en systematiskt missvisande bild av ME/CFS
https://www.dropbox.com/s/17hsm3eb0mwlxvg/Reimer ResearchGate korr.pdf?dl=0

Mats Reimer fortsätter att förmedla en felaktig bild av ME/CFS
https://www.dropbox.com/s/pk42813t8c6pqh3/Reimer SVT Opinion.pdf?dl=0

 

[Kalliope]

The Norwegian ME Association, Rogaland County, has for a long time worked on a project on adapted teaching for pupils with ME.
The project has resulted into a "Tool box" which will be presented at schools as a lecture for the staff. Participants will get a box afterwards with a booklet and a USB stick containing four animation films and slides from the lecture. There is no cost involved for the schools who want access to the Tool box.

A website about this school project has just been launched. The website is in Norwegian only.
https://www.meogskole.no

 

[Peter]

Please do click through to open/view the original article, even if you don't understand Swedish. This is a brand new platform for Reimer, and website statistics can send a very clear message, so please visit Helmfrid's article to let them know what kind of ME/CFS articles we are interested in seeing more of going forward..! Many thanks

ETA: And for those of you on Twitter, here are a few good tweets to RT if you would like to help share Helmfrid's article



Rayman is the head of the opinions section at Dagens Samhälle




Also, here are two of Helmfrid's previous articles (in Swedish), with critical comments on Reimer's blog articles.

Mats Reimers blogg på Dagens Medicin ger en systematiskt missvisande bild av ME/CFS
https://www.dropbox.com/s/17hsm3eb0mwlxvg/Reimer ResearchGate korr.pdf?dl=0

Mats Reimer fortsätter att förmedla en felaktig bild av ME/CFS
https://www.dropbox.com/s/pk42813t8c6pqh3/Reimer SVT Opinion.pdf?dl=0

These responses from Helmfrid are really good. If possible, everybody should read them. Easy to read, very well written and to the point.

 

[Sly Saint]

Don't know if this has been posted.
Article in Vaaju (Sweden) in english

The risk of embracing ME

Johan Rudström

15:00 | 2018-02-27

The disease ME chronic fatigue syndrome, is one of the fastest growing reasons for sick leave in Sweden. About 40,000 Swedes are diagnosed with ME and of these, 30,000 are so disabled that they are largely bedridden around the clock. Most are between 20 and 40 years and the women are more than men. But the medical profession is fragmented about ME, both in terms of the causes of the disease and in how it should be treated.

This may be the beginning of something much greater. In Norway, 1

Seems to be a re-run of something from 2018(?)
https://vaaju.com/swedeneng/the-risk-of-embracing-me-leader/

 

[Peter]

Don't know if this has been posted.
Article in Vaaju (Sweden) in english

The risk of embracing ME


Seems to be a re-run of something from 2018(?)
https://vaaju.com/swedeneng/the-risk-of-embracing-me-leader/

What a piece of rubbish.

Short term memory is a challenge, but seems to be loosely based upon the article in Expressen last year. It was an awful piece where Landmark were given a lot of space for spreading the insane lies about ME AS an epidemic and so on, sort of warning Sweden.

Anyone who knows anything about ME, the history, science and pseudoscience, the knowledge-situation among healthcare providers and has a minimum of integrity, know that you just can’t read numbers the way Landmark does without adjustments and modifications. But she does, cause she cares nada of facts, as long as she can earn a buck or thousand on the trademarked pseudoscience that harms patients.

I don’t know about this Vaaju, but it is quite astonishing using an alternative practitioner for an undocumented pseudo-method as a source. The whole peace fails and it’s just based upon no knowledge whatsoever of what he or she is writing about, only bad attitudes and little else.

 

[inox]

Don't know if this has been posted.
Article in Vaaju (Sweden) in english

The risk of embracing ME


Seems to be a re-run of something from 2018(?)
https://vaaju.com/swedeneng/the-risk-of-embracing-me-leader/

Never heard of Vaaju before. Their about-section is from this january:

"VAAJU.COM is an intellectual propriety of VAAJU Technologies Pvt. Ltd, a company formed by a group of young techno-entrepreneurs who strive to drive the largest content repository of news from across the globe for readers to explore daily news content from all across the world wide web on their PCs & Mobile phones."

This feels like one of those pages that re-publishes others stories, pretending to be a news site...? Most of their stories have zero views, from what I can see, so wouldn't worry too much about it?


Here is the original version of that editorial (edit: from february 2018), the Vaaju one is a word for word translation, so didn't bother with google translate:
https://www.unt.se/ledare/risken-med-att-omfamna-me-4913766.aspx

The one thing to point out - the original story was published in a local paper from Uppsala. Again, it could be by chance, but that is the hometown of Uppsala University and professor Jonas Berquist. The OMF funding and cooperation with US universities just had national coverage in Sweden.

 

[rvallee]

The disease ME chronic fatigue syndrome, is one of the fastest growing reasons for sick leave in Sweden

Is it? Given the poverty of data, not a single country has a register so accuracy is very low, how was that determined?

One possibility is that the diagnosis is more commonly being made, which kind of makes sense, but that increase would only be notable in the number of sick leaves being identified as ME, not an increase in the actual number of sick leaves.

But given how common it is to misdiagnose depression, anxiety or other unidentified health problems (without any back-propagation to correct those misdiagnoses) as CFS and saying it's the same as ME, the number of false positives is very high.

 

[rvallee]

It was an awful piece where Landmark were given a lot of space for spreading the insane lies about ME AS an epidemic and so on, sort of warning Sweden

Why is a life coach selling a commercial self-help program having such an influence on public health policies?

It's bad enough to have quacks with a medical degree doing the same, why is The Secret but with healing hands guiding national medical priorities anywhere?

 

[mango]

Is it? Given the poverty of data, not a single country has a register so accuracy is very low, how was that determined?

Advocates have been looking into it, contacted the National Board of Health and Welfare and the Social Insurance Agency's statistics department among others. No clear answers yet.

ETA: I haven't yet read all of the recent reports on ME/CFS by the National Board of Health and Welfare and the SBU (Swedish Agency for Health Technology Assessment and Assessment of Social Services). Perhaps there's more info there?

https://www.socialstyrelsen.se/publikationer2018/2018-12-48

https://www.sbu.se/sv/publikationer...lomyelit-och-kroniskt-trotthetssyndrom-mecfs/

 

[inox]

Is it? Given the poverty of data, not a single country has a register so accuracy is very low, how was that determined?

One possibility is that the diagnosis is more commonly being made, which kind of makes sense, but that increase would only be notable in the number of sick leaves being identified as ME, not an increase in the actual number of sick leaves.

But given how common it is to misdiagnose depression, anxiety or other unidentified health problems (without any back-propagation to correct those misdiagnoses) as CFS and saying it's the same as ME, the number of false positives is very high.

It's a typical Landmark-spin on things.

One of her main arguments for years when trying to demonize the ME association and doctors working with patients, have been the much lower diagnostic rates of ME in Denmark and Sweden. Where the illness have been less known and almost impossible to get a diagnosis. When Sweden and RME startet to get some information out, and more people got the diagnosis, she couldn't use that argument anymore. So, of course, the solution is to write an heathed opinion piece warning swedes about 'not make the same terrible mistakes as in Norway'. You know, taking ME seriously?

"The ME-epidemic is on it's way to Sweden" - from february 2018.

https://www.expressen.se/debatt/me-epidemin-ar-pa-vag-till-sverige/

 

[Peter]

Why is a life coach selling a commercial self-help program having such an influence on public health policies?

It's bad enough to have quacks with a medical degree doing the same, why is The Secret but with healing hands guiding national medical priorities anywhere?

Yes, it is unbelievable. The only “logical” explanation for letting quacks and charlatans into medicine, must be the crisis in health care, ref. health systems being under pressure and expenses hitting the roof with the benefits of people living longer and such.

Difficult times resource wise seems to require desperate actions. Cognitive bias is beyond the imaginable when pseudoscience gets access as some kind of easy solution? Patients and and society loosing even more. It is really like pissing in strong headwind.

I would like to see the long-term costs of todays sorry state compared to economic costs of investing properly in patients and all potential benefits of people getting better/recovery. It is a given that the latter is much to prefer.

 

[rvallee]

It's a typical Landmark-spin on things.

One of her main arguments for years when trying to demonize the ME association and doctors working with patients, have been the much lower diagnostic rates of ME in Denmark and Sweden. Where the illness have been less known and almost impossible to get a diagnosis. When Sweden and RME startet to get some information out, and more people got the diagnosis, she couldn't use that argument anymore. So, of course, the solution is to write an heathed opinion piece warning swedes about 'not make the same terrible mistakes as in Norway'. You know, taking ME seriously?

"The ME-epidemic is on it's way to Sweden" - from february 2018.

https://www.expressen.se/debatt/me-epidemin-ar-pa-vag-till-sverige/