News from Scandinavia

Horrifying. This is happening with a supportive family and this reporter (do we know why she got interested?) being vigilant. How often does that happen and worse to those who have no supportive family? Or those whose parents were supportive but have passed away?

It's absurd that this can still happen, well-documented and still authorities sitting on their hands enabling the worst of it. For shame.

Then STOP ENABLING QUACKERY and let's do the science thing instead where we put smart people who want to solve the problem in charge of solving the problem, with adequate funding, instead of leaving jackasses to obstruct the process.

 

The fact that only people who became coaches, who bought in on the business, are included is such a massive red flag. Absolute disregard for all common sense in not seeing anything wrong with that.

 

There were signatures from others as well, as previous patients. But leader Henrik Vogt has no reason to get offended when critics point out that Recovery Norge is a marketing tool for Lightning Process.

 

Local newspaper Indre Akershus Blad with article about record high research allocations to hospital Ahus which is located in Oslo. The institution has received almost twice as much as the year before from the Research Council of Norway. The funding will go to among other projects on leukaemia, ME, obesity and dementia.

The article doesn't say more about the research project on ME other than the title of the project which is: Immunological disease mechanisms in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).

The allocation is 12 000 000 NOK (1 338 800 USD, 1 200 000 EUR , 1 000 000 GBP) and the receiver is the children's ward, which again means that the researcher behind is probably prof. Vegard Bruun Wyller (a strong defender of Lightning Process and psychosocial approach to ME)...

 

https://twitter.com/user/status/1208840051909632000

 

This is absolutely horrific!!

 

The journalist is looking for legal help for Christin

https://twitter.com/user/status/1209095114985017344

 

I don't understand the process by which someone goes through all the education and training to work in health care and chooses to do this. Surely thinking they are "helping" her, of course, bring out her "self-efficacy".

Misinformation has no place in medicine. It leads to horrors like this, and so much more that never sees the light of day. Just because a bunch of people have decided they should reject reality and invent their own. Clueless monsters, ripping people's lives as they run through theirs, never looking back at all the suffering they create in their hubris.

 

A letter from #MEvårdsaknas to those responsible for Christin's situation.

 

Auto-translated:

 

I've not even tried to translate the article, but thought I'd post this here.
https://twitter.com/user/status/1215284298514862081

 

Excellent Danish article. Very long and wide-ranging and written at great PEM cost to the author, Madelleine Müller. Covers general ME situation in Denmark compared to Internationally, plus the personal ME experience of the author - not positive, as you'd unfortunately expect in Denmark - and a detailed description of PEM (much longer than the excerpt below).

The article can be accessed by signing up for a free account with the paper Politiken. There's no no need to buy a sub and you can opt out of receiving communications from them (so a bit weird to not just make the article publicly available). Pity it's not legal to post the entire google-translated article here, it really is good.

Google Translate:

 

https://mevardsaknas.wordpress.com/...n-stamd-for-diskriminering-av-me-sjuk-kvinna/

Original news article (audio, 2 minutes, in Swedish) here:

"A visit to the dentist ends up in court - ME-sick woman in discrimination case"
https://sverigesradio.se/sida/artikel.aspx?programid=98&artikel=7384521

In the interview the county council representative says this is the first time, that she is aware, they have been sued for discrimination in this way.

ETA: https://twitter.com/user/status/1217392347849416704

 

Interesting. I've not heard of any ME patient who has done this before, in any country. About time, though!

 

https://twitter.com/user/status/1221054799057170432

 

That's not particularly encouraging for the "we'll look at how Sweden is doing" response from Danish medical authorities.

Though to be fair, "we'll look at how [x] is doing" is pretty much a universally bad response since failure is universal.

How long can "we need to do more research to figure out how the current paradigm can be made effective" be sustained? If more research is needed then the fact that it is the current paradigm, cocercive in some cases and facing widespread dissent, is indicative of catastrophic failure of the entire process.

Still waiting on that whole patient engagement thing. Any day now would be good.

 

Article about ME in the Icelandic newspaper Morgunbladid, unfortunately paywalled..

https://www.mbl.is/frettir/innlent/2020/01/25/veikur_i_1_800_daga/

 

Press release by the anti-discrimination organisation Rättighetscentrum Västerbotten:

Direct link to the full text document (pdf, Swedish):
https://rattighetscentrum.se/vaster.../2020/01/Information-Rättsprocess-RCV-RCN.pdf

 

Ugh. It's really disturbing how the needs of the sick and disabled are rarely, if ever, considered in medical facilities and their processes.

My dentist made renovations last year. It changed from a carpeted environment with many dividers that absorbed the noise and low lighting to wooded floors and other hard surfaces that basically amplify all the noise and installed harsh lighting. It basically went from being accidentally friendly to sick people to just about the worst choices in every regard.

The default should be to assume this. It's really not hard. Literally all it takes is to understand the lived reality of being ill and/or disabled and take those needs into account. I'm not even sure it's significantly more expensive. Yet it almost never happens, sometimes the choices are literally the opposite of that, even when explicit demands are made.

This will be the watershed moment, when those needs are a genuine priority and systematically taken into account, but it's not coming any time soon.