Discussion in 'General ME/CFS News' started by Kalliope, Nov 2, 2017.
The ensuing disciplinary proceedings should be interesting.
Nina E. Steinkopf - ME patient and blogger who initiated a petition against the Norwegian Competence Center for CFS/ME and their biopsychosocial approach which got over 7 300 signatures - has written about the article on lawyer Olav Lægreid's criticism of the Norwegian Welfare and Labour Organisation pushing ME patients into "treatments" as Lightning Process.
Here's a summary in English:
She tells about a video seminar by psychologist Nina Andresen that was held same day as the ABCNyheter-article. Nina Andresen says she got well from ME by her own means (diets etc). She is now working for the Norwegian Welfare and Labour Organisation (NAV) as an advisor and this week she gave a seminar called "Followup of users with CFS/ME" for employees at NAV.
She has been promoting alternative treatments for years and the Norwegian Competence Center for CFS/ME has used her as a patient representative.
In the seminar this week she pointed to Recovery Norge as proof that ME patients get well.
Further Nina E. Steinkopf writes about what Lightning Process is, and conflicts of interests from Recovery Norge.
In July 2017 came stricter rules for marketing alternative treatments in Norway. One can no longer use statements from satisfied costumers, surveys etc in marketing. Lightning Process coach Live Landmark was one of several alternative practitioners who received a letter from the consumer authority with the updated guidelines. She deleted the stories from costumers she had shared on social media.
Two months later the Facebook page to Recovery Norge was launched. A few days later there was an opinion piece titled "Listen to this who have recovered" from Recovery Norge in a newspaper. Among those who signed were:
Helene Ragnhild Andersen, nutritionist and blogger with her own firm
Bente Denstad, LP-coach
Lise Eie, LP-coach
Berit Frivold, LP-coach
Geir Frivold, married to Berit Frivold/LP-coach
Mikkel Funnemark, married to Live Landmark/LP-coach
Kirsti Dahl Johansen, coach
Anne Stine Kraabøl, NLP coach
Live Landmark, LP-coach
Gyrid Listuen, LP-coach
Heddy Anne Torp Lund, coach
Jan Even Raastad, LP-coach
Møyfrid Tangen, coach
Shortly after stories from anonymous and recovered ME patients turned up on Recovery Norge's Facebook page, and now the same stories are shared on Live Landmark's pages via Recovery Norge. Apparently that's legal when done in this roundabout way.
In 2018 Recovery Norge wrote a declaration of support to the Norwegian Competence Service for CFS/ME with 50 signatures, including 8 from LP-coaches. The Norwegian Association for Lightning Process coaches has 9 members, 8 of them are members of Recovery Norge.
It's estimated that there are between 6 000 and 10 000 ME patients in Norway. It is not known how many of Recovery Norge's 18o members have had ME and are now back to school/job.
Nina E. Steinkopf then goes on to describe how the Norwegian Welfare and Labour Organisation has contributed to the position LP has gotten in Norway.
Among others she quotes a doctor who works for the Welfare and Labour Organisation, Georg Espolin Johnson: "Even though treatment of CFS/ME is not a part of the Welfare and Labour Organisation's area, the dysfunction following the illness is very obvious in our system. The powerlessness in not being able to do more than observing the suffering, is a strain for many employees. The Norwegian Welfare and Labour Organisation can and should contribute in spreading the testimonies from Recovery Norge to GPs".
Nina E. Steinkopf: Når NAV pusher sjamanisme
google translation: When NAV is pushing shamanism
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)...
This is absolutely horrific!!
The journalist is looking for legal help for Christin
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.
I've not even tried to translate the article, but thought I'd post this here.
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.
Original news article (audio, 2 minutes, in Swedish) here:
"A visit to the dentist ends up in court - ME-sick woman in discrimination case"
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.
Interesting. I've not heard of any ME patient who has done this before, in any country. About time, though!
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.
Separate names with a comma.