News from Scandinavia

The Danish recommendations for 'Funktionelle lidelser' by The Danish Health Authority which would also indirectly have included recommendations for ME/CFS have been delayed once again.

They were supposed to have been released today the 22nd of May. Accompanied by a press release.

The recommendations were looking beyond terrible judging from a draft from The Health Authorities. But since the release of the draft, The Danish ME forening have been working alongside a local Danish newspaper known as Ugeavisen Esbjerg to cover the story of the mistreatment of a Danish ME patient. It looks like the work has paid off, and it looks like the terrible work by the Danish Health Authority is now suddenly under scrutiny. Which has resulted in a delay of the recommendations.

For the Scandinavians you can read about the most recent Ugeavisen Esbjerg coverage here 'https://e-pages.dk/ugeavisenesbjerg/329/'. Page 1 and 14-15. Given how hopeless the situation looked just 1 month ago, the developments are very interesting. Danish Minister of Health also involved.

The recommendations are now due sometime before the summer holidays according to rumors. But I think they might be delayed even longer. Because the case has become political and has turned into a case of the blame game, and I think the Danish Health Authority has started to realize that they will receive all the blame for the mistreatment of ME/CFS patients if they don’t do something. Given how they have spent the past 20 years arguing that ME/CFS could be treated with CBT / GET and that they have been actively fighting the ME/CFS diagnosis, things don't look too good for them.

Really sick today, so can't go into more detail. If any big Danish mainstream newsoutlet decides to pick up this story things could probably get pretty wild. Fingers crossed!

 

Fingers crossed!

Alternative links to the same articles (easier to read and autotranslate):
http://www.ugeavisen-esbjerg.dk/esbjerg/ME-sagen-Minister-tager-fat-om-ME-problemer/artikel/353513
http://www.ugeavisen-esbjerg.dk/esbjerg/ME-sagen-Et-lille-lys-i-moerket/artikel/353482

 

Let's hope! This would be very good.

 

Article about ME in connection to the documentary tonight about RituxME and ME on Norwegian television.

TV2: Emilie (18) har ligget i senge sammenhengende i ti måneder
google translation: Emilie (18) has been lying in bed for ten months

Includes statements from prof. Wyller who actually underscores that ME is a terrible, serious illness..
(but I haven't heard that he's cancelled his plans on the trial on music therapy as treatment or on LP... )

 

The documentary about ME and RituxME that was sent tonight on Norwegian television was amazing.

No big news revealed, but presented the disease very respectfully, had a lot of information and gave good insight to the researchers and their work at the cancer ward at Haukeland university hospital. I really hope it will become available with English subtitles. Big thanks to the patients and doctors who participated!

ME was the first subject on the news as well on the same channel.
A boy (12) with ME tells about living with the disease. Child neurologist Kristian Sommerfelt emphasises the severity of ME.

TV2- ME-syke Truls (12) frykter å bli sengeliggende resten av livet

Seems there will be a news section about ME tomorrow too.

 

Thanks for the update. Always a relief when something like this turns out to be good. In case any of those involved read this: thanks to you too!

 

Agree!

I noticed however that Lightning Process coach Live Landmark is complaining on Facebook that she and several others with a biopsychosocial approach had been in contact over a long period with the journalist behind the documentary. Several of them were filmed/interviewed, but were cut from the film, because the TV channel wanted a focus only on illness, not getting-well stories or hope.

well, that is her understanding of it..

 

Love it.

I was also being filmed for the documentary, guess im gonna go make a facebook status and complain like an entitled "". No, cause i don`t care. The documentary was AMAZING. By far the best coverage on ME/CFS ive ever seen. Very sombering, but also very hopeful. I hope it will be available for foreigners sometime, but it will have to be bought due to copyright..

 

Great documentary giving insights to Fluge/Mella and the team and many brave patients. Exiting and thriller-like when observing the team finally opening the code and revealing the results of what patients got and response. What a downer..

And then, the amateur asking the big question of how could this happen? Point is, as many of us know the magnitude of ME, not underestimating the effect of placebo either, I really can’t understand that placebo possibly can be that strong? Just thinking of the distinct systemic aspect and the level of symptoms. So my personal and intuitive opinion would be that you really should not see great effect of placebo in this kind of disease. Or am I far out here?

We will have to wait for the publication to get hold of important nuances, but some premature and pure speculation - what could be possible explanations? I don’t see to positive reporting of subjective scores as an option, something that should be controlled by objective measures - hey PACE! A possible explanation could be that placebo responders would be patients with short(er) illness duration that would naturally and spontaneously get better? We do know there is a scarce possibility for that. Then we also do know, that you will to some extent not get homogeneous patients. If that hypothetically was the case, I guess results would be quite different. We do know for sure that rituximab have worked out (very) well for some patients. At this point Rituximab should obviously be in the drawer. But who knows in the future when getting more important knowledge of subgroups?

It is rigorous and undoubtably important work, and very pleased that they are keeping up and digging deeper. Sure that Haukeland will be a great contributor to closing in on solving the puzzle.

 

Another news section about ME from Norwegian TV2. 2 mothers to ME-sick children in the studio, as well as professor Ola Didrik Sagustad and the creator of yesterday's documentary, Pål Schaatun.

Prof. Saugstad says that the knowledge about ME varies a lot, but is improving. However, many patients lack support and feel that the health care system is not "on their team". ME is the only disease he knows of where one shouldn't recommend activity, at least not more than the patient can do. Health workers are taught to get the patients up as soon as possible. But in this case it might be the opposite that helps.

The documentary maker has now met many families and it strikes him that it is the families that has to do everything. They are left to themselves.

TV2: You can't just pull up your sleeves and make them better

 

Congratulations to you, our Norwegian friends! I really hope that ME will get the same positive attention in Norway from now on, as
it has got in Sweden since December last year. The day when "the man on the street" knows a bit about ME and PWME´s needs, I think we can say we have had a breakthrough, and progress will happen. Best wishes to you all!

 

ME has been the first topic on Norwegian TV2's main news broadcast two days in a row.

Tonight we met a family with a daughter with severe ME. They have been reported twice to the child welfare authorities. The contact person in the Norwegian ME Association for carers was interviewed as well as the health minister Bent Høie. Bent Høie confirmed that the care for ME-patients is not good enough and that the government wants more research and knowledge about ME.

He mentioned user involvement the allocations to research projects as a positive example!

Here is link to the segment and an article about the family. It says that 21% of parents to children with ME have been reported to the child welfare authorities, according to a survey.

TV2 - ME-syke Eline (17) må ligge i mørket og mates med sonde
google translation - ME-patient (Eline) has to lie in the dark and be tube fed

 

The coverage has been great too, not so much as a reference to any “controversy” or quotes from our friends Wyller, Landsmark or Vogt included Just a singular focus on the seriousness of the disease and the lack of treatment, support and understanding.

The last couple of weeks have really provided a nearly perfect ‘buildup’ of the ME narrative from the patient perspective.

 

Absolutely, and I wonder if part of the explanation is that the documentary maker spent two years making the film and that some of the journalists at TV2 have some knowledge about ME from before.

That is why it is so crucial to get more science journalists and other journalists to attend conferences, meetings and seminars about ME. After having listened in on a few lectures about ME and met with some patients, I think the biopsychosocio crowd would really struggle to get their opinions through to the journalists - at least there'd be a critical question or two..

 

Dagens Medicin: Utsatta patienter får inte träffa specialist ("Vulnerable patients are not allowed to see a specialist")
https://www.dagensmedicin.se/artiklar/2018/05/23/utsatta-patienter-far-inte-traffa-specialist/

Paywalled.

"Extremely high pressure forces ME/CFS specialist centres to say no to new patients. The need for increased knowledge of the disease is highlighted at the highest level."

Sympathetic article. Says the wait lists are too long because there are too few specialist centres in Sweden. Stockholm Conty Council will release a new agreement soon regarding diagnostics, treatments and rehab, which they believe will result in more patients getting medical care.

Mentions that the National Board of Health and Welfare are to review the current state of knowledge, and that similar regional projects have started in some parts of the country, for example in Västerbotten.

It also says that the Gottfries Clinic is considering closing. Carl-Gerhard Gottfries feels uncomfortable charging patients a lot of money, they only have one doctor working full time at the moment, the wait lists are very long, and money is very tight now when they are privately owned.

 

@Kalliope you’re doing a great job with posting everything going on btw, thanks!

There was a really nice article in Aftenposten today too, but paywalled. I’m crashing from my birthday celebration so I can’t manage to find a link or quote, but even conservative, LP-enthusiastic Aftenposten did a good job this time (as far as I could see from skimming it) and left the psych crowd alone. Let’s hope more journalists get involved and educated soon.

 

Yes, you are right, @andypants That was an excellent article. I completely forgot to post it here!

ME-patient Ragnhild recently turned 30 years old. She wished for donations to OMF as birthday presents and raised over 35 000 NOK (4 300 USD, 3200 GBP).

She explains life with ME very well.
Linda Tannenbaum from OMF is interviewed shortly. She talks about OMFs work and being optimistic for the future.
In addition ME researcher Karl Johan Tronstad (behind the trial on cell metabolism together with Fluge and Mella) talks a bit about his research and the importance of finding a biomarker. He believes we'll know a lot more about the disease in the next few years.

Bergens Tidende - Ragnhild (30) har vært syk i nesten syv år: - Det er som å ha influensa og heftig fyllesyke hver dag
As article is paywalled, I can't provide a google translation

 

How fabulous.

 

Expressen: Alma gick in i väggen när hon var 14 år: ”Jag saknar mitt liv”
https://www.expressen.se/gt/alma-gick-in-i-vaggen-nar-hon-var-14-ar-jag-saknar-mitt-liv/

Alma experienced burnout at age 14: "I miss my life"

 

Over 300 000 saw the documentary about ME on television on Wednesday.