News from Scandinavia

The Norwegian Prime Minister Erna Solberg had a meeting about ME yesterday.

The Norwegian ME Association, Rogaland County has made a short seminar on how to adapt school and teaching for pupils with ME (The tool box). The meeting was primarily about the Tool Box, but they had time to discuss a few other things as well.

This is what The Norwegian ME Association, Rogaland County writes in their Facebook post (hastily translated):

Finally the day arrived yesterday for the meeting at the Prime Minister's office.

Prof. Kristian Sommerfelt, psychologist Ketil Jakobsen, general secretary in the Norwegian ME Association Olav Osland, leader for the ME Association, Rogaland County Åse Marie Lønning and 2. leader/treasurer in Rogaland County got a half hour meeting with Erna Solberg.

The setting for the meeting was the school project on adapted teaching for pupils with ME. The Prime Minister got a closer introduction to the project and expressed that she believes this is a good and important project.

There was also time for more general exchange about ME and challenges in connection to the disease. Topics that were addressed were how ME patients are met, PEM, diagnostics and how important it is to separate ME from fatigue.

The Prime Minister showed both great respect for and knowledge of the subject.

Thank you Erna Solberg for a very good meeting, for your hospitality and for your engagement in the ME cause!



ETA: In case anyone wants to share/like/comment on Twitter
https://twitter.com/user/status/1225357957921157122

 

The article is from 2011, just so you know

 

Trigger warning: suicide











The Swedish newspaper Aftonbladet has an article about how society has let ME patients down. There has been three suicides recently between 25th January and 2. February. Kerstin Hiling from the Swedish ME Association says they know of nine suicides since December 2017, including assisted suicides. The only specialised wards for ME patients in Sweden are in Stockholm, but the most severely affected cannot travel there. She says that a massive effort is needed to increase the knowledge in primary care, so that doctors know what to look for. Standard assessment seldom reveal anything, but listening to the patient's story and what happens after exertion helps in diagnosing.

Aftonbladet: Tre ME-sjuka har begått självmord på drygt en vecka
google translation: Three ME patients have committed suicide in just over a week

 

There is a paywalled feature article in the Danish newspaper Weekendavisen about ME. If anyone has access to the whole article, it would be interesting to hear a summary. The title is a quote that says "a fashionable form of hypochondria"

https://www.weekendavisen.dk/2020-6...C7k1H9UOZnjxUS-wwWLCoNEmTTMj1lfh2IVIJqNXtlzDw

 

I don't understand how anyone can think ME is a form of hypochondria, unless they are very ignorant. The patients aren't overly concerned about having some disease, they are sick and having symptoms and suffering from substantial impairment. Believing that you have some illness will not magically make disability and symptoms come into existence.

Is belief in psychogenic illness a kind of psychosis? I sometimes find it difficult to reject this possibility.

 

I always found it highly suspicious that in the areas where this idea seems to have developed many, if not all, of the therapists had themselves to have undergone therapy.

Makes you think.

 

3 patients that we know of. Most are simply erased from society. Most causes of suicide are kept secret, usually for good reasons but it also erases many such tragic circumstances of negligent deaths. Fitting that the next article you posted literally explains the reasons why that happens. It's so fashionable that people are literally made as if they never existed in the first place.

And to those promoting the ME-BPS ideology: this is all your fault by now. Decades of pseudoscience and contempt for sick vulnerable people and this is what you caused, are still causing. Those deaths are blood in your hands and I blame you for all the suffering you are causing. History will, too, do not be mistaken about that.

 

https://twitter.com/user/status/1226094402965266434


Karin Alvtegen: Det pågår en vårdskandal
”Chockad att det kan gå till så här i Sverige”
https://www.aftonbladet.se/nyheter/a/awBgla/karin-alvtegen-det-pagar-en-vardskandal

 

That was a very good follow up article. The author Karin Alvtegen is an amazing ambassador!

In addition to telling about his own struggle, Alvtsen also engages with other ME sufferers. On Monday, she wrote a letter to the National Board of Social Affairs, which she lets Aftonbladet publish:

“Hi Jeanette, this past weekend another two very difficult ME sufferers have chosen to end their lives. A woman and a man, in two completely different places in the country. A relative will soon be serving 1.5 years in prison for manslaughter after helping his severely ME-sick wife to end her life. Common to all is the lack of or incorrect care and the lack of community support. Who on the National Board of Health and Welfare is responsible for the development of guidelines for ME? "

The answer was that, at present, the National Board of Health and Welfare cannot develop any guidelines because "the scientific basis is insufficient".

Here's link to google translation of the article:
Karin Alvtegen: A scandal is happening

 

https://www.aftonbladet.se/nyheter/a/wPLyA5/me-sjuke-basse-37-orkade-inte-leva-langre

 

People died, and many more will, because you refuse to do your job, therefore that's justification to continue not doing your job? Medical authorities are a legal monopoly, if they refuse to do their job literally no one else can. This isn't just refusing to prevent people from dying as a result of willful neglect from medical authorities, it also blocks anyone from preventing those deaths and all the suffering that willful neglect creates.

It's this exact hopelessness that creates most of the suffering from this disease, the willful neglect, the indifference to human lives, even the contempt reserved for those whose inflicted despair was too much to endure. Literally any help would be meaningful and even that's too much to ask even as people die as a consequence.

"Yes, we could try helping these people, but we don't want to and you can't make us lalalalala" is going to age particularly bad. It already looks absolutely ghoulish.

 

Google translation with major errors corrected:

 

Do they ever just listen to themselves?

So you can on!y do something to help someone if someone else has written instructions for you?

I have zero medical training, yet if someone collapsed in front of me I would try to help. Even if it just to call an ambulance and try to keep em going till help arrives. I won't just stand there because no one's told me to dial 999 (or whatever the local number is where you are).

This is a health service in one of the most advanced countries in the world & you can't do anything to alleviate someone's suffering unless someone writes instructions for you?

You hope that patients will now receive better care? Really? That's the best you can do?

I'm not just having a go at Sweden. They're all as bad.....

 

The recent series of articles in Swedish media about suicides among pwME seems to have triggered an "interesting" reaction among some alternative/complementary/functional medicine practitioners and supporters, mould activists etc, of whom many have very loud voices on social media...

In short, their message is that everyone who has ME can recover, if only they want it badly enough, if only they try hard enough. The most commonly recommended methods are healthy eating habits, positive thinking, "detox" (expelling radiation, getting rid of metal contamination etc), stress reduction, supplements, mould avoidance, breathing techiques, "guided self-healing" etc.

There is a lot a lot of blame and judgement in their narrative, accusing pwME of making/keeping themselves sick through "refusing to accept that recovery is possible", "being afraid and/or unwilling to recover", "playing a victim", smoking, guzzling coca cola and binging on biscuits and crisps and food full of chemicals etc. The amount of guilt mongering is absolutely nauseating

Some of them have gotten media attention over the years. Others are actively lobbying politicians to start a ME clinic along these lines, using a Canadian rehab center for chronic illnesses as a model (it supposedly has a 70-80% recovery rate), claiming that this is the way to get all pwME back to work etc.

There's lots of business and money involved, because of course they have private consultations to sell, as well as tests, detox kits, supplements, air purifiers etc etc etc...

And of course there are lots of articles claiming to be guides to effectively treating or curing ME. Here's two random examples of what that might look like:
https://www.annahallen.se/lathund-mecfs/
http://www.loveandlighthealing.se/kronisk-trotthetssyndrom-mecfs/

Lately I've noticed an escalation. Some of them are now openly blaming patient organisations like RME as well as independent ME activists for the suicides and the fact that people don't recover. Accusing them (us!) of lying when stating the scientific facts about the chronic nature of the disease and how very few % fully recover etc; even accusing them of making pwME suicidal.

As an example, a public Facebook post:

Code:

https://www.facebook.com/photo.php?fbid=10221283686503609&set=a.4745683161934&type=3

Another example/thread here.

ETA: Another example:

This is obviously not new, but it has definitely escalated lately. Hugely problematic, in my opinion


There are ME advocates who are doing a great job indirectly responding to this by, for example, publishing blog articles on how to best support pwME who have suicidal thoughts (based on Lifeline Crisis Center's article by Dr Lily Chu) and raising awareness about this on social media etc:

Nattsvart? Om självmordsprevention vid ME…
https://mitteremitage.wordpress.com/2019/03/17/nattsvart-om-sjalvmordsprevention-vid-me/

 

Any idea what centre this might be? I can't think of a chronic illness rehab centre dealing with ME anywhere here.

 

I've never seen the name of the center mentioned, but I don't follow these people and I'm not in any of their FB groups. I haven't seen any source for the claimed recovery rates either. She seems to be quite active on Facebook, you could maybe ask her there? Here's a post that mentions the rehab center.

And please do let us know if you find out more

 

Thanks for responding @mango
I'm not on face book but I had a look at your link and couldn't find anything there that was specific to pin down.

The only place I can think that they may be referring to is the BC clinic: http://www.bcwomens.ca/health-info/...ic-fatigue-syndrome-(me-cfs)#What--is--ME/CFS

But that's by no means certain and they don't publish any statistics on their site.