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
 
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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
 
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.
 
Kalliope said:
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
Click to expand...
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.
 
mango said:


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
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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
 
Kalliope said:
The answer was that, at present, the National Board of Health and Welfare cannot develop any guidelines because "the scientific basis is insufficient".
Click to expand...
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.
 
mango said:
https://www.aftonbladet.se/nyheter/a/wPLyA5/me-sjuke-basse-37-orkade-inte-leva-langre
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Google translation with major errors corrected:
"ME-ill Basse, 37, could not live anymore
d7e471f4-ed9a-4ee4-bb6c-07a92de2ad32
byJoachim Kerpner

PUBLISHED: TODAY 09:45
UPDATED: TODAY 13:35
NEWS
Sebastian "Basse" Ekehov, 37, loved to ride cars and drive folk races.

The debilitating disease ME drove him to immobility and suicide.

"He felt cut off at the ankles," says Anna Ekehov, 36.

Three ME patients (ME stands for myalgic encephalomyelitis, or postviral fatigue) died between January 25 and February 2 , according to the Swedish National Association for ME Patients. One of them was Sebastian Ekehov in Smedjebacken .

Basse and Anna met at the car test in 2013, where both worked. None of them knew it at the time, but that summer Sebastian participated in his last folk race contest.

"He was already ill when we met, his stomach was messed up" says Anna.

The following year, when they had bought a villa in Smedjebacken, Basse was totallywwiped out for four months. Three years went by with various health contacts and diagnoses. None of them made sense. . In the spring of 2017, Anna heard about ME and everything fell into place.

- I started reading about it, and it was striking. Every symptom was present. The brain fog, exertion-triggered deterioration, everything. When I showed Basse he nodded and said "yes that is it ", Anna remembers.

Basse never received an ME diagnosis. Anna tried to get her husband's doctor to write a referral for an ME investigation in Stockholm. There are the only two clinics in the country that do such investigations.

- But the Dalarna Region stopped the referrals. It feels like the regional management has gone out and said that this disease does not exist, says Anna.

ME cannot be cured. Basse was constantly getting worse.

- In the summer of 2018, we were a week at a folk race festival in Motala. He never recovered from it. His body began to swell, he couldn't grasp things with his hands because his fingers were so swollen. His muscles weakened, he couldn't open a bottle himself. He became increasingly obese and dragged himself between the bed, computer, bathroom and kitchen, says Anna.

Basse was happy and at the same time sad in the summer of 2019, when the oldest daughter and wife Anna drove the race together for the first time.

- He was glad he got to see us. But he wanted to help with the mechanics when the girl broke the car. Instead, he sat in his wheelchair and couldn't do anything. He was the one who always was first with the tools otherwise, says Anna.

"Wanted to give the 3-year-old daughter some last good memories"
He spent much of the day lying in bed. Without hope that he would ever recover from the chronic illness ME, he was no longer able to cope.

On February 1st Sebastian Ekehov took his life. He had been planning this for a long time.

- The day before, he had a great day with the 16-year-old. He put energy into playing with the three-year-old ten minutes in the evenings, in a way he hadn't done before. He wanted to give her some last good memories. The last night he called around to relatives, not to be stopped, but to make sure everyone was there for me and the children.

- Basse was waiting for Christmas, New Year's holidays and the three-year-old's birthday. Now we can look forward to the holidays before we go into this time of grief every year, ”says Anna.

After the suicide, everything was chaos.

- But after a few days, when I saw the extent of everything he had prepared, all the happy fond memories he was trying to make, I became so humbled that he was thinking of us till the very end. I love him more now than before. He had been thinking so much of us in this disaster that I had long anticipated would come.

- Basse was hurting everywhere. He's got some rest now, relieved of the torments, says Anna.

But that her husband never got a diagnosis of the disease on paper, upsets her.

- If he had been diagnosed, his death would have ended up in a completely different place in the statistics: another one who had died as a result of ME.

Anna Ekehov is critical of the politicians in the Dalarna region stopping referrals to ME investigations in Stockholm:

- They play with people's lives.

The Regional Board Chairman Ulf Berg (M) says to Aftonbladet:

- Specialist care referrals for highly specialized care are not currently written, as there is currently no specific evidence-based treatment of ME that can be offered by any specialist unit.

Eva Nordin-Olsson, Head of Operations at Mora Health Care Center and member of a working group that has developed new care guidelines, says:

- It is not true that patients have not been referred to the Bragé clinic and Stora Sköndal in Stockholm. However, it has been unclear and not uniform. It has been difficult to get a referral there so unfortunately patients have been bullied around the region. The Dalarna Region has just developed a new care routine for this patient group and we now hope that patients with ME will receive better care."
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The Dalarna Region has just developed a new care routine for this patient group and we now hope that patients with ME will receive better care."
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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

Google Translate said:
It is too damn bad that healthcare is unable to support these patients. It had actually been an easy thing to do. A doctor does not need to know or know everything to support a patient.

But there is one thing I think is even more devilish. And it is all people who spread the myth that it is an "incurable" disease and that it cannot be healed because it is a "chronic" disease.

It makes sufferers see a pitch-black future. THAT takes away all hope from all the affected people. THAT makes sufferers depressed and suicidal.

I want to spread hope instead. I don't think it is possible to get well. I know.
Click to expand...

Another example/thread here.

ETA: Another example:
Google Translate said:
[...] The body is magical. Man is one of the absolute most durable animals on earth. We can mistreat ourselves for 30-40 years before we break. And if we have been healthy - gotten sick - then my belief is that we can get back to health, at least really good if not 100%.

The problem is that you need to choose the advice that works. You need to have energy when you are fatigued, and you need to find the will to try again, the 3000th time ... Then it feels nice if someone tells you that it is genetic, it is not possible and that you have not succeeded is nothing strange.

You are now free. No need to do anything. Guilt & shame free. It was not you who failed, it was impossible. After all, there's nothing to do ... in the meanwhile your life is running away from you.

But what if there is a solution. Imagine if others have tried it and succeeded. What if it's your turn next time?

<3

To all of you who have decided that it is genetic and impossible. I respect your decision about your life. But please do not tell us this in the comments - it does not lead to those who want to try again ....

I am convinced that it is possible.
But I need help from everyone who has succeeded.
Together is a good word.

So now I gather everyone who has recovered from ME.
Do you want to be a part of solving this? Or at least contribute a little improvement? I dare fail, but I refuse not to try.

We need to gather everything that works.

I'd rather try and fail than not try for the fear of failure.

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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/
 
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Trish said:
I agree. They seem to be trying to bring the two irreconcilable sides together and just producing a variety of BPS fudge.
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Yep. Sometimes (and more than just occasionally) the truth is not some compromise of two or more competing claims, it can reside entirely in one claim.

mango said:
The amount of guilt mongering is absolutely nauseating
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mango said:
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.
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And a big thanks to Mr Henrik Vogt for his work in creating this insane vile situation. :mad:
 
Snowdrop said:
Any idea what centre this might be? I can't think of a chronic illness rehab centre dealing with ME anywhere here.
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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 :)
 
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