News from Scandinavia

Anders_Vang said:
They also refer directly to a couple of statements by the Minister of Health at the recent open consultation in parliament on ME, including the ill-informed claim that Long Covid and ME differ in that the former entails a viral trigger
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I have a notion that I keep seeing this statement from a variety of outside sources (people with no previous association to ME).

Where are they getting this idea from I wonder?

I'm glad this author made a point of correcting that misinformation. It would seem to need rather more wide circulation. A talking point for anyone in advocacy facing the media.
 
strategist said:
@Anders_Vang could you post a Google translation of the article here?
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I would, but afraid it would violate copyright and forum rules to post the full text, sorry... The link above does grant free access, although with the hassle of having to create an account.

Snowdrop said:
I have a notion that I keep seeing this statement from a variety of outside sources (people with no previous association to ME).

Where are they getting this idea from I wonder?

I'm glad this author made a point of correcting that misinformation. It would seem to need rather more wide circulation. A talking point for anyone in advocacy facing the media.
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It's a troubling idea indeed. In this particular case, I think it can be put down to the Minister simply not having a clue -- he came across as helplessly unprepared at the open consultation. The matter of relations between ME and Long Covid was also not in his talking points (since released publicly) so he would have been speaking from his own, very limited understanding.
 
Has anybody even seen anything lately from Greenhalgh? Hard to say being blocked but she seemed to have completely lost interest with Long Covid now that it's hard to argue the huge overlap with ME. Haven't seen her name mentioned on anything in months.

I can't imagine what Henrik will be talking about there. Total mystery.

 
Mic Drop – support gala for ME (stream) in Sweden
June 18, 7-9pm local time.

https://www.presensimpro.se/produkt/mic-drop-stodgala-for-me-stream/
Auto-translate said:
Mic drop your ME-life with Elias Bjärgvide - A gala in support of ME research.

On Friday 18 June, our improvised hip-hop musical returns with a guest from the Presens family - Elias Bjärgvide!

Elias has been a beloved improviser, course leader and administrator at Presens.
He's brought a lot to the table, both backstage and on!
But it's been a long time since we got to improvise together, the reason is not that the pandemic didn't let us, no Elias was struck by the invisible disease ME a little over a year ago and hasn't been able to do much since.

As ME research has not been a priority despite the large number of patients affected, we at Presens felt that we wanted to draw attention to this.

During this evening we will pay tribute to Elias by performing "Mic drop your ME-life", a version of "Mic drop your life" which is the show Elias performed with us between 2018-2020.
In the past, we have had a celebrity on stage with us who has seen his life staged with a musical.

But this time it's Elias we're talking about. We are highlighting the situation for an ME sufferer. In true gala spirit, we will be raising money to be donated to ME research. The aim of the evening is to raise as much money as possible while laughing together into the summer.

The gala evening will be performed live at our theatre PIK for a small audience, and broadcast live on our Youtube channel.

So no matter where you are in the country, you can join us for this evening!

Now we're highlighting the research and at the same time biting off the first show in a very very long time!

Price: free!
To get the link, book a free ticket and then get the link for the evening's stream sent to your email on your ticket.

Translated with www.DeepL.com/Translator (free version)
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Paywalled editorial:

Isobel Hadley-Kamptz: Vården som i dag ges till ME-sjuka är ovärdig ett modernt land
https://www.dt.se/logga-in/isobel-h...ges-till-me-sjuka-ar-ovardig-ett-modernt-land
Auto-translate said:
Isobel Hadley-Kamptz: The care currently given to ME sufferers is unworthy of a modern country

To get to the Bragée clinic, the only remaining specialist unit for ME, you either have to live in Stockholm or be lucky with your home region. Elin and others in Dalarna don't.

The Dalarna region, which has no specialist care in this area, refuses to send referrals there, regardless of what individual doctors may want for their patients. They justify it by saying that there are no national guidelines for ME care, and that the treatment lacks evidence.

Just last February, the region's refusal to relieve his severe pain led to the suicide of Sebastian Ekehov, a father of toddler from Smedjebacken, who had ME. Two years ago, the Dalarna region claimed it would develop its own guidelines, but nothing has improved since then. [...]

I come back to Elin's story, about how she was referred to a psychologist who thought she should "stop looking for answers, stop nagging about gamma globulin, and learn to live with the disease." So the care you get is aimed at getting you to stop demanding care.

In the midst of all this darkness, there may yet be an unexpected light. ME is very similar to the condition known as post-covid, in which sufferers continue to have problems long after the viral infection has passed. Because covid has become so widespread, and postcovid so common, it offers both great opportunities for research funding and, hopefully, less derisive dismissal of sufferers.

Sadly, of course, there are also those who dismiss even postcovid as something that's just in the mind.

Translated with www.DeepL.com/Translator (free version)
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mango said:
A month ago I started seeing reports on social media by pwME, saying that Bragée ME-center are no longer offering video calls or home visits, aren't booking any new appointments, aren't answering the phone, aren't accepting new patients (referrals are rejected or put on indefinite hold?), and so on.

What is going on? I haven't been able to find any info about this on bragee.se, nor on Bragée's Facebook pages.

I checked the official Stockholm Region post room ("diarium"), and there's an entry from 3 weeks ago about a followup regarding the contract between the region and Bragée Rehab. I don't know if this is related or not.
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Someone requested the follow-up document from the post room, and shared it with me. There's nothing about contract negotiations or anything like that. There's just the 2020 numbers, for example:

how much money the clinic has received from Region Stockholm,
number of patients (1647),
patients from other regions (34%)
visits per patient (11),
adverse events (16),
employees/professional roles (7 specialist doctors, 5 nurses, 2 physios etc),
referrals received (1252),
referrals accepted (901),
waiting time from referral to first visit (70),
discharged patients (316).
 
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(Not specifically about ME but still 100% relevant, for obvious reasons.)

Very important opinon piece by journalist Agnes Arpi, about how shifting accountability from the individual healthcare professional to the organisation has eroded patients' legal rights when it comes to reporting harms, abuse, discrimination etc.

I have a lot of experience with this myself, and it's just as bad as it sounds :(

I vården ansvarsutkrävs bara ”systemet”, aldrig individer
https://www.altinget.se/vard/artikel/i-vaarden-ansvarsutkravs-bara-systemet-aldrig-individer
Auto-translate said:
In healthcare, only the "system" is held accountable, never individuals

When no one is to be blamed, only the "system" can be blamed, but it is not the "system" that yells at a woman giving birth to shut up. Agnes Arpi on weakened accountability in health care. [...]

Complaints handling has changed several times in the last decade. As a result, patients' rights have deteriorated significantly. [...]

Patients can no longer complain directly to the Health Care Accountability Board, HSAN, which has also stopped "flagging" and giving warnings to healthcare professionals.

In addition, since 2018, anyone who feels they have been mistreated must complain directly to the care provider. The care provider investigates itself. Only then, and in serious cases, can the Health and Social Care Inspectorate (IVO) step in.

IVO, in turn, investigates relatively rarely and does not impose any disciplinary sanctions on care providers. The function of patient committees is to inform and mediate, but they are completely toothless when it comes to enforcing accountability. For the individual, the possibilities for independent review are very limited. [...]

You have to complain to the person who harmed you

Say you've been told you're imagining things or just want drugs when you go to a gynaecologist for acute pain, then it's the gynaecologist you should turn to with your complaint. It is the same place that hurt you that should take your comments and then, ideally, review its procedures. [...]

The scapegoats disappeared to increase patient safety, they said. What happened was that safety was undermined while inappropriate staff were given even more protection. [...]

For most, a complaint remains a mere punch in the air. A futile fight for an apology.
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Midnattsol said:
This is about mental health care in Norway, but their story about the undocumented treatment "Basal exposure therapy" and how it's been hyped based on one (!) badly designed study sounde familiar. Takes up some points we are familiar with: Bad study design, hype and patient harm. Could have been written about LP and ME/CFS.

Patients with mental disorders are offered undocumented treatment. That is unacceptable.
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Yes, this could have been written about LP and ME as well! Thanks for sharing!

I like their conclusion and think it could be good to keep in mind when discussing LP. I see some people claim that LP might be useful for people with psychological illnesses in comparison to people with ME. This makes me a bit frustrated because of course psychological illnesses should be offered documented treatments just like everyone else.
Patients with severe mental disorders are entitled to the best possible treatment.

This does not necessarily mean medication. Fewer than 50 percent of patients in the specialist health service use it. But that the methods are best documented both in terms of positive and negative effects.

We would never accept a different attitude in other parts of the health care system.

We think it is unacceptable in mental health care as well.
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Kalliope said:
I like their conclusion and think it could be good to keep in mind when discussing LP. I see some people claim that LP might be useful for people with psychological illnesses in comparison to people with ME. This makes me a bit frustrated because of course psychological illnesses should be offered documented treatments just like everyone else.
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Agreed 100%. I feel people sometimes become forced to say it so they don't seem too "set against" LP, saying it's pure BS and not good for anything and we get the false accusations about not understanding psychology.
 
A month ago some Norwegian scientists claimed they had found the biological explanation for chronic fatigue, and that this proves fatigue is not about being lazy. I'm quite sure we discussed it on the forum, but I can't find the thread..

Anyway, it was not in connection with any recently published papers, but it still received a lot of attention in the media here.

ME was not included among the fatigue illnesses they had studied. Today Henrik Vogt is criticising the researchers in the media, saying they are adding to the stigma surrounding fatigue by claiming it's physiological.

The article refers to SUS, which is the name of the hospital where the fatigue researchers work.

Quotes:
That one can measure this says nothing in itself about the cause, and does not mean that mental processes are unimportant, he says.

The attitude he means to trace at SUS, he says, is widespread. In his archive he has several newspaper clippings from home and abroad with headlines such as " Fibromyalgia a 'Real Disease,' Study Shows " and " First biological proof that ME is real found by scientists ".

...
- In the worst case, this way of arguing can contribute to more stigma. What about everyone who has a condition where one does not find anything in the body? Are they lazy, or are they just imagining things, Vogt asks rhetorically.

NRK: SUS får kritikk for måten dei presenterte forsking
google translation: SUS is criticised for the way they presented research
 
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Kalliope said:
A month ago some Norwegian scientists claimed they had found the biological explanation for chronic fatigue, and that this proves fatigue is not about being lazy. I'm quite sure we discussed it on the forum, but I can't found the thread..
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I think this thread is related to the claim - Stavenger University - heat shock proteins and hypocretin
Interleukin-1beta, heat shock protein 90alpha, and hypocretin-1 in chronic fatigue (not CFS) (PhD thesis), 2020, Bardsen
 
mango said:
A month ago I started seeing reports on social media by pwME, saying that Bragée ME-center are no longer offering video calls or home visits, aren't booking any new appointments, aren't answering the phone, aren't accepting new patients (referrals are rejected or put on indefinite hold?), and so on.

What is going on? I haven't been able to find any info about this on bragee.se, nor on Bragée's Facebook pages.

I checked the official Stockholm Region post room ("diarium"), and there's an entry from 3 weeks ago about a followup regarding the contract between the region and Bragée Rehab. I don't know if this is related or not.

@Bjorn Bragee, would you like to comment on this?
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Any news? Is it still the same?
 
Wyva said:
Any news? Is it still the same?
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No new info, no. But I've seen a few comments lately on social media, people saying they have been invited to "planning appointments" (in person, no videocalls), so maybe something has changed, or is about to? I don't know.
 
Hur kan samhället stänga alla dörrar för min sjuka dotter?
https://hejaolika.se/artikel/hur-kan-samhallet-stanga-alla-dorrar/amp/

Google Translate, English ("How can society close all the doors for my sick daughter?")
Auto-translate said:
Ann-Marie Högberg has had a good knowledge of Swedish welfare, through a professional life as a nurse, local councillor and chairwoman of the union. But at the age of 72, she has discovered that the safety net she took for granted no longer exists.

She is shocked, and describes it as being met by a wall: a wall where things are readily allowed to go wrong, as long as they do so according to the rules.

A few years ago Ann-Marie's adult daughter fell ill.

Her story is about being bounced between the health centre (which prescribes sick leave), the Social Insurance Agency (which refuses sick pay), the Public Employment Service (which can't offer help, because she has no capacity to work), and the social services (which refuse income support because employment is available).

No income - denied all support

Today, her daughter is on full sick leave, has almost no energy, has no income and is denied all benefits and allowances.

- How is it possible that society closes all doors when you are in a desperate situation?

[...] Ann-Marie's adult daughter has ME/CFS.

Translated with www.DeepL.com/Translator (free version)
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She is shocked, and describes it as being met by a wall: a wall where things are readily allowed to go wrong, as long as they do so according to the rules.
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This is a great line, it really captures how everything is whitewashed since they either got approval to cheat or were arbitrarily cleared of even "zero tolerance" faults. Legal abuse of statutory authority or misconduct is first and foremost legal, everything after that becomes irrelevant if those in charge are OK with arbitrary exemptions for things they like. Everything is allowed because it's "not medical", but it's considered not medical exactly because everything is allowed, circular failure.

But it is not society that has closed this wall, it's medicine, sovereign in its domain and ignoring everyone and everything in the process. It needs to be blamed, it's the only way for the lesson to stick and stop the cycle.
 
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