News from Scandinavia

There will be an open hearing on ME/CFS and infection triggered fatigue syndrome in the Swedish Riksdag on 27 May, hosted by the Social Affairs Committee. It will be available to watch online.

The Riksdag is the highest decision-making assembly in Sweden, it's "the parliament".

https://www.riksdagen.se/sv/webb-tv...agning-om-sjukdomen-mecfs-och_H8C220210527ou1

riksdagen.se auto-translate said:
Open hearing on ME/CFS and infection triggered fatigue syndrome

On 27 May, the Social Affairs Committee will hold an open hearing on ME/CFS and Infection-Related Fatigue Syndrome,

Time: Thursday 27 May, 9.45-12.00.

(Seating in the First Chamber is limited due to the corona pandemic).

The hearing is open to the public and the media and can be viewed live or afterwards via the Riksdag's web TV. Please note that the number of seats is limited due to the corona pandemic.

Preliminary programme

Most participants will participate remotely.

9.45 Kristina Nilsson (S), Vice-Chair of the Social Affairs Committee

9.50 Björn Eklund, ME/CFS patient

10.00 Kerstin Heiling, President of the National Association for ME Patients and their Families

10.10 Jonas Axelsson, Associate Professor and Specialist in Internal Medicine and Immunology, Amelie Clinic

10.20 Björn Bragée, pain physician, Bragée clinics

10.30 Per Julin, MD, Specialist in Rehabilitation Medicine, Karolinska Institutet

10.40 Anders Rosén, Professor Emeritus, Linköping University

10.50 Désirée Pethrus, Regional Councillor for Health Care Development, Stockholm Region

11.00 Anna-Lena Hogerud, Regional Councillor for Health and Medical Care, Region Skåne

11.10 Thomas Lindén, Head of Knowledge Management for Health Care, National Board of Health and Welfare

11.20 Questions from members

11.55-12.00 Acko Ankarberg Johansson (KD), Chair of the Social Affairs Committee

Translated with www.DeepL.com/Translator (free version)
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I'd be interested in knowing how they chose the speakers...

Björn Eklund is the (former?) ME patient who wrote a book about his recovery from ME, apparently thanks to Rituximab (Kolibri, Norway) and other off-label treatments such as antivirals (Red Clinic/Ameliekliniken, Jonas Axelsson).

Kerstin Heiling from RME is an obvious choice, of course. I hope she will be honest about the problems pwME in Sweden are facing, and not try to gloss things over to make things sound "hopeful, optimistic and positive". I hope she will keep a very firm biomedical focus during this talk, not focus on how important she believes psychosocial support etc is (she's a retired psychologist, does not have ME herself). I hope she will include the severely ill and the very severely ill in all aspects of her talk.

Jonas Axelsson. Hmm... Head of a private ME + long covid clinic. As you already know, he recently had to pause/cancel? one of his research studies because he hadn't gotten ethical approval before starting to collect samples etc. He's known for generously offering lots of different off-label treatments and medications to pwME and pwLC, as well as recommending brain retraining programs (which has made Gupta, DNRS rewire etc popular in some subgroups of the patient communities, which in my opinion is hugely problematic on so many levels). Axelsson claims that the treatments he offers are completely individual, based on each person's illness history, symptoms, tests etc. However, judging by what people share on social media, it seems to me like they are all getting pretty much the same stuff... For what it's worth, I believe he genuinely means well.

Björn Bragée. Hmm... What will his talk be about?

Per Julin and Anders Rosén. No worries there, I'm looking forward to listening to their talks :)

Anna-Lena Hogerud from Region Skåne. I don't know anyhing about her, but as you perhaps remember from our discussions about Region Skåne's new clinical guidelines for ME/CFS, the BPS view has been very strong in Skåne historically. What will her talk be about?

This hearing could go either way,... I'll be keeping my fingers crossed hoping for the best. :nailbiting:

(Edited to add the link, sorry!)

This is discussed further here:
Sweden: Open hearing on ME/CFS in the Riksdag 27 May 2021
 
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RME Sverige on YouTube said:
What is life like when you're living with ME? Anna, Emilia and Elias share some of their thoughts as our 2021 campaign takes off. This is a sneak peak for what is to come. More videos will be posted through out the year, highlighting #livingwithME, #LEVAmedME.
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Sweden. Did you know that you can contact the 112 emergency number through text messages/sms? You have to register first, though.
SOS Alarm said:
112 for speech and hearing-impaired
If you are deaf or have a speech or hearing impairment, you can contact 112 via text phone or the SMS112 service. Those who are temporarily speech-impaired, for example following an operation, can also temporarily use the SMS112 service. The SMS112 service is only open to those who are deaf or have a speech or hearing impairment, and you then need to be registered via SOS Alarm’s website.

Read more about the SMS112 service and how to register here: https://www.sosalarm.se/sprak/english/sms112-english/
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In Swedish here: https://www.sosalarm.se/trygghet/viktiga-telefonnummer/112/112-for-tal--och-horselskadade/
https://www.sosalarm.se/trygghet/viktiga-telefonnummer/112/112-for-tal--och-horselskadade/
 
There's a number of news articles today about Mia Skäringer and her autobiography that was published a few days ago. She's a famous Swedish comedian, podcaster, actor, radio presenter, script writer etc.

Skäringer: "Jag vill låta sorgen värka ut"
https://www.gp.se/kultur/kultur-nöje/skäringer-jag-vill-låta-sorgen-värka-ut-1.47822217

Google Translate, English
Göteborgsposten Auto-Translate said:
Skäringer: "I want to let the grief heal"

"Why is she so angry? She used to be so much funnier." Mia Skäringer opens her autobiography with the question she often faces - and talks about abuse and her diagnoses of ME and bipolarity.

- 'I want to show my whole self and let the grief heal,' she says.

[...] Mia Skäringer stresses that although her variant of bipolarity is of a "lighter kind", she has great respect for the illness.

- My mother has gone undiagnosed with what is probably a much more serious form of the same illness her whole life. So I've been up close and personal with her night-black depressions and experienced how she didn't want to live.

The diagnosis of ME (myalgic encephalomyelitis, a neurological chronic disease sometimes called chronic fatigue syndrome) is harder for Mia Skäringer to accept.

- When my doctor said it, I felt 'I can't really accept this'. But I will continue to be examined and it is a good explanation for why my body works the way it does. Some days I can't even have a performance review and a phone call scheduled at the same time without feeling like I'm going to collapse. It's really hard to explain. Your body hurts so much that you have to lie down and rest for a few hours.

The stigma surrounding women and burnout is something she is keen to highlight.

- It often gets so sloppy with women and burnout. That particular word, it can contain so much and there's always a longer story.

Translated with www.DeepL.com/Translator (free version)
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I find it a bit confusing that she says she's been diagnosed with ME, but keeps talking about burnout? Burnout, or exhaustion disorder ("utmattningssyndrom", previously "utmattningsdepression"), ie work-related stress/exhaustion, is a different diagnosis in Sweden.

Same article published here as well:

Skäringer: "Jag vill låta sorgen värka ut"
https://www.aftonbladet.se/nojesbladet/a/dly4nz/skaringer-jag-vill-lata-sorgen-varka-ut

Skäringer: ”Jag vill låta sorgen värka ut”
https://www.hd.se/2021-05-21/mia-skaringer-talar-ut-i-nya-sjalvbiografin
 
In the Swedish newspaper Aftonbladet today:

Elias, 27, fick ME-diagnos efter covid-19
https://www.aftonbladet.se/nyheter/a/PRMkd5/elias-27-fick-me-diagnos-efter-covid-19

Google Translate, English
Auto-translate said:
Elias, 27, was diagnosed with ME after covid-19

A year ago, 27-year-old Elias Bjärgvide was working out at the gym five times a week while holding down three jobs.

Today, he is on full-time sick leave and spends 90% of his life in bed.

- I have to choose whether to shower or trim my beard, says Elias [...]

Started with colds

Elias has always been an active guy with a lot of balls in the air. He's done magic, improvisational theatre, podcasts and worked as an after-school leader. But in 2018, something happened. Elias caught a cold that wouldn't let up. It always started with a little itch in his throat and an unusual tiredness. The sore throat went away, but the fatigue lingered for weeks.

- But then I was well again for a few weeks and then it came back. I didn't understand why my colds were so long-lasting. It didn't feel normal.

Elias sought treatment to find out what was wrong with him. The tests showed nothing and the doctors explained that he worked with children and it was no wonder he got colds from time to time. Maybe he was stressed and exhausted after working with so many different things?

- I felt stressed about getting sick - it wasn't the stress itself that was stressful," says Elias.

Coivd-19 triggered fatigue again

A year later, Elias felt at his best. The unusual fatigue was gone and he started working out at the gym five times a week for his health.

- Then I got sick with covid-19 in March last year, but not that sick. The usual with fever and cough. But after I got better, that familiar fatigue from 2018 came and I was bedridden again.

"Like having constant flu"

Many people who get ME/CFS only get it after one or more common viral or bacterial infections. It can be anything from colds, respiratory infections, flu or covid-19 that triggers ME/CFS. Today, there is no treatment that can cure the disease or completely remove the symptoms.

- I'm convinced that ME will become more common after covid-19, but then maybe people will take the disease seriously and start doing more research, says Elias.

Elias can't bear to have long conversations, even when he's lying down.

- Sitting up is too heavy. Imagine you have a constant flu. It's physically possible for you to get out of bed and have a glass of water. But it's an incredible effort and after you get that water you're exhausted. That's how it feels to me. Always. [...]

Elias and his partner's future is not happening

Elias didn't know if he would be able to talk about Johanna during the interview. Because it's both new and hard that their future, which they planned for, won't happen. They've just started going to therapy together to figure out how to be in each other's lives.

- Not that we think we'll be able to find our way back to where we were before. But because we want each other well. We'll see what that relationship will entail, but it won't be what we thought it would be. It's very sad.

His voice cracks as he talks about how he and Johanna have always been that super couple with a relationship that many others have looked up to.

- But imagine having a partner who wakes up every day and basically can't do anything anymore. Doesn't have the energy to do things, doesn't have the energy to help out at home. Can't be the person he was before. This disease does so much to a person. You can't predict how it will affect the dynamics of a relationship. For us it has been very difficult.

"Can't blame myself"

Elias knows that Johanna struggles with a lot of guilt and that she finds it difficult. At the same time, Elias can't be her pillar of strength anymore. He can't take it.

- I can't blame myself for getting sick and I can't blame Johanna for how hard it is for her. People often cite the partner as the rock when someone has an illness. But that's not an expectation you can have of another person. Maybe we had needed to listen to other people who are going through this difficult thing.

Translated with www.DeepL.com/Translator (free version)
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Wasn't sure where to put this, but we have had a number of posts on the forum about what "recovery" means. Some Norwegian academic wrote about it today:

Hva betyr det å bli bra etter helseproblemer?
What does it mean to recover after being ill?

Opinion piece said:
The basic premise in the expression "to get well again" is that life after a health problem should be just as before. In many cases, however, the new condition is either better or worse than the old one.

...

Getting rid of a health problem must not always be understood as returning "again" to a previous state of health.

It will often be more appropriate to instead focus on moving on to a new state of health, without necessarily comparing with what was.
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That Norwegian academic should try talking to patients because of course it means back to pre-illness health, especially when medicine keeps insisting there is nothing wrong with us so how can that argument be made seriously? They don't even believe the things they say because all they do is argue in promotion of their conclusions, the words they use don't even matter.

This is the exact opposite of how science works. They are not following the evidence, they manufacture whatever they fancy, putting words into other people's mouths. Ridiculous. No one gets to arbitrarily decide for others like this, medicine is showing being especially inept at it and the implications of this are a serious problem.
 
The Norwegian ME Association has today officially asked the Norwegian Directorate of Health to update their national guidelines for CFS/ME.

Google translated quote:
We justify the need for a revision on the basis of three factors: 1) A significant change in the research environment which has laid the foundation for the health authorities in particular the USA and the UK to radically re-evaluate their diagnostic criteria and treatment advice; 2) the current supervisor is inconsistent in the use of diagnostic criteria and thus in the definition of relevant research; 3) the current supervisor is perceived as unclear in several areas.

https://www.me-foreningen.no/2021/05/26/norges-me-foreningen-ber-om-revidert-veileder/
 
Specialist in psychology, couple's counsellor and chronically ill Frøydis Lilledalen has an opinion piece in the Norwegian newspaper for medical news Dagens Medisin where she challenges some medical dogmas.

Våger vi å utfordre etablerte sannheter?
google translation: Do we dare to challenge established truths?

quote:
People with myalgic encephalopathy (ME) experience exacerbation of disease with activity outside the tolerable limit. For patients who do not reflect the general consensus on the undisputed health effect of the activity, there are two options. One can stop believing in the theses as the only conclusion, or one can stop believing in the patient. As a society and therapist, it is easy to choose the latter, and demanding to choose the former.
 
Kalliope said:
it is easy to choose the latter
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That's most of the problem, isn't it? It really is that easy to not only criminally neglect millions of sick people into amplified suffering, but to never even have to face it, to be able to dismiss all evidence of failure, millions of reports of harm and massive economic and moral consequences.

That's the part that's clearly broken. Not only shouldn't it be easy, it should be completely impossible. But it's basically considered completely normal that it's easy to do that, nothing anyone can do about it. It's just the way of life, handed down from the heavens and imposed on us, on a medical profession that wants to help but is forbidden to do anything about it. The way kings and emperors used to rule us all, their power divine and the simple natural order of society.

Except, no, this is entirely a choice, imposed by nothing and no one, an easy one, the past of least resistance is to ruin the lives of people whose health has been ruined by illness.

And frankly that's one of the most broken things ever. Not just the fact that it continues to happen, but that it really is easy to do it, there is no real opposition, barely anyone in the ranks of the profession is bothered by it, it's just so much easier to keep at it because only the victims object and the victims have been so fully dehumanized that it's a bland statement of fact that it is genuinely easy for the medical profession to simply not care at all, to the point of actively obstructing any help, which is especially easy when those doing the obstruction are the same who are technically legally obligated to help.
 
Hästar var landslagsryttarens liv – nu orkar hon bara minuter i stallet
https://www.mitti.se/nyheter/hastar...nuter-i-stallet/repudw!iefYibT0BbVhNQ@bc4Dww/

Google Translate, English
Auto-translate said:
Horses were the national team horseback rider's life - now she can only manage minutes in the stable

From national team horseback rider to chronically ill. Väsby resident Linnéa Beijar now hopes that covid research can also help those suffering from ME. "It would be fantastic if it can provide answers," she says.
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:thumbsup:
 
Paywalled article in a local Swedish newspaper:

”Jag satt och grät i duschen varje kväll”
https://kuriren.nu/bli-prenumerant/artikel/rx11e8vl

Auto-translate said:
"I was crying in the shower every night"

[...] ME is sometimes called "chronic fatigue syndrome". But Emma Sandberg thinks fatigue is an unfair description of the disease's consequences.

- I hate the word tired. Because I don't get tired. ME is something else. It makes my body shut down completely. I have problems with my breathing and my heart. It constantly holds me back from being the person I really am. [...]

- I'm glad I can still do a lot. But when it's at its worst, every cell in my body is vibrating and screaming for energy. I always have to be careful not to do more than my body can handle, but it's very difficult," [...]

- I sat and cried in the shower every night. I hated my body and didn't know why it was doing this to me. [...]

She wishes the health care system had taken her symptoms seriously when she first became ill and says many doctors interpreted her lack of energy and low mood as depression. And although she now has a diagnosis, the lack of understanding still remains.

- I often have to defend my diagnosis. Many doctors lack knowledge and respect for ME. They question whether I am really as ill as I say I am.

Several researchers have pointed out during the corona pandemic that 'post-covid' - the prolonged loss of energy that has afflicted some covid 19 patients - is very similar to ME. For Emma, there is no doubt. She is convinced that many people with post-covid have suffered from ME. And she sees something positive in that.

- I know it sounds awful, but if more people are affected by ME, it needs to be taken seriously. And more resources and research can lead to change.

https://kuriren.nu/bli-prenumerant/artikel/rx11e8vl
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A really important blog post on the SF-36 and the dangers of confusing functional ability with quality of life, written by a severely ill pwME.

En syn på livskvalitet som bäddar för barmhärtighetsmord
https://mitteremitage.wordpress.com...vskvalitet-som-baddar-for-barmhartighetsmord/

Google Translate, English
Auto-translate said:
A view on quality of life that is conducive to mercy killing

[...] Why is this something I feel is important to highlight and critique? Even to protest against?

Well, because when you argue in this way that quality of life is linked to ability to function, you ultimately enable others to look at how an illness limits everyday life and, from what they see, judge what quality of life they think the sick person have. With this definition, the assessment can in practice be made without even talking to an ill person about how they view their own life.

And what if someone suddenly thought it was more merciful to let people with a low "objective" quality of life die? Especially those who just cost a lot of money without being able to contribute themselves. Then this would be the perfect tool for them. With functioning and ability to perform translated into a measure of quality of life. This could be misused, for example, in situations where medical care has to be prioritised, such as in a pandemic, with the consequence that those whose quality of life is judged to be low do not have the same chance of receiving care as others. [..]

Questionnaires such as these perpetuate the notion that a life limited by illness or disability is automatically of lower quality than a life that is not. Unfortunately, it sets the stage for the idea that it is more merciful for us sick and disabled people to die than to be a burden on society. After all, we have no quality of life![..]

It is possible to be seriously ill with severe limitations and still have quality of life. But when studies are done on the difficult living conditions of the sick and the results are then presented in terms of low functioning = low quality of life, you make it sound as if it is impossible. You make it sound as if the only way to improve the quality of life of the sick is for them to regain their health, for their functional capacity to increase or for the limitations of their daily lives to decrease. Whereas the big and crucial question is actually how to increase the quality of life in the presence of severe illness and major limitations.

Translated with www.DeepL.com/Translator (free version)
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The Kavli Trust has an English version of their annual report from 2020. On page 45 they write about the research projects into ME they've supported with statements from professors Fluge and Mella.

Kavli Trust has supported their research with 28.5 million NOK since 2011.
That's 2 807 854 EUR, 3 421 943 USD, 2 413 495 GBP

Quote:
“We are very grateful that Kavli Trust wants to support research on ME/CFS. This research is in an exciting phase, and we believe that the next few years will bring increasing insight into the causes and development of the disease,” says Olav Mella.

https://cdn.innocode.digital/kavlifondet/uploads/2021/06/Kavli-Trust-Annual-Report-2020-2-1.pdf
 
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?
 
A much anticipated op-ed by some of the leading ME clinicians and researchers in Denmark has been published in the Politiken daily newspaper: https://politiken.dk/debat/kroniken...senfølger-af-covid-19?shareToken=44seCYAAfMHg

It's paywalled but the above 'gift link' (kindly shared by a fellow patient) allows access to anyone with a profile at Politiken, which is free to create. Obviously most relevant to Danish readers although I imagine Google Translate would do a decent job.

The authors are well known and highly regarded in the patient community -- Jesper Mehlsen, the go-to private practitioner for ME patients in Denmark, Rikke Olsen, a researcher on mitochondrial dysfunction, and Peter La Cour, a psychologist currently also at Mehlsen's clinic.

In brief summary, the piece lays out the links between Long Covid and ME, explaining the basic pathologies, and makes the case for increased research and funding in these and related conditions. It's very to the point and, I think cleverly, steers clear of a directly confrontational stance to the functional disorder paradigm and its proponents, while still lamenting the negligence of ME research and treatment in Denmark -- and making the case for increased interest in the field.

The authors touch on the highly problematic diagnostic practice, which encourages the use of non-specific 'functional' labels. 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, but also the (rather non-committal but still positive) intention by the Minister to increase funding for ME research.

It's great to see a piece like this in mainstream media. It complements very well the last few years' opinion pieces by patients and lays out the situation in much more solid, well-written terms than any journalists at national outlets have bothered with so far. I imagine it will be hard for people at the Health Authority as well the Ministry of Health to ignore. Hooray for allies like this!
 
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