News from Scandinavia

Now she can be at school half time and life is pretty normal.
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Being able to attend school only half time is, of course, not at all normal. I can think of many people with ME/CFS who were initially severely ill, and who improved over the first few years, either due to some healing and/or learning better how to manage their illness - all without any 'joy from horses'.
 
Forskning.no has a narrative review of sorts about what goes wrong in the body of pwME. Overall it's good, although I struggle to understand why the Mayo clinic is cited instead of say, the new NICE guidelines. This is going to be nice to have with the lightning process study approval meeting in just a few days and the usual nonsense from the people involved about pwME who don't want to be mentally ill popping up in the media.

It mentions how little biomedical research has actually been done, decodeME, the comeback study (not by name), various theories by different researchers in Norway including Fluge and Tronstad. There is a quote from Wyller, but his theories are not given much space.

Hva skjer i kroppen til de som har ME?
What happens in the body of those who have ME?

I really enjoyed the ending, encouraging more people to study ME:
Article said:
All the researchers forskning.no spoke to encourage more people to do research on ME.

- ME is then to that extent under-researched. It is a major societal problem, and it is completely irresponsible not to try to figure it out. Then the road will be created while we walk, says Tronstad.

- I would like more research on ME, says Viken.

- We must recognize ME as a disease that is worth investigating. The more we research, even on hypotheses that turn out not to be true, the closer we get to an answer to what is behind it.

Goll votes in:

- It is a good idea, both humanitarian and financial, to do more research on ME.
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A heartbreaking article about severe ME sufferer Aurora's fight with her municipality to get the help she and her doctors says she needs.

Dagsavisen: Mens hun venter på helsehjelp, ligger Aurora (24) i mørket
google translation: While she waits for health care, Aurora (24) lies in the dark

quote:
Aurora's mother and grandmother are worried about what will happen to her. They have devoted almost all their time to helping her, and are afraid that her pain will be chronic forever. But all the time they have spent writing applications for the district has not worked. Aurora is still in a health center in the dark.

- It's like banging your head against a bureaucratic wall. It is as if Aurora becomes totally invisible and all information about her is completely uninteresting. As a relative of a child who is seriously ill, it becomes impossible to have a good dialogue when we encounter such bureaucratic general answers, says mother Hanne.
 
Kalliope said:
A heartbreaking article about severe ME sufferer Aurora's fight with her municipality to get the help she and her doctors says she needs.

Dagsavisen: Mens hun venter på helsehjelp, ligger Aurora (24) i mørket
google translation: While she waits for health care, Aurora (24) lies in the dark

quote:
Aurora's mother and grandmother are worried about what will happen to her. They have devoted almost all their time to helping her, and are afraid that her pain will be chronic forever. But all the time they have spent writing applications for the district has not worked. Aurora is still in a health center in the dark.

- It's like banging your head against a bureaucratic wall. It is as if Aurora becomes totally invisible and all information about her is completely uninteresting. As a relative of a child who is seriously ill, it becomes impossible to have a good dialogue when we encounter such bureaucratic general answers, says mother Hanne.
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The newspaper Dagsavisen is following up this story.

The health political spokesperson for the socialist party (SV), Marian Hussein, has started to get engaged in ME and supports the patients. She has asked the Minister of Health and Care Services to answer how ME patients should be ensured a better health service, and will get a reply within a month. The Minister shared the article about Aurora yesterday on her Facebook page, so that might be a sign of something positive.

Quotes from today's article:

An ongoing research project under the auspices of the research foundations Sintef and Fafo, which was recently mentioned in Klassekampen , indicates that many of the health services ME patients receive today contribute to making them sicker.

- It shows that here we have a human view that is not worthy of our time. We must stop and say that this is not how people should meet. We need to find out how we can set up our health care system so that people get the health care they need. People should not get sick from meeting the health service, says parliamentary representative Marian Hussein (SV).

...

Hussein believes that ME patients are generally distrusted, and are expected to receive treatment that may have worsened their situation.

- The key must be that the patient group is treated as equals, and that we must see the people where they are, and not reject them on the basis of any thoughts that do not belong to our time. We have to take them seriously, we can not sit and watch in silence, she says.

She believes one of the main challenges today is an ME patient being met by a healthcare system that lacks sufficient knowledge.

Dagsavisen Mener ME-syke blir mistrodd: - Vi kan ikke sitte og se på i stillhet
google translation: Believes ME patients are distrusted: - We can't sit and watch this in silence

ETA: Hussein is a social worker with leave from the Norwegian Labour and Welfare Administration while she's in the Parliament.
 
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ME gets a tiny mention in this article on mental fatigue/brain fatigue ("hjärntrötthet") in the journal of the Swedish Medical Association today:

Hjärntrötthet – ett osynligt gissel
https://lakartidningen.se/klinik-oc...kt/2022/03/hjarntrotthet-ett-osynligt-gissel/
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Brain fatigue - an invisible scourge

[...] It is unclear how many people suffer from brain fatigue. During ongoing central nervous system disease, a large proportion are likely to experience brain fatigue. Prolonged brain fatigue after minor head injury has been estimated to occur in 20-25% of the 20 000 people who seek medical care in Sweden each year after head trauma [11]. The same relationship is seen after stroke and meningitis, treated brain tumours and endocrine diseases with brain involvement, as well as in stress-related conditions and myalgic encephalopathy [12]. [...]

Fact 2. Brain fatigue is common in
[...] * myalgic encephalopathy (ME) [...]

12. Gunnarsson LG, Julin P, Norén T. Inflammation, långvarig trötthet och värk – uppdatering av kunskapsläget. Läkartidningen. 2020;117:20008.
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mango said:
ME gets a tiny mention in this article on mental fatigue/brain fatigue ("hjärntrötthet") in the journal of the Swedish Medical Association today:

Hjärntrötthet – ett osynligt gissel
https://lakartidningen.se/klinik-oc...kt/2022/03/hjarntrotthet-ett-osynligt-gissel/
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Quelle surprise, Reimer has posted a comment... :rolleyes:
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[...] and the chronic fatigue syndrome the authors refer to as myalgic encephalopathy (formerly myalgic encephalomyelitis); "ME" where by definition there is no proven encephalopathy (or the diagnosis would have been something else). Poor district doctors who are expected to manage most of these patients.

Mats Reimer, Paediatrician, Mönlycke

Conflict of interest: Follower of the biopsychosocial approach to chronic fatigue syndrome.
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I found this on twitter, posted by AMMES (American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society). It's dated Jan. 28, 2022, so it's a few months old.

I did a search to see if it had been posted before but didn't find it. Please delete if this has already been posted or is not useful.
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The Journey Towards Becoming Diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Patients’ Experiences

Authors: Kristina Tellmar, Petra Christensson , Gabriella Bernhoff, Bo Christer Bertilson and Hanne Konradsen

https://www.ecronicon.com/ecne/pdf/ECNE-14-01012.pdf
Abstract

Background: Myalgic encephalomyelitis/chronic fatigue syndrome is a disease that negatively affects patients’ quality of life. Previous research has shown that these patients are commonly not taken seriously when seeking medical attention.

Aim: The aim was to examine the experiences of patients with ME/CFS regarding their interaction with Swedish primary healthcare professionals.

Method: The study used a qualitative and exploratory design, taking place in a specialist clinic in Sweden. Data consisted of interviews with 13 patients with ME/CFS, which were analysed using content analysis.

Findings: For patients, it was Feeling truly connected during the period before they received a diagnosis. Time is an important factor, and in the phase from initial symptoms to diagnosis, Knowledge is power.

Conclusion: Patients with ME/CFS were met with different levels of knowledge and interest from healthcare professionals. These challenges might be related to the relative unawareness and lack of knowledge of the disease and the underlying cultural scepticism still present.
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Andy said:
Copied from a Chronic Illness Inclusion Facebook post,

"My name is Hannah Lewin I am an MSc student studying Medical Anthropology at the University of Copenhagen. This September to December I will be conducting an ethnographic research project called ‘INVISIBLE ILLNESSES.’
The scope of the study is to dive deep into the ways in which people living with an Energy Limiting Chronic Illness (ELCI) manage their everyday lives according to their energy impairement, how they seek help and the struggles they face in having their “invisible disease” recognised and legitimised by medical, work places and social domains. I am hugely passionate about sharing the realities of what it is like to live with an energy limiting chronic condition, as well as understanding the type of care, both ‘biomedical’ and ‘alternative,’ that is available.
Through publishing this report I hope to capture the attention of general practitioners, policy makers and the public, so that they adapt/update their practices and perceptions of ELC in a way that is sensitised to the needs of those that live with an chronic energy illness.
I hope this post gives you a little insight into the project. If you would like to share your story, views or contacts of those potentially interested in being part the study please reach out to me (via email). I wish to understand all narratives and perspectives.
Hannah Lewin
Contact details:
University email address: gml379@alumni.ku.dk"

Original post
Code: 
https://www.facebook.com/ChronicInclude/posts/1480284525706883
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I asked Ms. Lewin about the study. Her focus will be on patients in the UK.

Here is her reply.

Thank you for reaching out and registering your interest in my study.

The research demographic will focus on patients with ME/ CFS in the UK, as the research aim is to understand the UK health care systems medical response to energy limiting chronic illnesses. However, I am interested in capturing as many perspectives as possible.

There is no time limit what so ever. I am eager to listen to the illness stories of those who have lived years knowing their condition, as well as those who are still in the dark.

The nature of the interviews will be in-depth and open-ended conversations, meaning that questions asked will be guided by each participant's unique responses. It will not be a questionnaire as such.

Please let me know if you would be happy to participate in the study. I would be happy to set up a pre- interview phone call sometime between July- August to give you an overview of the study expectations, as well as answer any questions you may have before committing to the study.

All the best, Hannah Lewin
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Two paywalled articles in the Swedish newspaper GP today:

Benjamin blir sjuk av att ta en promenad
Livsstil / Benjamin Glänte, 24, är ständigt trött och blir sjuk av en promenad. Efter en omgång körtelfeber för sex år sedan fick han kroniskt trötthetssyndrom, en omtvistad diagnos utan bot.
– Jag hade gett upp allt, mina företag och pengar, om jag bara fick slippa detta och börja om på nytt, säger Benjamin.

https://www.gp.se/livsstil/benjamin-blir-sjuk-av-att-ta-en-promenad-1.70474710
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Benjamin gets sick from taking a walk

Lifestyle / Benjamin Glänte, 24, is constantly tired and gets sick from a walk. After a bout of glandular fever six years ago, he developed chronic fatigue syndrome, a controversial diagnosis with no cure.
- I would have given up everything, my business and my money, if I could just get rid of this and start again," says Benjamin.
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Postcovid kan ge upprättelse till ME-sjuka
Livsstil / Patienter med kroniskt trötthetssyndrom, även kallat ME/CFS, har länge varit utlämnade till en oenig läkarkår och hemmasnickrade dieter för att råda bot på sina symptom. Med forskningen om postcovid får de en chans till upprättelse.
– Det tidigare kontroversiella med att få långvariga besvär efter virusinfektion är inte lika kontroversiellt längre, säger läkaren Per Julin.

https://www.gp.se/livsstil/postcovid-kan-ge-upprättelse-till-me-sjuka-1.70537527
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Postcovid can bring redress to ME sufferers

Lifestyle / Patients with chronic fatigue syndrome, also known as ME/CFS, have long been at the mercy of a disagreeing medical profession and home-grown diets to remedy their symptoms. With postcovid research, they have a chance for redress.
- The former controversy of getting long-term symptoms after a viral infection is not so controversial anymore, says doctor Per Julin.
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Paywalled article in a local Swedish newspaper today.

Björns långa vandring – efter kampen mot den svåra sjukdomen: "Ta det med ett brett leende"

Han har redan vunnit en stor match, från att vara totalt utslagen till att springa ett maraton.

Nu tar Björn Eklund nästa kamp – en promenad från Sundsvall till Stockholm.

– Det här gör jag för de 40 000 ME-sjuka i Sverige och det ska bli fantastiskt roligt. Jag ska ta stela leder, skavsår och vakna nätter med ett brett leende, säger han.

https://www.st.nu/2022-04-16/bjorns...n-svara-sjukdomen-ta-det-med-ett-brett-leende
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Björn's long walk - after battling the difficult disease: "Take it with a big smile"

He's already won a big game, from being totally knocked out to running a marathon.

Now Björn Eklund is taking on the next battle - a walk from Sundsvall to Stockholm.

- I'm doing this for the 40,000 ME sufferers in Sweden and it's going to be great fun. I'll take stiff joints, chafing and waking up nights with a broad smile, he says.
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(Sundsvall to Stockholm is approximately 400 kilometers, I think?)
 
ME on Swedish breakfast TV today:

TV4 Nyhetsmorgon: Niklas lever med svåra sjukdomen ME: ”Man får hela sitt liv kidnappat”
https://www.tv4.se/artikel/7DKJXCVM...-sjukdomen-me-man-far-hela-sitt-liv-kidnappat
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Niklas lives with ME: "You get your whole life kidnapped"

Struggling with the family jigsaw - Breaks down on set

Around one per cent of the Swedish population lives with the disease ME, which causes widespread pain, brain fog and extreme fatigue, among other things. Influencer and entrepreneur Vanja Wikström describes her partner Niklas Malmqvist's ME disease as having kidnapped his whole life.

Can barely stand up
The disease hits him hard in everyday life and some days it's so bad he can barely stand up. Keeping the family's life together depends entirely on his partner Vanja.

Watch the poignant interview in the player above.
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Osynliga symptomen vid ME-sjukdom: ”Kan vara en tortyr”
https://www.tv4.se/klipp/va/13762050/osynliga-symptomen-vid-me-sjukdom-kan-vara-en-tortyr
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Invisible symptoms of ME disease: 'Can be torture'

Around one percent of the Swedish population lives with the disease ME, which causes widespread pain, brain fog and extreme fatigue, among other things. Bo Bertilson is a research leader at an ME centre in Stockholm, start the player to hear him talk about the disease.
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(I haven't watched it so I can't comment on it. Comments on social media are very mixed: some are grateful for the attention and that it shows that ME affects the whole family, while some are very disappointed and sees it as a missed opportunity to get even the most basic facts and needs across.)
 
I have written a text in response to the interview with Bertilsson in TV4 and Juhlin in GP.

”Yesterday, Myalgic Encephalomyelitis (ME) attracted attention in both GP and TV4. Some of what came out were good things, but the day still ended with me screaming. For is totally incomprehensible to me that two doctors with experience in specialist care for ME chose to use expensive media space to tone down the disease, when they should instead have taken the opportunity to sharpen the tone.”

You can find a Google translate version via this link:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
 
Swedish author Fredrik Blomqvist will soon be talking about ME in an interview, in the local newspaper Mariefredsposten.
Auto-translate forfattarfredrik on Instagram said:
In the next issue of @mariefredsposten I will for the first time talk publicly about the terrible disease ME, which my amazing wife has been battling since 2008 ❤

Which we have been fighting.

When, as a kind of therapy and grief work, in the most difficult moments, I wrote a piece of work, I had no idea that it would become my fiction debut "Lust and Purgatory".

In the next issue of Mariefreds-Posten I will tell our story for the first time - about living with ME, about fighting for life, about being grateful. About being at the bottom and fighting your way back up.

And about writing.

To be continued, also here on Instagram ...

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Paywalled article in a Swedish local paper today:

"Jag får kämpa jättehårt för att klara av mammalivet" – Madelenes vardag raserades av ME
https://www.tidningenangermanland.s...-mammalivet--madelenes-vardag-raserades-av-me
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"I have to fight really hard to cope with motherhood" - Madelene's everyday life was destroyed by ME

Ten years ago, she was an active and independent horse girl who competed in dressage and had a rich social life. Today, Madelene Petersén has to rest almost every hour of the day and struggles to create a functioning everyday life despite her severely debilitating disease ME.

- I've decided not to be ashamed of my illness anymore," she says. [...]

On the surface, she may seem perfectly normal. But life over the past ten years has been anything but simple. For Madelene, it started with a respiratory infection, extreme fatigue and persistent feelings of sickness. [...]

For a few years now, she and her partner Dennis have been living in a house in Bollstabruk. Everyday life is limited around the home, where every little effort has to be weighed against another. But when she looks back on the past few years, it's not just the struggle with ME and POTS that has been a crisis to deal with. In 2017, she was disqualified from insurance after a period of sick leave, despite doctors assessing that she had not recovered. She has since bounced back and forth between the Public Employment Service and the Social Insurance Agency, which has also made her health worsen, she says.

- I've been treated so badly and downright disgustingly during this journey by both the health service and the Social Insurance Agency. They have made me feel that I had no value as a human being or the right to live a functional life,' she says.

In the midst of all this, there was also a dream of becoming a parent, which was not an easy decision.
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Sympathetic article about the importance of humility, written by a GP. Published in the journal of the Swedish Medical Association.

»Ödmjukhet kanske är en av de allra viktigaste egenskaperna hos en duktig läkare«
https://lakartidningen.se/aktuellt/...viktigaste-egenskaperna-hos-en-duktig-lakare/

Google Translate, English
Auto-translate said:
"Humility is perhaps one of the most important qualities of a good doctor"

We are currently working on solving the puzzle postcovid. What wasn't there a moment ago is becoming clearer. Who is affected? What are the symptoms? How can we help? In medical school, I was told something along the lines of "what we take as truth today is only what we have found out so far". As a reminder to be humble about the fact that there are certainly things we don't know everything about.

I meet Erik, who after a flu-like episode several years ago developed chronic fatigue syndrome. He is not much older than I am. He used to be fit and work full time. Since the days of fever five years ago, he now lives a very different life. The work capacity assessment shows that he has no work capacity at all. His muscle strength is poor, and the last time I felt such a weak hand grip was during my tour in a stroke ward. Erik can't cook because the brain fatigue makes it impossible to follow the recipe. And it doesn't matter anyway, because he can't stand up as long as it takes to prepare the food anyway. [...}

It takes humility not only to the scientific facts I lack, but also to what I don't know about the man in front of me. I get one small piece of the puzzle when we meet, perhaps more pieces if we meet continuously. The anamnesis I have been entrusted with may be exhaustive, but may nevertheless have left out important facts. I am piecing together an image with the help of my past experience. But I don't know everything. Perhaps I need to reconsider my decision. Do it again. Sometimes apologize.
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