News from Scandinavia

mango said:
A reply to the reply, by Maroti et al:

Meningsfullt skilja på »funktionell« och »strukturell« smärta
https://archive.ph/wip/TgVOZ
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Somebody asked me to add this quote as well:
Maroti et al auto-translate said:
Those of us working with the diagnosis of functional disorders also benefit from so-called "positive signs", i.e. status findings that indicate an intact structure but disturbed function/signal transmission. Hoover's test is one such example that could be used to assess whether hemiplegia is functional. With this definition of the term "functional" we also mean that the physical symptoms are very much influenced by psychological factors and are potentially reversible.
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Sean said:
Many elderly people were administered morphine instead of oxygen despite available supplies, effectively ending their lives.

o_O
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Basically the Swedish strategy in a nutshell:
F0yDUcRWIAc428T
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And the number of public health officers and other officials who have said that they'd also follow that strategy in the future says a lot about where public health is heading. Just like in evidence-based medicine, they pursued a race to the bottom and the bottom has won.
 
An article in the news today about an often used treatment for shoulder issues (calcium deposits specifically) that it turns out might not be very helpful.

I specifically noted that at six months there were no difference between treatment and control groups (two types of sham treatment). Sounds familiar?

Popular treatment for shoulder pain turns out not to work

Edit: Thread on the study here:
Ultrasound guided lavage with corticosteroid injection versus sham lavage for calcific tendinopathy of shoulder: RCT, 2023, Moosmayer et al
 
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Midnattsol said:
The husband of a pwME in Norway has written an opinion piece on how their life became different than expected due to illness:

Livet sammen ble ikke som vi trodde
Life together did not turn out as we thought

"Serious illness in close relationships can end in people becoming even closer, but illness can also end in broken relationships. I am grateful that Linn Therece's way of dealing with the disease has brought us even closer if possible. We stand together, but it has required me to also acknowledge my own shortcoming. I mustn't forget what it's really about. For her, it's about everyday life where she gets the opportunity to have the best possible life and hopefully get well again. I have faith and so does she. And we are both prepared for the fact that the road ahead will not be as we think and hope either."

Note for people not Norwegian, the author is high up in the military in Norway, and the couple has had some media coverage recently for potential tax evasions. No idea if it is relevant for this opinion piece, but her illness has come up during the media coverage as living conditions etc. have been important. I want to be clear they have not been found guilty of anything, but I can see a need to explain a bit more about why they live as they do.
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Follow up to this, it has been revealed that the wife has been institutionalised and spent time in rehabilitation and treatment travels and apparently she applied to an exception to avoid to pay a tax when selling her home (the rule is that you have to pay tax unless you have lived in the house/apartment/etc for the majority of the last two years). The exception she applied for is called a "brukshindring" which translates to "something that makes you unable to use". An example of this could be needing to be institutionalised or suddenly needing a wheelchair when the home cannot accomodate it.

I wonder if this can set a precedence for other pwME if it the application was accepted, that would also mean that the tax office sees ME as a debilitating illness. At least they would seem abmle to look at the symptoms not just see the diagnosis and go "not serious enough".

The defense chief's wife with new information in the housing case
 
Video recordings from the ME conference in Stockholm 11 October, hosted by RME, have now been published on YouTube:

https://www.youtube.com/@rmesverige1475/videos

RME said:
  • Understanding infectious origin of ME/CFS
    PhD, Dr Bhupesh K. Prusty
  • SARS-CoV-2 induces differential reactivation of latent viruses in ME/CFS
    PhD, Dr Eirini Apostolou
  • Persistent infection and viral reactivation: a driver of common ME/CFS and Long Covid symptoms
    Dr Amy Proal
  • An ethics-based approach to management of ME/CFS and Long Covid
    Professor Diane O’Leary
  • Children with ME taken into custody
    Dr Nigel Speight
  • Patient experiences with public services and interventions in Norway
    PhD Anne Kielland
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This conference was arranged in collaboration with organisations from Norway, Denmark and Finland (doesn't say what orgs).

You can order "material from the conference" here (doesn't say what kind of material):
https://rme.nu/forskning/konferenser/
 
(Not ME)

There was a really good article about a pwPOTS in a Swedish local paper last week.

Umeåstudenten Emilia drabbades av mystisk sjukdom – svimmade fem gånger om dagen
https://www.folkbladet.nu/2023-10-2...sk-sjukdom-svimmade-fem-ganger-om-dagen-6f193
Auto-translate said:
Umeå student Emilia suffers a mysterious illness - fainted five times a day

[...] The first year and a half were the hardest so far. There were periods when she fainted at least five times a day.

- 'If I went for a walk, I had to go lie down in a stairwell after five minutes because I had misjudged my energy that day. It was a very tough time.

She has fainted at lectures and at the cinema.

- You feel ashamed, it's embarrassing. At first, I avoided situations where there were lots of people. It's scary to move around in public when you feel your symptoms are very strong," she says.

Do you have any memories where it was particularly dangerous when you fainted?

- On one occasion, when the doctors had told me that there was nothing wrong, I got into a car and when I was driving I felt like I was about to faint. It was horrible, I thought I was going to die. I managed to stop and sorted out the situation," says Emilia[...]
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Virusläkaren experimenterar på svårt sjuka: ”Han måste stoppas”
https://www.etc.se/inrikes/viruslaekaren-experimenterar-paa-svaart-sjuka-han-maaste-stoppas

Google Translate, English.
Auto-translate said:
Virus doctor experimenting on the seriously ill: "He must be stopped"

Severely ill people seeking treatment from the virus doctor feel like guinea pigs in unauthorised experiments. They are prescribed a large amount of strong medication - and encouraged to drink eye drops.

Several patients now report nerve damage and life-threatening doses. Nevertheless, new patients pay high prices to be treated at the doctor's clinic in Stockholm.

The virus doctor himself calls himself 'the best in Scandinavia' - but is strongly criticised by colleagues.

- Hair loss, nerve damage and a removed uterus

- 'Seems like an exploitation of people who are desperate'

- Video: The virus doctor is confronted by Dagens ETC.
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auto-translate said:
Patients are treated with a cocktail of drugs, many of which are commonly used to treat patients with severely compromised immune systems or HIV/AIDS. The doctor also regularly prescribes the alcohol cessation drug Antabus, diabetes medication, Alvesco, shark liver oil, nitroglycerin spray, the eye drops Lomudal (to be mixed with water and swallowed), walnut bark and Desmospressin - a drug commonly prescribed for bedwetting in children.

In total, the review by Dagens ETC shows that doctors regularly prescribe around 50 medicines. Patients are often ordered to take about ten of them after a first visit to the clinic. There is no scientific evidence that the drugs actually work on any of the diseases the virus doctor claims to treat.

Most popular with patients is the antiviral drug Valganciclovir, normally used to prevent or treat infections in patients with compromised immune systems.

- He prescribes it much like a vitamin supplement, claiming that it is not toxic, which it can be. He must be stopped," says an experienced researcher and medical colleague.

The researcher wishes to remain anonymous - "it is sensitive to criticise colleagues" - but is far from alone in criticising what is going on at the virus doctor's clinic.
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auto-translate said:
A ray of hope in dark rooms

Many of the clinic's patients are diagnosed with ME, myalgic encephalomyelitis, sometimes called chronic fatigue syndrome. It is a disease that often, but not always, occurs after infections and is characterised by fatigue that does not go away. Patients often have severe pain and are sensitive to stimuli. Sometimes the sufferer needs tube feeding and a catheter.

It often takes a long time to get a diagnosis of ME - and even longer to get treatment to alleviate it. With the virus doctor, it goes all the faster. He believes that fatigue syndrome, like the other diseases he treats, is caused by a chronic viral infection combined with a weak immune system.

He therefore repeatedly prescribes the antiviral drug Valganciclovir, even though there is no evidence that the drug can treat ME. The red pills have a particularly long list of side effects. Common side effects include fungus in the mouth, abnormal liver and kidney values, depression, hair loss and vision problems. Even more serious side effects, such as deafness and male infertility, affect up to 1 in 100. The drug increases the risk of cancer if used for a long time.

Yet a woman with ME tells Dagens ETC how, convinced of the pills' alleged effectiveness, she turned to her doctor's clinic. After her blood samples were analysed, she was told that it was appropriate to start with a high dose, even though she has a form of haemophilia.

- Afterwards I contacted my coagulation centre to double check that I could take such high doses and they immediately said "no, you absolutely cannot do that, you could die".
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auto-translate said:
In the three years that the doctor has been treating patients, alarming reports and tips have been received by the Health and Social Care Inspectorate (Ivo). Patients say that the treatment has made them worse. Several say that they were promised care, but that they were instead subjected to medical experiments.

- 'My partner was a guinea pig, pure and simple. They tested different medications on him. We thought that it's kind of worth it, because if you get well, you get your life back. But my partner didn't feel any difference or improvement. Instead, he got a psychosis from the side effects of Antabus," a patient's relative told Dagens ETC.

She says that her partner is too ill to be able to talk.
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In Ivo's documents, a patient describes how she had great confidence in the virus doctor. On his advice, she had her uterus removed - with no improvement. The woman also claims that she has permanent nerve damage in her feet as a consequence of the medication.

Another patient describes the culture around the clinic as a cult where patients support each other through severe side effects, which are seen as proof that the doctor's treatment is working.

- 'I've been in trouble at the clinic. But there is no other care for us. We ME sufferers are desperate and rotting away in our homes," says another former patient when Dagens ETC calls.
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Not the first scandal

There is more evidence that the doctor is in fact conducting research on his patients. The clinic's website boasts of having employed a senior researcher linked to an affiliated research company with the same owner - a company that also lacks a research licence. The clinic also has an active biobank without a valid licence.

Three years ago, the doctor stormed out of a TV interview after the reporter pointed out that the doctor was conducting post-covid research without authorisation. Now the company has changed the name and location of the clinic without updating either the Ethical Review Authority or Ivo on the changed circumstances.

The doctor's lack of authorisation has not prevented him from receiving research grants. Last year he was awarded SEK 5 million by the Kamprad Family Foundation to conduct research - this time on ME sufferers.
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Auto-translate said:
Petter Brodin, an immunologist at Karolinska Institutet, has openly criticised the virus doctor's approach. He is familiar with the doctor's theory on "paraviral" diseases, which literally means "next to viruses". He believes that the theory "is not really crazy", but is against doctors prescribing drugs without research proving that they are beneficial.

- "If you want to do this scientifically, you have to do randomised studies with results reporting, follow-up and evaluation. In addition to possibly breaking laws and regulations, he may have missed a scientific opportunity to actually learn something. This would have benefited all patients around the world - not just those who come to his clinic.
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Auto-translate said:
Later, the doctor calls back. He says that the treatment at the clinic is not experimental, that no patients have suffered any permanent damage, that all patients receive their medical records and that he does not prescribe off-label medication at all. He does not treat ME, despite the fact that he markets himself to the patient group.

- "I don't think ME exists. But because we in Sweden have fixated on ME, we can't get round it. It takes a whole career to understand this. In my field, I'm a leader in Scandinavia. 80 per cent of my patients get better and no one gets permanently worse. I have been at the forefront and do my job. I do it "by the book".

- Generally, we select patients after an extensive questionnaire, blood tests and an interview. Then I use the overall picture to make a clinical judgement and propose a treatment for the patient. It is completely voluntary and you are free to get a second or third opinion.
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ETC Instagram post about the article here, and Facebook post here, for those of you who want to read the comments.

(Edited to add more auto-translated quotes.)
 
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Thank you for the information and the background story @mango
What a mess :(

I'm so sorry Swedish patients lost their care at Stora Sköndalen which seemed serious and evidence based and a good start for a development of ME health care. At least that was my impression.

And now it's just chaos, it seems. Do you think this is connected to the closing down of other private clinics with an offer for ME patients? There seems to have been no quality control of these offers? And now someone are trying to put together something from the scratch to offer ME patients within the public health care, just a few years after they closed Store Sköndalen. Maddening!
 
Finally some promising news from Denmark!
The Minister of Health, Sophie Løhde says it's clear that ME patients feel they are not met in a good way in the health care system, and she is now funding a review of the latest international research into ME in order to see if the patients group can be helped in a better way.


TVsyd Nu er der et lys i Marie Louises mørke tilværelse
For some reason the link didn't go through automatic translation into English..
 
Kalliope said:
Finally some promising news from Denmark!
The Minister of Health, Sophie Løhde says it's clear that ME patients feel they are not met in a good way in the health care system, and she is now funding a review of the latest international research into ME in order to see if the patients group can be helped in a better way.


TVsyd Nu er der et lys i Marie Louises mørke tilværelse
For some reason the link didn't go through automatic translation into English..
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I hope your ME Associations will get a say in all this. It's easy for bad researchers to distort this process if given an opportunity.
 
mango said:
There has been a fair bit of drama in certain parts of the Swedish ME community recently. More is expected today, so here's a bit of background information on the current situation.
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Thank you @mango for all the background information!:) Even though I am part of the Swedish ME Community I have been out of the loop for a while. Appreciate this update a lot!

mango said:
Uppdrag Granskning, a Swedish television program focusing on investigative journalism, is reportedly currently working on an upcoming episode featuring Axelsson and his clinic.
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Oh, that is interesting news!

mango said:
I've never been a patient of Axelsson's, so I'm not a member of the private Facebook groups where most of this drama has been playing out. I'm also not a member of the so called "patient organisation" (because their intentions and objectives don't align at all with my personal values and needs as a pwME) that is currently loudly and aggressively condemning the investigations of Axelsson.
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Is the patient organisation condemning the IVO investigations? That is odd! Where do they do that? I am not a member anymore either, for the same reasons.

mango said:
Uppdrag Granskning recently did an interview with the chairperson of the organisation about their social media posts on the investigations, according to a blog post by the chairperson. In the blog post they describe the questions they were asked by Uppdrag Granskning, based on which we learn that the people who made the complaints of iatrogenic harm to the IVO are feeling unfairly accused by the chairperson's posts and behaviour. We also learn that the chairperson has asked their members to report to them if a journalist tries to contact them ("Do you not support freedom of the press?").
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Where can one read this blog post?

mango said:
A few personal comments. I'm not sure if maybe it's a Swedish thing, but from my personal perspective it seems that there's this kind of toxic "hero narrative" that is at the core of this drama? No one should be silenced or attacked for reporting iatrogentic harms. The Swedish ME community has an ugly habit and history of attacking anyone who says anything that can be perceived as negative about those who are viewed by the group as "heroes and saviours" (certain doctors, certain researchers, certain patient organisations and representatives, and so on). As if these people are infallible and cannot do anything wrong. And when they inevitably end up saying or doing something unhelpful or bad, everybody is expected to stick their head in the sand and pretend not to notice. Personally, I hate it. I feel it's incredibly important that we keep using our critical thinking, examine closely and carefully evaluate information also when it comes to our so called "allies", not just our enemies.
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I wholeheartedly agree that this hero/savior narrative is prevalent and toxic, and I would say rather narcissistic at its core. What is most disheartening is that it seems to have taken over within the patient organisation.
It is very sad indeed:(
 
Kalliope said:
Thank you for the information and the background story @mango
What a mess :(

I'm so sorry Swedish patients lost their care at Stora Sköndalen which seemed serious and evidence based and a good start for a development of ME health care. At least that was my impression.

And now it's just chaos, it seems. Do you think this is connected to the closing down of other private clinics with an offer for ME patients? There seems to have been no quality control of these offers? And now someone are trying to put together something from the scratch to offer ME patients within the public health care, just a few years after they closed Store Sköndalen. Maddening!
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Thank you, yes Stora Sköndal was a big loss for the whole Swedish ME community :(

I honestly have no idea if this is connected to the closing down of other private clinics. I don't know what's happening behind the scenes, I haven't even heard any rumours. As usual nowadays the patient organisation RME doesn't share any information openly about their work, so I don't know if they have been or are involved in any way at all.

Absolutely maddening, yes :grumpy:

There's a news article from the Gothenburg area earlier this week, that says similar things are happening on the west coast now too. (However, in the case of Smärthjälpen, a privat clinic in Mölndal, I think it might be a good thing since they have a BPS approach.)

ME-sjuka Marita i Hindås oroas av förändringar inom vården
https://www.harrydaposten.se/nyhete...m-varden.68c9d896-a62b-442f-a5bc-a0622ff88185

It's a good article, worth a read. :thumbsup:
Google Translate, English
Auto-translate said:
ME sufferer Marita in Hindås worries about changes in healthcare services

Region Stockholm wants to manage ME care under its own auspices. A similar proposal is now on the table in Region Västra Götaland. This worries Marita Ekberg in Hindås, who has received help through private specialist care. [...]

- Living with ME is terrible. It is extremely difficult to deal with having your life taken away from you and the involuntary isolation. To then have to fight for care and be distrusted and denied help or be wrongly treated with, for example, gradually increased activity leads to deterioration for us, in the worst case permanently.

She is involved in several ME groups on social media and describes how many people feel the situation is hopeless.

- "They should wait to close down clinics until they have set up functioning care. Many suffer in silence. No more lives should be lost due to lack of care for ME sufferers.

- "Many people suffer in silence. There is great ignorance about ME," she says.
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- It has nothing to do with costs. It is a time-limited contract that expires. When it expires, you either make a new procurement, which you don't know who will win. Or you do it yourself," says Magnus Kronvall, head of specialised care in Region Västra Götaland.

A decision on the matter will be made on 8 November by the operational health care board.

- The proposal now is that the care assignment that Smärthjälpen has today is transferred to Sahlgrenska [University Hospital]. They have not had the targeted assignment before, which the intention is now to give them. The money that previously went to the clinic will now go to Sahlgrenska.

Is the expertise currently available at Sahlgrenska?

- "This is not an easy area of care; what distinguishes this group, or diagnosis, is that we don't know what the actual cause of the problem is. It is very much a diagnosis of exclusion. You have to rule out all other causes of the patient's problem. And there is no targeted treatment, the treatment is there to help the patient live with their symptoms.

What about patients who are worried about being left without treatment?

- "It is not the intention that they should fall between the cracks or be left to fend for themselves. But these patients don't spend much time at the specialist clinics, they are assessed and advised, then they have to go back to primary care. In that case, a plan has been drawn up to ensure that "this is what we can focus on, so that you can live with your condition". There is expertise for further help within primary care.

The feeling among the patient group seems to be that this is not the case?

- 'It is very important to give these patients the help that is possible to give. But science does not yet have an answer to what is the best treatment for this group. So it may be even more important that this is done in-house to be able to research these patients, in order to provide them with better help in the future.
Wants more specialist clinics to be opened

Marita Ekberg believes that one problem in the contact with the healthcare system is that there is generally great ignorance about the disease ME.

- "Primary care generally has very little knowledge about ME, which is why we don't get adequate care. We are denied symptom-relieving medication due to a lack of evidence. There is also a concern that we do not receive the medicines that we have received from the private clinics.
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