News from Scandinavia

Ravn · Nov 3, 2023

Some (potentially) good news from Denmark (google translated)

B.T. (27/10/23) Parents of a seriously ill daughter rejoice: Now the minister will finally look at the controversial disease

In 2019, when Esben and Vibeke Gustavussen last celebrated, a unanimous Danish Parliament passed the proposal V82.
A proposal that would improve the conditions for the country's ME/CFS patients by, among other things, separating the disease from the collective term 'functional disorders', so that the patients could receive a different treatment.
But the parliamentary resolution ran into the sand. Nothing happened, while their daughter, and the country's many other ME/CFS patients, only got worse, the parents say.
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The Minister of Health is actively involved in the matter
There is thus hope again on Friday. The Ministry of Health informs B.T. on Friday that they will now spend DKK 1.5 million to learn more about international research in the area.
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the Ministry of Health stated in the written response to B.T. that the knowledge review of the current evidence in the ME/CFS area will be carried out by an external supplier, who has not yet been appointed, however.
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https://www.bt.dk/samfund/foraeldre...tter-jubler-nu-vil-minister-endelig-kigge-paa

B.T. (2/11/23) Millions on the way to controversial disease: 'It's a big breakthrough, but we can't relax yet'

However, you can't relax yet, says Peder Hvelplund [health spokesperson for the party Enhedslisten]:
"Now we have to maintain the pressure so that we get the big breakthrough. Those who have been in despair have been given hope that improvements will come. We have to push for that so that they get it.'
This will be done, among other things, in the coming time, when Hvelplund has called the Minister of Health, Sophie Løhde, into consultation on the ME/CFS case. A consultation that has so far been postponed, but is expected to develop during November.
"What is crucial for us is that the review of the international research is not anchored by the Danish Health Authority and the Center for Functional Disorders, where the efforts have been until now. It is absolutely crucial that it be impartial experts,' he says
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https://www.bt.dk/samfund/millionbe...-sygdom-det-er-et-stort-gennembrud-men-vi-kan

Hutan · Nov 3, 2023

Oh, that does sound hopeful. My fingers are crossed that it works out ok.

mango · Nov 10, 2023

ME-sjuka: Vårdapparaten tar inte oss på allvar
https://www.etc.se/inrikes/me-sjuka-vaardapparaten-tar-inte-oss-paa-allvar

Auto-translate said:

ME sufferers: the healthcare system does not take us seriously

Lisa Hölne, 41, (left) and Lohla-Marie De Bie, 57, contacted Dagens ETC after the review of the virus doctor. Now they tell us about their illness and how they were treated.

Two weeks ago, Dagens ETC published a review of a controversial virus doctor. The article was met with a storm of criticism from patients and their families.

Dagens ETC's review showed that a virus doctor in Stockholm was experimenting on the seriously ill. But even before publication, the article was criticized by the affected patient group. Many wanted to say that ME patients do not get help anywhere else but from their doctor. Some argued that the article put a whole group of patients at risk.

Common to all critics is the view that primary care does not help the patient group. That it is primary care, not the virus doctor, that deserves to be investigated.

The patients who contact us say that they are constantly questioned at their health centers. That they are denied treatments that have been effective because of a lack of evidence. Many point to the tragedy in Bjärred in 2018, when an entire family was found dead after both daughters, aged 11 and 14, were diagnosed with ME. The parents' farewell letter said: "None of us will ever live a life with real meaning."

What is it that makes people turn to unproven, unscientific methods? Dagens ETC spoke to two women with ME who testify to a dysfunctional healthcare system.

- "I will take my life and have prepared for it," says Lohla-Marie De Bie. [...]
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Here's a ink to Dagens ETC's Facebook post.

mango · Nov 10, 2023

Opinion piece by a doctor at Bragée ME Center.

”Våra patienter förtvivlar när regionen överger dem”
https://www.dn.se/debatt/vara-patienter-fortvivlar-nar-regionen-overger-dem/

Google Translate, English

Auto-translate said:

"Our patients despair when the region abandons them"

Mistrust of functional diseases like ME is high even among doctors. This is reflected in Region Stockholm's decision to close the last specialist clinic, as well as the questioning of the plan for a knowledge center for post-covid. It is deeply unfortunate, as the suffering of the many patients is very real, writes specialist doctor Sven Britton.

Up to 10 percent of people seeking medical care suffer from functional diseases, which many people call imaginary. In today's vulgar vocabulary, it is more accurately described as funkophobia. These diseases and patients are now under attack from the third estate, political health care managers in the regions and the Social Insurance Agency.

The common mantra is that these diseases (such as ME, chronic fatigue, fibromyalgia and burnout) do not require any medical treatment or research to find one. On the contrary, this could exacerbate the conditions and lock patients into the hope of a cure. There is no such thing and the symptoms are created in the patient's mind.

This view is behind the new regional majority's decision in spring 2023 to close the last remaining specialist clinic in Stockholm without any preparation. In the future, patients will primarily be referred to the medical center. "Those of us who have worked at the specialist clinics and believe we have been able to help patients in many ways, not least with the mistrust they otherwise encounter, have not been assigned to a medical center. [...]
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mango · Nov 10, 2023

mango said: ↑

Opinion piece by a doctor at Bragée ME Center.

”Våra patienter förtvivlar när regionen överger dem”
https://www.dn.se/debatt/vara-patienter-fortvivlar-nar-regionen-overger-dem/

Google Translate, English
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I forgot to add that Sven Britton, who wrote the opinion piece, is on the scientific advisory board for RME (the Swedish ME Association).

https://rme.nu/forbundet/rmes-verksamhet/rmes-vetenskapliga-rad/

Andy · Nov 10, 2023

"Mistrust of functional diseases like ME"

Functional? In the sense of FND or does the original word mean something different?

mango · Nov 10, 2023

Andy said: ↑

"Mistrust of functional diseases like ME"

Functional? In the sense of FND or does the original word mean something different?
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Yes, functional as in FND

Kalliope · Nov 11, 2023

@MittEremltage has written a good critique of Dr. Britton's strange opinion piece.

Förvirrande och skadligt om ME i DN

google translation: Confusing and harmful about ME in DN

quote:

It is super important to highlight the consequences of the fact that care for ME is so undersized that it barely exists and that doctors and researchers take the patients' side in this. But the fact that a doctor at the country's now only regional specialist clinic dedicated to ME - and also a member of the patient association's scientific council - categorizes the disease as functional is frightening.

Texts like Britton's unfortunately risk leaving open the door for those who call ME functional and believe that it is just a bunch of faulty thought patterns that can be changed with cbt and gradually increased activity.

mango · Nov 14, 2023

Editorial in a local paper:

Tiotusentals svenskar drabbas av osynlig epidemi
https://sn.se/ledare/artikel/tiotusentals-svenskar-drabbas-av-osynlig-epidemi/lyggn3vl

Auto-translate said:

Tens of thousands of Swedes affected by invisible epidemic

[image caption]A national knowledge centre for ME/CFS and other post-infectious diseases is needed, focusing on research and treatment guidelines. This is something for Minister for Health Acko Ankarberg Johansson (KD) to highlight.

Many people in southern Sweden are affected by chronic fatigue, which causes a lot of suffering.

This is an editorial. SN's editorial page shares the values of the Centre Party.

Swedish healthcare is facing a growing challenge with ME/CFS, a chronic fatigue syndrome with no known cure that affects more and more people. Imagine being invited to dinner with some friends. This means not only a few hours of pleasant company, but also careful planning of rest before and several days of recovery afterwards. Each activity must be weighed against the inevitable exhaustion that follows. For the tens of thousands of Swedes living with ME/CFS, this is not just a hypothetical situation but a daily reality.

ME/CFS is a chronic disease where the patient's energy drastically decreases after minimal effort, both physically and mentally. More than 40,000 people in Sweden are estimated to be living with the disease, yet there is a striking lack of research and knowledge in healthcare. There is currently no evidence-based treatment for ME/CFS, which results in doctors mainly offering symptom-relieving measures.

The systematic lack of research also extends to the diagnostic process, which often involves ruling out other diseases rather than confirming specific criteria for ME. This results in a heterogeneous patient group, where treatment methods that work for one individual are not necessarily effective for another. This disagreement undermines trust in the healthcare system and makes it more difficult to get adequate help.

One of the most tangible consequences for the individual is the challenge of obtaining sick leave. Even if a patient receives a doctor's certificate confirming that they have zero per cent work capacity, the Social Insurance Agency can make their own assessments where they go against the doctor and deny the patient sickness benefit. This practice can have devastating effects for those who are already struggling with an illness that drains their energy and thereby affects their ability to defend themselves in the bureaucratic jungle.

The Moderates in Region Sörmland put forward a proposal for 2022, noting that "research suggests that ME may be one of the world's most debilitating diseases" and that many sufferers are expected to live in Sörmland. They proposed an investigation into the establishment of an ME team that could offer both clinics and home visits for those who are unable to access healthcare. This is a welcome initiative. Unfortunately, it has not yet been implemented, even though the Moderates are currently in the leadership of Region Sörmland.

In the wake of the pandemic, we have seen an increase in post-infectious conditions such as post-covid, whose symptoms are similar to those of ME. This underlines the need to prioritise knowledge enhancement and coordination in these areas. There is an urgent need to establish a national knowledge centre for ME/CFS and other post-infectious diseases, dedicated to research and the development of treatment guidelines. For thousands of sufferers, this is a fight for a better quality of life, and for some, a matter of life or death. We cannot, and should not, wait for more lives to be destroyed before we act.
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mango · Nov 20, 2023

In one of Finland's biggest newspapers/news websites:

Edellisenä päivänä Nikoa, 32, huimasi työpaikalla – Seuraava olikin viimeinen: ”99,9 prosenttisesti vuodepotilaaksi”
https://www.iltalehti.fi/kotimaa/a/ed8757bf-b8c6-4a43-a17a-8055bfd33f9a

Google Translate, English

mango · Nov 28, 2023

Postcovidmottagning i Huddinge ska utreda fler sjukdomar
https://lakartidningen.se/aktuellt/...tagning-i-huddinge-ska-utreda-fler-sjukdomar/

Auto-translate said:

Postcovid clinic in Huddinge to investigate more diseases

The post-covid clinic at Karolinska University Hospital will have a broader remit and will deal with more post-infectious diseases. The service will start on 15 December at Karolinska in Huddinge and will, among other things, investigate patients with suspected ME/CFS.

The Health and Medical Services Board in Region Stockholm has approved a new mandate for Karolinska University Hospital to take a comprehensive approach to post-infectious diseases.

In February this year, the board decided to discontinue the choice of care and additional assignments that affected patients with ME/CFS.

The Director of Health and Medical Services was then instructed to investigate how the care of these patients should be handled instead.

It is now clear that the post-covid clinic, which started a few years ago in Solna and then moved to Huddinge - and includes 5000 outpatient visits a year - will have an expanded activity as the clinic is now included in the new assignment to investigate several post-infectious diseases.

Eva Bring, head of department for specialised care in Region Stockholm, sees a need to broaden the knowledge base for post-infectious diseases, she writes in an email to Läkartidningen.

"The administration's assessment is that the patient group in the field of post-infectious disease is heterogeneous and we see a need to broaden the knowledge base to understand causes, symptoms and appropriate treatment. Therefore, we are pleased that Karolinska University Hospital will take care of the patient groups as the organisation will have a multidisciplinary care with increased opportunities to conduct research in the field."

The organisation's mission is to diagnose these diseases and provide consultation to primary care. Once the patient has been diagnosed at Karolinska in Huddinge, primary care has the main responsibility.

Why post-covid, ME/CFS and other post-infectious diseases should be investigated at the same clinic is because there are points of contact between them. It is also stated that the combined mission is expected to create better opportunities for research and knowledge development.

Eva Bring explains:

"There are synergies in gathering expertise in the entire field in one place with a close connection to academia. This applies not only to medical treatment but also to the treatment and care of the patient group. Furthermore, there are additional links between the specific patient groups post-covid and ME/CFS, as there are signals that patients with the initial diagnosis of post-covid have been diagnosed with ME/CFS at a later stage."

The clinic's mission means that there is the possibility of advanced examinations and treatments in the investigation phase, which can be read in a service statement to the health and medical care committee.
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Solstice · Nov 28, 2023

Seems to be a lot of this going on, doesn't there? Introduction of post-infectious or infection-associated diseases and bringing in different specialties to research it.

mango · Dec 1, 2023

The European Patients’ Academy on Therapeutic Innovation (EUPATI) is offering several free online courses
https://learning.eupati.eu/local/coursecatalogue/

One of them is available in Swedish:

Gå vår utbildning och lär dig mer om läkemedel och medicinteknik
https://se.eupati.eu/utbildning/

I think this is the same course in English?

Introduction to Medicines R&D
In this introductory module, you will acquire the basic skills and knowledge about medicines research and discovery process and find different ways about how patients can be involved.
https://learning.eupati.eu/local/coursecatalogue/index.php?categoryid=1

mango · Dec 1, 2023

Upcoming Finnish webinar January 24 2024 on long covid, ME/CFS and hypermobility. Organised by Suomen Psykofyysisen Fysioterapian Yhdistys. Via Suomen lääketieteellinen ME/CFS-yhdistys ry on Facebook.

Long COVID, ME/CFS ja hypermobiliteetti: Expanding Your Toolbox -webinaarit
https://psyfy.net/long-covid-me-cfs-ja-hypermobiliteetti-expanding-your-toolbox-webinaarit/

Google Translate, English

mango · Dec 3, 2023

ME-sjuka Jennie var sängliggande dygnet runt: "Jag åt mig frisk på bara kött"
https://www.allas.se/halsa/me-sjuka-jennie-at-sig-frisk-pa-kottdiet/10073989

Google Translate, English

Auto-translate said:

ME sufferer Jennie was bedridden 24 hours a day: 'I ate only meat to get well'

Jennie was so severely ill that she considered euthanasia. Today, she manages her family and runs a part-time dog day care centre. Her salvation lay - at least in part - in food. Now she has written the cookbook that she hopes will help other ME sufferers. [...]

It's hard to imagine that a few years ago she was lying in a room in the basement of the house - a prisoner in her own body. She couldn't stand sound or light, couldn't move, let alone live with her family and take care of her children - I didn't exist as a person then. I didn't feel like a human being, I was more like a... piece of furniture.

Jennie had been diagnosed with ME, the disease with the absolute lowest quality of life when estimating the quality of life for different conditions.

Myalgic encephalomyelitis has long been a controversial disease and has been dismissed by medical science. It has been called everything from "yuppie disease" to chronic fatigue syndrome, and for a long time the medical community claimed that the disease didn't even exist - or was psychological.

Now the diagnosis is recognised - but there is still no cure. Often the disease comes after a severe viral infection, but in Jennie's case it came suddenly and without her being sick. [...]

ME is typically characterised by what is known as effort-induced deterioration (PEM).

- Every time you exert yourself too much, you get what's called PEM, and if you go over the limit and push yourself too much, physically or mentally, you end up crashing and the whole system shuts down. You become paralysed throughout your body and all you can do is rest.

With each crash, as she calls it, Jennie got worse, the crash was longer and the deterioration was permanent.

- "I got new symptoms and got worse and worse... I don't know how long it took before I was completely bedridden.

Jennie describes how she crawled to the toilet, couldn't move a finger, couldn't talk, and lay down in a bed in the basement. This was the only way to shield herself from the sounds and lights to which she was hypersensitive.

- "I was like a wreck, I couldn't cope with anything. I ate in bed and couldn't stand being up at all. I was dead as a person.

Of course, there have been times when she has been ready to give up.

- "When I've felt that the quality of life is completely non-existent, I've been on the verge of thinking 'I don't want to do this anymore'." [...]

After what Jennie describes as her worst period, she learnt about a new medicine in Norway. Rituximab [...] Jennie knew there were risks with an untested medicine for ME, but if there was even a small chance of feeling better, she wanted to take it. It cost her SEK 250 000 out of her own pocket - but she got better. [...]

In addition to the Norwegian medicine, Jennie has been and is still being treated with antiviral medicine through a private clinic. [...]

She tried an anti-inflammatory diet, but found it cumbersome.

LCHF made a noticeable difference and Jennie realised that the less carbohydrates she ate, the better she felt. She cut out more and finally came across the carnivore diet.

- "I tried egg fasting, just eating eggs, for four days, and I felt much, much better, so I decided to give it a full go." This was three years ago, and Jennie has been on the carnivore diet ever since.

- I only eat pure protein, butter, salt and eggs," she says. [...] There is no sauce, no vegetables or potatoes.
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mango · Dec 3, 2023

Video (3 + 4 + 0,5 minutes; in Swedish) + written news article:

Ameliekliniken i Solna massmedicinerar långtidssjuka: ”Livsfarligt”
https://www.svt.se/nyheter/inrikes/...medicinerar-langtidssjuka-livsfarligt--60a0e5

Google Translate, English

Auto-translate said:

The Amelie Clinic in Solna mass-medicates long-term patients: " Life-threatening"

A private clinic in Solna gives people who have been ill for years with post-viral fatigue syndrome such as ME and post-covid drugs that are not approved by the National Board of Health and Welfare. Two patients have now reported the doctor to the Health and Care Inspectorate, and SVT's investigation shows that many more patients have experienced side effects.

- 'I suffered from pain and fatigue. Jonas told me that my immune system was very affected and that I was very sick. And I trusted him," says Annika, whose real name is something else.

For three years, she received the antiviral Valganciclovir, which is normally given to AIDS patients for eye infections, and the HIV drug Ritonavir. She was also given the psoriasis drug Otezla. But she only had side effects, she says.

- "There were constant headaches, extreme fatigue, diarrhoea and elevated liver values," she says.

And Annika is not alone.

Many positive - despite side effects

SVT's review of closed groups on social media shows that many describe side effects. We find at least 28 prescription drugs. The most common are Valganciclovir and the diabetes drug Metformin. Around 30 people have discussed various side effects in the groups.

Most of them are still very positive.

But two of the patients have reported the clinic to Ivo, as Dagens ETC was the first to report.

Doctors raised the alarm: "Sounded weird"

And last year, general practitioner Björn Stridh at the Kry Gallerian health centre reacted.

- A patient came and had been given Valganciclovir and Otezla for post-covid. I thought it sounded strange. There are side effects and I couldn't find any research showing that this treatment produces results," says Björn Stridh.

He wrote to Ivo asking the authority to investigate whether the clinic was engaging in 'quackery'.

The clinic: Care is evidence-based

Jonas Axelsson, a doctor at the Amelie Clinic, told SVT that his care is evidence-based and that he does not treat ME. After the conversation, the diagnosis of ME was removed from the website.

He says that tests show that the herpes virus that most people have had in their bodies for a long time has started to affect the body, and that he therefore prescribes Valganciclovir.

"There is insufficient knowledge for us to issue treatment recommendations," says Thomas Lindén, head of department at the National Board of Health and Welfare. The National Board of Health and Welfare has been tasked by the government to develop knowledge support for post-covid and other post-viral, or post-infectious, conditions by 14 August 2024. Photo: Iman Tahbaz.

"Can be life-threatening"

But the theory is not proven. According to the National Board of Health and Welfare, there is no evidence for anything other than symptom relief. And other doctors warn against the treatment.

- 'You are using drugs that can be fatal,' says Christer Lidman, senior physician and specialist in infectious diseases at the post-covid clinic at Karolinska Huddinge.

- 'I know the drug and the side effects and we have control systems in place,' says Jonas Axelsson.

He says he removes medication immediately in case of liver damage.

The Amelie Clinic

The clinic started in 2019. Jonas Axelsson is the only doctor. He is an immunologist, has worked at Karolinska Hospital and previously conducted research, including laboratory tests linked to long-term disease states after viral infections.

ME is described as a post-viral fatigue disease just like post-covid. The number of patients is increasing but it is not known why they are ill. According to the National Board of Health and Welfare, there is no knowledge of how to treat it, and patients only receive symptom-relieving drugs in the public healthcare system.

The Amelie Clinic's patients have often been diagnosed with ME, post-covid or fibromyalgia in the public healthcare system. However, because the doctors have not found anything wrong with the body, the patients have not been helped, even though many have been ill for years.

They describe the Amelie Clinic and doctor Jonas Axelsson as their last hope. However, the clinic has no agreement with Region Stockholm, so patients pay for their care themselves, 4 000 SEK per visit.

At the Amelie Clinic, they receive treatment that they do not receive in the regular healthcare system. This includes antiviral drugs, diabetes medication, antihistamines and more. Patients often describe receiving a number of medications, sometimes at the same time. This is shown by SVT's review of closed Facebook groups, among other things.

The private clinic has been reported twice to the Health and Social Care Inspectorate for misdiagnosis and incorrect treatment. They are being investigated and no decision has been made by IVO.
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ETA: In the video interview Axelsson says that the diagnosis ME/CFS is the problem and calls ME/CFS a "rubbish bin diagnosis" for all kinds of fatigue and tiredness. The reporter asks what he thinks patients feel about his statement. He replies that he believes that patients agree, and that patients obviously don't want a diagnosis that leads nowhere, they want a diagnosis that has potential treatments and access to health care.

mango · Dec 3, 2023

Video (2 minutes, in Swedish) + written news article.

Hatiska reaktioner på Facebook under SVT:s granskning av Ameliekliniken
https://www.svt.se/nyheter/inrikes/...der-svts-granskning-av-ameliekliniken--zoxwen

Google Translate, English

Auto-translate said:

Hateful reactions on Facebook during SVT's investigation of the Amelie Clinic.

The Amelie Clinic has controversial treatment methods, and is the last hope for several hundred severely ill patients with ME and post-covid. When some patients report the clinic to the Swedish Health and Social Care Inspectorate (IVO), and journalists start investigating, the mood is whipped up against the patients who have contacted IVO or the media.

Annika is one of several patients who eventually questioned the treatment. She contacted SVT. But she does not want to use her own name.

- "I am afraid that I will receive threats in various ways," says Annika.

In closed groups on social media, the clinic's doctor Jonas Axelsson is praised. Patients discuss illness and medication. When two patients report to IVO, it quickly becomes a big issue.

Called 'traitor' on social media

In the Facebook group he runs, with 4 900 members, Mats Lindström, chairman of the Association for Difficult-to-Diagnose Infectious Diseases, notes that "some have chosen to report to the Swedish Health and Social Care Inspectorate" and calls the doctor's methods "honourable".

He writes a letter to IVO arguing against the IVO reports.

Members of the Facebook groups criticise patients who have reported to IVO.

It is reported that SVT, and also Dagens ETC, are investigating the clinic. Those who talk to the media and provide information about what is written in the Facebook groups are called 'traitors' and accused of wanting revenge. Interviewed patients are asked to withdraw their participation.

Patient association defends the clinic

The chairman of the patient association, Mats Lindström, who seems to think that we work for Uppdrag Granskning, writes a blog post with the headline "Uppdrag Granskning can destroy more than just a life".

When we call him, he doesn't think that he has stirred up any anger against patients who have exercised their right to report improper care, or against investigative journalists. He says that the reactions are about the fact that the shortcomings in the public care of ME patients do not receive attention.

- "I do understand that there are those who are probably very angry specifically about these two people," he says.

After the interview, Mats Lindström wrote in a post that he "has been a criminal police officer for many years", and that the interview "could be compared to a police interrogation in perhaps North Korea or possibly Russia".
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mango · Dec 3, 2023

Video (4 minutes, in Swedish) + written news article.

Kritiserade läkaren på Ameliekliniken: ”Ute efter en ny Macchiarini”
https://www.svt.se/nyheter/inrikes/...ekliniken-ute-efter-en-ny-macchiarini--uug00z

Google Translate, English

Auto-translate said:

Criticised doctor at the Amelie Clinic: "Looking for a new Macchiarini"

Prominent infectious disease specialists warn against doctor Jonas Axelsson's treatment of patients with ME and post-covid at the Amelie Clinic in Solna. The National Board of Health and Welfare does not support it either.

- 'I am an expert in Sweden. I am at the forefront,' says Jonas Axelsson.

At the private Amelie Clinic in the old Karolinska Hospital premises, Jonas Axelsson treats patients with post-viral fatigue syndromes such as ME and post-covid. When he receives SVT for an interview, we are met by several people. One is a film maker and is accompanied by a person who does not want to give their name.

- 'I have about 30 patients who have gone from being completely bedridden to working today,' says Jonas Axelsson.

Jonas Axelsson believes that it is his customised medication that makes them better.

Chief physician warns: Dangerous path to take

The patients receive a number of drugs that they do not receive in public health care, including the antiviral Valganciclovir, which in Sweden is otherwise used for organ transplants and for AIDS patients against eye infections.

- This is a dangerous way to go. The drug has side effects that can be life-threatening," says Christer Lidman, senior physician and specialist in infectious diseases at the post-covid clinic at Karolinska.

Rejecting the risks

- 'I know the drug and the side effects and we have control systems in place. No patient has suffered permanent damage," says Jonas Axelsson.

Christer Lidman warns that Valganciclovir can affect the bone marrow, lower the immune system and even cause blood poisoning.

- "This is always a risk you have to calculate," says Mr Lidman.

And the benefits are unproven according to a number of doctors and researchers, as well as the National Board of Health and Welfare.

Hypothesis: Herpes virus behind fatigue symptoms

The cause of post-viral fatigue diseases is not known. One of several hypotheses is that the herpes virus most people contracted as children causes the symptoms.

Jonas Axelsson takes a large number of samples. He says he finds active herpes viruses in some ME patients.

But finding parts of the virus in blood samples is not enough, according to Mr Lidman.

- "You have to find a virus propagation in itself, and we can't do that," he says.

Those who reported the clinic to IVO state that they were misdiagnosed. One had ADHD instead, according to the report.
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mango · Dec 3, 2023

Article about healthcare inequality by Agnes Arpi. ME is mentioned.

Vård på olika villkor
https://fredrikabremer.se/hertha/vard-pa-olika-villkor-2/

Google Translate, English

Auto-translate said:

Care on different terms

Access to and quality of healthcare differs between men and women in Sweden - women's health is also worse than that of men. For many people with diagnoses that mainly affect women, getting care is a struggle. What happens in an already unequal healthcare chain when the economy is in crisis and regions are forced to make savings?

In 2023, the alarm bells are ringing: regional and municipal deficits are enormous, and so are the cuts. At the same time, women's healthcare has recently been highlighted both at the highest political level, with a series of promises of improvements, and repeatedly in the media. Women's healthcare is "in", but what are the consequences of austerity? [...]

The National Association of ME Patients*, RME, not only brings together women, but more women than men are diagnosed. The only specialist clinic in Stockholm, which had been accepting patients from all over the country, has now lost its contract with the region. The patient group has also grown in connection with COVID-19.

Jenny Lundgren, President of RME, is concerned about this development. In June 2023, she wrote a debate article in Altinget, together with the Covid Association, about how clinics for post-Covid and ME are being closed down in region after region due to lack of resources.

- "We think that the state must review the resources. There have been wars, pandemics and infections that have eroded resources in our [regional healthcare systems]. If we are to have a healthcare system worthy of the name, and not a lot of patients who might have been able to get better but instead sit at home, it is money well invested," says Jenny Lundgren.
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mango · Dec 3, 2023

Video (1 min, in Swedish) + written news article.

Läkaren Artur Fedorowski användes i Amelieklinikens forskning – utan hans vetskap
https://www.svt.se/nyheter/inrikes/...klinikens-forskning-utan-hans-vetskap--zfr3kn

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Doctor Artur Fedorowski was used in the Amelie Clinic's research - without his knowledge

Doctor Jonas Axelsson wants to do research on patients at the Amelie Clinic. When he applied for authorisation to research samples from the patients in 2020, he listed several participating researchers. But cardiologist Artur Fedorowski, now a professor at Karolinska University Hospital, was included without knowing anything.

- 'It feels uncomfortable. I feel used,' he says.

When the Amelie Clinic started in 2019, Jonas Axelsson had been researching virus-related diseases for several years. For example, together with cardiologist Artur Fedorowski, he had analysed blood samples from American patients with POTS.

Then the pandemic broke out and the number of patients at the clinic increased rapidly. Jonas Axelsson wanted to take samples from his own patients and applied for ethical authorisation in August 2020.

Received millions in research funding

Jonas Axelsson has now received SEK 5 million from the Kamprad Foundation for a treatment study on his patients. He wants to use the antiviral Valganciclovir, the same medicine that he says he has already treated around 100 patients at the clinic with.

There is no evidence that treatment with antivirals works. Recently, doctors and researchers in Norway warned against medication for post-viral diseases.

- 'Even if there are reactivated viruses, there is no evidence that this is what causes the patients' symptoms,' says Professor Vegard Bruun Bratholm Wyller at the University of Oslo.

However, research studies are ongoing, including one at Karolinska where another antiviral drug is being tested in a placebo study on post-covid patients.

Professor: Bad study

But Jonas Axelsson's study was rejected by Clinical Immunology, the Academic Specialist Centre and the Academic Primary Care Centre in Region Stockholm. This is revealed in an email exchange that SVT has read. Instead, Uppsala University has accepted the money for it and Professor Jonas Bergquist has offered to collaborate. But even he is doubtful about this particular medicine. He has warned about liver toxicity and has not seen the drug help with post-viral diseases.

- 'The study I have seen was a really bad study, I don't think you can say anything from it,' says Jonas Bergquist.

The research has not started yet. The application to the Ethical Review Authority has not even been submitted, SVT's review shows.

- 'We are working on the application,' says Jonas Axelsson.

See the heart doctor's reaction in the clip.
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