News from Scandinavia

[Sean]

Most up-to-date professionals have long since shelved the Lightning Process.​

Which raises the question of why the hell were they recommending such obvious methodological and ethical garbage in the first place?

 

[Peter T]

Most up-to-date professionals have long since shelved the Lightning Process.​

Which raises the question of why the hell were they recommending such obvious methodological and ethical garbage in the first place?

When Prof Crawley published her LP for children study, I thought it would be the reductio ad absurdum of the whole PACE type methodology, however the reverse happened (presumably via cognitive dissonance) and the BPS establishment embraced LP.

LP was so obviously a quack intervention, I foolishly thought ‘establishment’ researchers would realise with the LP study that their preferred methodology was so bad it would support any nonsense and thus undermine the identical rubbish studies advocating GET/CBT. However rather than abandon GET/CBT many have give st least tacit support for LP.

 

[Sean]

That study is the poster child for how fundamentally broken medicine is on this stuff.

 

[mango]

More bad news from Stockholm, which affects all of us since they are the only dysautonomia specialist clinic in Sweden. Not specifically about ME, but it is affecting many pwME. No official info yet, the Swedish Covid Association is looking into it.

An important update from the Swedish Covid Association:

Goda nyheter om Hjärt-kärlmottagningen Karolinska
https://covidforeningen.se/goda-nyheter-om-hjartkarlmottagningen-karolinska/

Good news about the Karolinska Cardiovascular Clinic

If you have been discharged from Karolinska's Department of Cardiovascular Medicine and do not feel that everything has been done correctly and safely, contact the clinic either via 1177 or via Alltid Öppet and let them know that you want to be readmitted. The doctors will then review your case again. If you do not get in touch, they will not do anything more, so it is important that you contact the centre.

Reasons for an incorrect discharge may include:

• Your primary care doctor cannot/will not prescribe the medicine you need
• The handover is not properly documented in your medical record so that the primary care doctor has the right information and can continue your medication
• You are in an ongoing investigation that needs to be finalised
• You have been asked to discontinue (i.e. reduce/stop) medication that works for you and that you want to continue

If you have been discharged to primary care and want to continue to receive help there, you can refer your GP to the Internet Medicine article on POTS. It has been fact-checked by some big names, so your doctor should take note of what it says: https://www.internetmedicin.se/kardiologi/posturalt-ortostatiskt-takykardisyndrom-pots

It is also important to report to the Patient Complaints Board if you are affected by an incorrect discharge, so that we can publicise the problem and get figures on how many people have been affected. It gives us weight and arguments in discussions with politicians and other decision-makers.

Thank you so much for all your hard work, Swedish Covid Association!

@MittEremltage comments on this on her blog today:

Viktig information till personer med POTS som blivit utskrivna från Karolinska!
https://mitteremitage.wordpress.com...ed-pots-som-blivit-utskrivna-fran-karolinska/

 

[mango]

Good news, for a change

Press release:

Svenska Covidföreningen beviljas stöd till patienter med postcovid
https://covidforeningen.se/svenska-covidforeningen-beviljas-stod-till-patienter-med-postcovid/

The Swedish Covid Association is granted funding for patients with post-covid

Children and young people with post-covid often struggle to cope with school and other everyday activities, yet lack support from society. The Swedish Covid Association is therefore investing in a project aimed at supporting young people, and also adults, with post-covid. It has now been announced that the Swedish Inheritance Fund [Allmänna arvsfonden] will grant funds for three years.

- ‘We are very pleased to receive this grant, which will enable us to provide training and support to those affected. Our goal is to contribute to public education about our new widespread disease,’ says Lisa Norén, doctor and spokesperson for the association.

According to international research, about one per cent of children and young people are affected by post-covid, which means about 10,000 children in Sweden. For many, it means that life has changed drastically. Severe fatigue, headaches and difficulty tolerating exertion are very common.

The symptoms make it difficult to cope at school, spend time with friends or participate in leisure activities. Some people are so seriously ill that they are bedridden. Many of the symptoms of post-covid can be alleviated through treatment, making a big difference to patients. However, knowledge of post-covid varies across the healthcare system, as too few doctors have received training on this new widespread disease.

- Our members tell us how their previously healthy and active children have been pinioned by COVID-19, but still haven't received the help they would expect. Their lives are put on hold. Others I have met tell me how their children's illness has worsened due to the ignorance of the healthcare system,’ continues Lisa Norén.

Recently, the Swedish Inheritance Fund decided to fund the Swedish Covid Association's project ‘Health and good living conditions for people with post-covid’. This means that the association now has the opportunity to implement several supportive initiatives for those affected.

- The project is a good example of how to include and engage people affected by post-covid and how methods and activities can be developed by and for the target group. With support from the Swedish Inheritance Fund, new ideas can grow for a society where everyone can participate on equal terms,’ says Solveig McKenzie, Head of Unit at the Swedish Inheritance Fund.

The project has two branches, one focussing on children and young people and their families and the other focusing on people of all ages who have post-covid. One planned intervention is study circles for parents so that they can support their children/young people. The Swedish Covid Association will also develop school materials to help young people and their parents engage in dialogue with the school, in order to best adapt schooling.

Other activities planned include a helpline, customised self-care exercises and developing more information material on post-COVID. The Swedish Covid Association not only wants to support those affected but also to highlight post-covid as an important social issue.

- ‘We need to talk more about the fact that post-covid is a highly ongoing sequelae and not just a “residual problem”. If most people don't realise that hundreds of thousands are affected in Sweden alone, and how seriously the disease also affects children and young people, they won't get the right help. That's why this project is so important,’ says Anja L Sundberg, Vice President of the Swedish Covid Association.

Facts: Post-Covid

• 1 in 30 infections leads to post-covid, the general name for the various sequelae that can occur after COVID-19.
• Post-COVID affects all ages, including children, and there are no clear risk groups.Even people who have had a mild COVID-19 infection can develop post-COVID.Some fall ill after their first infection, others only after their third, fourth or fifth.
• Some people with post-COVID get better over time, but for many others it is long-lasting.
• There is no cure yet.

We will soon start recruiting for positions within the project and more information will be available on the website shortly. Are you interested already? Send an expression of interest to: jobb@covidforeningen.se

The Swedish Covid Association is a patient organisation for those with COVID-19 and post-COVID. The association works for more patient-centred research, access to equal and evidence-based care and an adequate social safety net for those affected.

News article (audio, in Swedish, 2 minutes):

Unga med postcovid ska få bättre stöd i skolan
https://sverigesradio.se/artikel/unga-med-postcovid-ska-fa-battre-stod-i-skolan

Young people with post-covid to get better support at school

Young people with post-covid will now receive better support with their schooling, in a project funded by the Public Heritage Fund.

This is the first time that this kind of support has been given, focusing on children with long-term covid.

‘We are very happy to receive this grant, which enables pioneering efforts for education and support for affected children and young people and their families,’ says Lisa Norén, a doctor and spokesperson for the Swedish Covid Association, which has been granted funding for three years.

The Swedish Inheritance Fund (Allmänna arvsfonden) is described by government.se as follows:

"If a deceased person has no spouse or close relatives and has not left a will, his/her property goes to the Swedish Inheritance Fund. The Fund supports non-profit organisations and other voluntary associations wishing to test new ideas for developing activities for children, young people, older people and the disabled."

More info here, in Swedish:
https://www.arvsfonden.se/om-allman...hur-kommer-pengar-in-till-allmanna-arvsfonden

 

[mango]

On Swedish morning TV (9 minutes, available to watch online through the link below):

Artistens tuffa tid efter sjukdomen: ”Visste inte om jag skulle bli frisk”
https://www.tv4.se/artikel/5Ke8RoGL...a-med-postcovid-den-tuffaste-tiden-i-mitt-liv

The artist's tough time after the disease: ‘I didn't know if I would recover’

150,000 Swedes live with post-covid - Eleonor Léone: ‘I could barely talk to my partner’

Eleonor Léone was in the midst of a successful music career when she was struck by COVID-19.

What initially seemed like a simple flu turned into a long and difficult battle with post-COVID.
After more than three years of rehabilitation, she has now found her way back to the stage - but the disease has left a deep mark.

- ‘I'm still not one hundred per cent recovered,’ she tells Nyhetsmorgon.

Approximately 150,000 Swedes are living with long-term and serious problems after contracting COVID-19, which means that the condition can be considered a widespread disease. Before falling ill, Eleonor led an active and energetic life with gigs, training and creative projects. But when she fell ill in May 2021, everything changed.

- ‘I could barely talk to my partner, and getting from bed to the toilet was a struggle,’ she says.

A long road back

What at first looked like a short-term illness became a protracted battle. Two weeks became months, and months became years. Eleonor lost touch with her friends and noticed her life gradually shrinking. The biggest loss was no longer being able to be on stage - a place that had always been her greatest joy.

- I lost everything that defined me. It felt like losing your whole life,’ she says.

To this day, Eleonor struggles with residual symptoms such as brain fatigue and heart palpitations. She describes how physical exertion often leads to setbacks with fever and cold symptoms.

- ‘I was part of a pressure chamber study at Karolinska and underwent ten pressure chamber treatments. I didn't get better from the study, but I wanted to share my experience to help others,’ she explains. [...]

 

[Kalliope]

Good news, for a change

Press release:

Svenska Covidföreningen beviljas stöd till patienter med postcovid
https://covidforeningen.se/svenska-covidforeningen-beviljas-stod-till-patienter-med-postcovid/


News article (audio, in Swedish, 2 minutes):

Unga med postcovid ska få bättre stöd i skolan
https://sverigesradio.se/artikel/unga-med-postcovid-ska-fa-battre-stod-i-skolan


The Swedish Inheritance Fund (Allmänna arvsfonden) is described by government.se as follows:

"If a deceased person has no spouse or close relatives and has not left a will, his/her property goes to the Swedish Inheritance Fund. The Fund supports non-profit organisations and other voluntary associations wishing to test new ideas for developing activities for children, young people, older people and the disabled."

More info here, in Swedish:
https://www.arvsfonden.se/om-allman...hur-kommer-pengar-in-till-allmanna-arvsfonden

That's wonderful news, and a huge amount of money! Also wonderful that this work will be done by the Covid Association, and not BPS people. I wonder if they'd be interested in cooperating with, or building upon the work done by the Norwegian ME Association who developed a course for teachers about pupils with ME. It's also in Swedish version.
https://www.meochskola.se/

 

[mango]

Good news, for a change

Press release:

Svenska Covidföreningen beviljas stöd till patienter med postcovid
https://covidforeningen.se/svenska-covidforeningen-beviljas-stod-till-patienter-med-postcovid/

Läkartidningen: Covidföreningen startar nytt projekt för att stötta unga med postcovid
https://lakartidningen.se/aktuellt/...tt-projekt-for-att-stotta-unga-med-postcovid/

Covid Association launches new project to support young people with post-covid

The Swedish Covid Association wants to support children and young people affected by post-covid by producing school materials for adapted schooling. The project has now been granted funding from the Swedish Inheritance Fund for three years.

- ‘We are very pleased with this grant, which will enable pioneering efforts in education and support for those affected. Our goal is to contribute to public education about our new widespread disease,’ said Lisa Norén, doctor and spokesperson for the association, in a statement.

‘Children and young people with post-covid often have difficulty coping with both school and everyday activities, but still lack support from society,’ writes the Swedish Covid Association in a press release. Therefore, the association wants to support both children and adults affected by postcovid in a new project. Thanks to money from the Swedish Inheritance Fund, the association is now planning to produce school materials to help students and their parents to engage in dialogue with schools and to adapt their schooling in the best possible way. It also wants to organise study circles for parents to give them better tools to support their children. A new helpline is also on the agenda for the future.

According to the Karolinska Institute, up to 150,000 Swedes are living with long-term serious problems following a COVID-19 infection. The Swedish Covid Association estimates that around 10,000 of those affected are children.

 

[Dolphin]

https://twitter.com/user/status/1876081463059415117

I am going to spend 2 weeks in Norway this June traveling between Bergen and Kristiansund. Even though it will be family time, I would love to meet some of you for a few hours, if possible. It’s always great to interact with all of you. I did this a couple of years back in Belfast and it became a memorable afternoon for me. If there are any ME patient community in Bergen area and would like to meet me formally or informally, let me know by email.

 

[mango]

Good news, for a change

Press release:

Svenska Covidföreningen beviljas stöd till patienter med postcovid
https://covidforeningen.se/svenska-covidforeningen-beviljas-stod-till-patienter-med-postcovid/


News article (audio, in Swedish, 2 minutes):

Unga med postcovid ska få bättre stöd i skolan
https://sverigesradio.se/artikel/unga-med-postcovid-ska-fa-battre-stod-i-skolan


The Swedish Inheritance Fund (Allmänna arvsfonden) is described by government.se as follows:

"If a deceased person has no spouse or close relatives and has not left a will, his/her property goes to the Swedish Inheritance Fund. The Fund supports non-profit organisations and other voluntary associations wishing to test new ideas for developing activities for children, young people, older people and the disabled."

More info here, in Swedish:
https://www.arvsfonden.se/om-allman...hur-kommer-pengar-in-till-allmanna-arvsfonden

Job ad:

Gör skillnad – arbeta med helt nytt postcovidprojekt
https://covidforeningen.se/jobba-hos-oss-2/

 

[mango]

(Not about ME.)

A Swedish opinion piece on Rituximab and ethical questions regarding treatment studies on people living with schizophrenia.

”Vår behandling kan rädda liv – men kanske får vi aldrig veta”
https://www.dn.se/debatt/var-behandling-kan-radda-liv-men-kanske-far-vi-aldrig-veta/

 

[mango]

Opinion piece written by the chairperson of RME (the Swedish ME Association).

Sveriges usla ME-vård bidrar till att patienter begår självmord
https://www.altinget.se/artikel/sveriges-usla-me-vaard-bidrar-till-att-patienter-begaar-sjalvmord

Sweden's poor ME healthcare contributes to patients committing suicide

At least 10,000 Swedes with ME are bed-bound and unable to leave their homes. Many are so ill that they see no other way out than to take their own lives. This is according to Jenny Lundgren, President of the Swedish National Association for ME Patients.

ME is classified as a neurological disease by the WHO and is often referred to as neuroimmunological. It is a complex, chronic, multi-system disease in which the nervous system, immune system and energy production are affected. The hallmark of the disease is a new onset and marked disabling energy deficiency and post-exertional malaise (PEM).

Many are bedridden

PEM means that the condition worsens after both physical and mental activity that exceeds the body's tolerance level and can lead to long-term deterioration. Other common symptoms include flu-like symptoms with fever, headache, muscle aches, memory and concentration difficulties, sensitivity to sensory input, and a drop in blood pressure. They vary in severity.

Around 25% of patients are housebound or bedridden. Many wear ear defenders and blindfolds because they are sensitive to sound and light. Some are so badly affected that they are tube-fed.

To explain how ME affects your energy, it's often compared to a mobile phone battery you charge at night. When most of us wake up, we are ready for a day of activities. Our battery is usually full. But for someone with ME, the battery is at maybe ten per cent max. Many ME sufferers can barely manage to walk to the toilet. If they do, they often need a long rest afterwards, sometimes for the rest of the day.

Advanced care is lacking

ME is often compared to the most severe stages of cancer or AIDS. But while in the latter diseases there is advanced care and access to medication, the opposite is true for ME sufferers. There are symptom-relieving medications that work for many, but since the last specialist clinics for ME sufferers have closed, they are referred to primary care. General practitioners there are reluctant to prescribe medication because they believe there is not enough research to support it.

The specialist clinic in Stockholm has been closed because the Stockholm Region decided to abolish the choice of care. The post-infectious centre at Huddinge Hospital does not accept patients diagnosed with ME. Only undiagnosed patients can come there.

If you are diagnosed with ME and your energy level is severely reduced, you still need to prepare yourself for having to fight for compensation from the Social Insurance Agency. With the little energy that ME patients have, it's often impossible to put the energy into fighting the bureaucracy.

Doctors refuse to recognise ME

There are many family members who care for their loved ones and suffer greatly from their situation. Getting help with care is not a given. There are a number of stories of both ME sufferers and carers who have taken their own lives.

The most famous people with ME in Sweden are author Karin Alvtegen, who can no longer write books. And the lead singer of the band Broder Daniel, Henrik Berggren, who for many years has been so lacking in energy that he has been largely bedridden.

As if it wasn't serious enough, many doctors refuse to recognise ME as a diagnosis. Many of our members report unworthy treatment and strong disbelief from the medical profession.

This is what needs to be done to improve the situation for ME sufferers:

• Establish a national knowledge centre. The government should urgently establish a national knowledge centre for ME, as decided by Parliament in 2018.
  
  
• Establish regional specialist clinics. The government should promote increased specialised care for ME patients, with the aim of establishing a specialist clinic in each healthcare region.
  
  
• Deepen research. The government should initiate a long-term strategy for both patient-centred clinical research and biomedical research on ME.
  
  
• Educate carers. The government should commission the National Board of Health and Welfare to carry out awareness-raising initiatives aimed at healthcare providers, with a particular focus on ME.
  
  
• Create a patient register. The Government should commission the National Board of Health and Welfare to establish a patient register for the diagnosis of ME, similar to the Swedish Multiple Sclerosis (MS) register, which has existed for almost 25 years and has become an important tool for developing MS care.
  
  According to the Patients Act, health care should be accessible to all. The tens of thousands of Swedes living with ME are entitled to good, specialised care and much better social support than today. The Minister for Health, Acko Ankarberg, urgently needs to ensure that ME sufferers and their families get the help they need. Otherwise, far too many will continue to suffer unnecessarily.

 

[MittEremltage]

Opinion piece written by the chairperson of RME (the Swedish ME Association).

Extremely problematic article IMHO. I wrote an open letter to RME (Google translated link):
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

 

[mango]

Article in a local news paper this morning. This is the reality for so many of us. The government seems to believe they will be able to force us back to work if they just punish us enough financially.

Fångad i fattigdom: ”Jag har inte råd med mat eller mediciner”
https://www.smp.se/2025-01-12/fangad-i-fattigdom-jag-har-inte-rad-med-mat-eller-mediciner/

Trapped in poverty: ‘I can't afford food or medicine’

Teresia Kindstrand is chronically ill and on disability pension. She lives in financial poverty - and now she will be even worse off.

- ‘I won't be able to afford food or medicine,’ she says.

[Image caption] 52-year-old Teresia Kindstrand suffers from ME and is on early retirement.

If you live on sickness benefit, disability benefit or other benefits from the Swedish Social Insurance Agency, you usually live with very small financial margins.

This year it will be even worse.

Sick people can expect SEK 1300 less in their wallet each month, according to the National Association of People with Disabilities' annual report on people with sickness or activity compensation.

Teresia Kindstrand is one of those affected. She is 52 years old and suffers from a chronic and incurable neurological disease. As a result, she has been on early retirement and living on sickness benefit for a few years now.

She lives alone in a small three-room apartment in the centre of Växjö and is dependent on home help to cope with everyday tasks. When she has paid her fixed monthly expenses, she has about SEK 4,000 left over.

This money should be enough for food, clothes, hygiene products, leisure, entertainment, subscriptions, glasses and recreation.

- In December, I had to skip dinner to afford the extra costs associated with Christmas celebrations.

But now the belt will be tightened even more.

The level of compensation from the Social Insurance Agency is governed by the price base amount, which is adjusted upwards each year in line with prevailing inflation and cost increases. At the turn of the year, the price base amount was adjusted with a record low increase. From SEK 57,300 to SEK 58,800. The increase of just 2.6 per cent is justified by the government on the grounds that inflation has fallen sharply this year.

- At the same time, my rent has been raised by around 5 per cent two years in a row. And then there are all the other cost increases for things like electricity and food.

In addition, from 1 July this year, the government will shockingly increase the co-payment for medicines from SEK 2,900 to SEK 3,800.

This increase will hit those on sick leave and early retirement hard.

According to FUB's calculations, the marginal increase in the price base amount and thus the sickness benefit will be eaten up by higher rents, more expensive medicines and other cost increases in society.

- ‘With SEK 1,300 less in my wallet, I won't be able to afford either food or medicine in the last week of the month,’ she says.

When we meet, there are 10 days left until her benefit is paid. There is SEK 600 left in her account. In other words, Teresia has 10 lean days ahead of her.

At the same time, she is prevented from hunting for discounted prices because she is housebound due to her illness.

- ‘The home care service does the shopping for me, and they don't have the time or opportunity to go round looking for red price tags. Therefore, I have quite high food costs. If there is a month with extra expenses, such as Christmas, I have to eat fewer meals a day.

Her dream is to be able to go to the cinema or sometimes to a restaurant. The last time she had a party was a year and a half ago.

- Then I was with a friend at Askelyckan. I ate a roll and drank coffee. That's the last time I had coffee outside. I can't remember when I was last in a restaurant.

But what's even worse is not being able to afford to treat your son or your ageing parents to anything. Not even for a coffee.

- Yes, that's probably the worst of all, it feels awful.

 

[MittEremltage]

Chronicle by Agnes Arpi in Altinget today about society's betrayal of people with ME and post-COVID, illustrated by the collapse of the National Board of Health and Welfare, which is now proving to be larger than we have known so far. She reports that the Swedish Covid Association has therefore filed a complaint against the National Board of Health and Welfare:

'Recently, the Swedish Covid Association has chosen to file a complaint against the National Board of Health and Welfare. While the authority chose not to conduct a consultation round, the Covid Association and others nonetheless relied on the government's assignment description to the National Board of Health and Welfare, which emphasizes dialogue with patient representatives, and submitted several comments. These have, unlike other documents, never been registered, according to the Covid Association, which would be in violation of applicable law.'"

Link:
https://www.altinget.se/artikel/svenska-covidforeningen-jo-anmaler-socialstyrelsen

Svenska Covidföreningen on X:
https://twitter.com/user/status/1878757625304940848

 

[mango]

Chronicle by Agnes Arpi in Altinget today about society's betrayal of people with ME and post-COVID, illustrated by the collapse of the National Board of Health and Welfare, which is now proving to be larger than we have known so far. She reports that the Swedish Covid Association has therefore filed a complaint against the National Board of Health and Welfare:

'Recently, the Swedish Covid Association has chosen to file a complaint against the National Board of Health and Welfare. While the authority chose not to conduct a consultation round, the Covid Association and others nonetheless relied on the government's assignment description to the National Board of Health and Welfare, which emphasizes dialogue with patient representatives, and submitted several comments. These have, unlike other documents, never been registered, according to the Covid Association, which would be in violation of applicable law.'"

Link:
https://www.altinget.se/artikel/svenska-covidforeningen-jo-anmaler-socialstyrelsen

Svenska Covidföreningen on X:
https://twitter.com/user/status/1878757625304940848

Agnes Arpi: Swedish Covid Association files a complaint to the Parliamentary Ombudsmen (JO) against the National Board of Health and Welfare

The Swedish Covid Association recently reported the National Board of Health and Welfare to the Parliamentary Ombudsmen (JO). While the authority chose not to conduct a consultation round, the Covid Association and others nevertheless took note of the government's mission statement to the National Board of Health and Welfare and submitted several comments. According to the Covid Association, these have never been registered, which would be contrary to current law, writes Agnes Arpi.

It is almost four years since I wrote my first column for Altinget, which was entitled ‘Those with loovid cannot be dismissed as easily as those with ME’. In it, I discussed the phenomenon of post-covid, which has now become the established name, and saw similarities with ME. But I couldn't imagine that the group with post-covid symptoms would be the same:

‘The difference is that this time it is happening in the open. COVID-19 affects the whole society. Everyone has been affected. When thousands of previously healthy people, many of them in the health professions, fall ill and then don't recover, the problem cannot be brushed aside.

It is not possible, as usual, to look for faults and shortcomings in individuals when so many are affected so severely at the same time. And when their time limited benefits comes to an end, despite the fact that many of them were affected when they were battling on the front lines against the infection, society shudders with indignation and politicians promise to immediately review the systemic shortcomings.’

That's what I wrote, and I was wrong. It was wishful thinking.

The indignation in society was temporary.

Post-covid sufferers are caricatured

Now, post-COVID sufferers have become yet another troublesome patient group that has to put up with being caricatured and psychologised into absurdity. The SVBK ideology has never gone out of fashion, but the words are different today.

The institutions of society and patients are far apart, as has become painfully clear with the development of the National Board of Health and Welfare's knowledge support for post-covid and related conditions, published in August 2024. This knowledge support, which is intended to help healthcare providers help patients with different types of post-infectious symptoms, many of them severe, is criticised by patient representatives and parts of the profession. Disagreement is normal - everyone has their own interests to protect - but this time the criticism is of a different calibre.

The National Board of Health and Welfare has a different opinion

Partly because it is about the process itself. For example, this time the National Board of Health and Welfare chose to depart from its usual model, where they compile a consultation version and ‘seek the views of patient and user organisations, professionals, businesses and other stakeholders’. According to the Swedish Covid Association, they were told that the consultation round was cancelled because ‘the whole of Sweden is on holiday after midsummer’. Thus, an opportunity for patient organisations to submit comments was closed.

Another criticism is that the National Board of Health and Welfare comes to completely different conclusions than the WHO and the British National Institute for Health and Care Excellence, NICE. Unlike these institutions, the National Board of Health and Welfare chooses to ignore the exertion-induced deterioration that is a cardinal symptom of the disease ME, which is also included in the knowledge support, which means that it recommends exercise where WHO and NICE instead advise against it. Different methodologies produce different results, but such a life-changing discrepancy does not inspire confidence. In general, the National Board of Health and Welfare's delimitations are subject to criticism: Excluding research on, for example, what post-covid and exertion-induced deterioration is, will have an impact on what rehabilitation is recommended.

In addition, the Sane association, which brings together families affected by PANS/PANDAS, infection-triggered psychiatric problems in children and adolescents, agrees with the criticism. ‘For their patient groups, the rehabilitation that is the focus of the National Board of Health and Welfare can be directly harmful, as they need treatment for the underlying disease,’ they write.

The fact that these children with psychotic delusions are also included in the contemporary chatter about cultural diseases slips under the radar. Should the children stop being stressed hypochondriacs too? Or is it their mums we are supposed to blame? Munchausen by proxy all of them?

I can recommend the podcast Maran, season 2, for a multifaceted critical perspective on the knowledge support that will govern healthcare in the future.

Swedish Covid Association now files a complaint to the Parliamentary Ombudsmen (JO) against the National Board of Health and Welfare

The Swedish Covid Association has recently reported the National Board of Health and Welfare to the Parliamentary Ombudsmen (JO). While the authority chose not to conduct a consultation round, the Covid Association and others nevertheless took note of the government's mission statement to the National Board of Health and Welfare, which emphasises dialogue with patient representatives, and submitted several comments. These, unlike other documents, have never been registered, according to the Covid Association, which would be contrary to current law.

In its complaint to the Parliamentary Ombudsmen, the association writes:

‘These shortcomings have largely meant that no real patient participation has taken place and that neither the profession nor patient organisations have been given insight into the process or the opportunity to submit comments during the consultation round.’

But an effective way to duck troublesome patient groups, nonetheless. Those who can be called achievement princesses who pay too much attention to how they are feeling and lazy people who do not want to work, at the same time. Faults and shortcomings of the individuals. SVBK 2025.

What a miserable mess.

The Parliamentary Ombudsmen (JO) are appointed by the Swedish Riksdag (parliament) to ensure that public authorities and their staff comply with the laws and other statutes governing their actions.

"The SVBK ideology" refers to the Swedish medical "code word" and derogatory slur sveda-värk-brännkärringar (loosely translated as "hags with burning aches and pains"). In the 1970s and onwards doctors often used to put "SVBK" in the medical journals of female patients with symptoms along the lines of what we now know as CFS, fibromyalgia, endometriosis, PMS, or menopause. They choose less obvious code words nowadays, since patients have the right to read their own journals and can easily access them online.

 

[mango]

Agnes Arpi recommends season 2 of the podcast Maran, by @MittEremltage. (I too very much recommend it!)

The podcast is in Swedish but all the transcripts are available in full on the blog, so it's easily translated into English through deepl.com or Google Translate etc.

Forum thread here:
https://www.s4me.info/threads/sweden-maran-season-2-how-did-we-end-up-here.40230/

 

[mango]

Extremely problematic article IMHO. I wrote an open letter to RME (Google translated link):
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

I hope you all have clicked through to read @MittEremltage's open letter to RME by now, it's really worth a read. RME has ignored the open letter so far, and has also closed their Facebook post for comments.

@MittEremltage has published an informative follow-up piece to her excellent open letter, expanding on why we don't want what happened to the Norwegians to happen to us.

Ett förtydligande av varför vi inte vill ha det som i Norge
https://mitteremitage.wordpress.com...de-av-varfor-vi-inte-vill-ha-det-som-i-norge/

Google translate, English

Sissel Sunde, Millions Missing Stavanger, has shared the blog post on their Facebook page, adding a link to Maran podcast and notes that the Nasjonal Kompetansetjeneste for CFS/ME links to the [hugely problematic Swedish podcast] Stressforskningspodden on their website, and that Maran scrutinizes Stressforskningspodden in season 2.

 

[mango]

The Covid Association shares more details about their complaint to the the Parliamentary Ombudsmen (JO). The complaint -- which is about the national clinical guidelines for long covid and other post infectious conditions, which includes ME -- is also available to download in full as a pdf, through the link below.

Covidföreningen JO-anmäler Socialstyrelsen
https://covidforeningen.se/covidforeningen-jo-anmaler-socialstyrelsen/

The Covid Association files a complaint to the Parliamentary Ombudsmen against the National Board of Health and Welfare

Both patient organisations and experts have sharply criticised the National Board of Health and Welfare's new knowledge support for post-covid and other post-infectious conditions. In addition to the fact that the National Board of Health and Welfare has ignored the most important research on post-covid, the authority has not taken into account the WHO's ‘red flags’. This poses major patient safety risks. The Swedish Covid Association is now filing a complaint against the Swedish National Board of Health and Welfare for shortcomings in the preparation process.

- ‘This process has been riddled with strange choices since the start. First, the most important research on both what post-covid is and what it is caused by is removed through delimitation. Then they choose not to carry out any consultation round with reference to the fact that ‘all of Sweden is on holiday anyway’, says Lisa Norén, a doctor and spokesperson for the Swedish Covid Association.

According to its own guidelines, the National Board of Health and Welfare must carry out consultation rounds to anchor knowledge support in patient organisations and the profession.

- Here, without being able to give any real reason, the authority has ignored important quality assurance processes and the result is accordingly.

But now it has also emerged that the National Board of Health and Welfare has violated the law by failing to diarise the views of stakeholders who have raised important patient safety issues during the work.

- In this way, the National Board of Health and Welfare has made relevant criticism invisible and made it difficult for independent journalists to scrutinise the agency's work in a way that is not compatible with a society where transparency in public administration is a cornerstone of democracy. The action is also contrary to law,’ says Caroline Malm Holmberg, lawyer and member of the Swedish Covid Association.

‘According to the Swedish Agency for Health and Care Services Analysis, healthcare for post-infectious conditions is unequal across the country and healthcare professionals are in great need of updated information.

- Therefore, we were looking forward to an updated document that could improve healthcare for tens of thousands of patients in this country. Instead, the authority has now published a knowledge support that gives healthcare less guidance than the one produced in 2021. One can really ask why Sweden is taking steps backwards when research and other countries are moving forward, says Lisa Norén.

The WHO has published guidelines that contain strong recommendations (so-called red flags) that are important to take into account to make healthcare safe for patients. These are not reflected in the work of the National Board of Health and Welfare either.

- What use is a body of knowledge that has been unanimously condemned as unsafe by those it affects - the patients? We are not alone in this view, which is also shared by doctors and researchers in the field. The National Board of Health and Welfare should take on board the criticism and start an update process immediately,’ says Lisa Norén.

 

[mango]

@MittEremltage comments on the Swedish Covid Association's complaint to the Parliamentary Ombudsmen (JO):

Om Svenska Covidföreningens JO-anmälan av Socialstyrelsen
https://mitteremitage.wordpress.com...vidforeningens-jo-anmalan-av-socialstyrelsen/

About the Swedish Covid Association's complaint against the National Board of Health and Welfare

I have gotten hold of a copy of the Swedish Covid Association's complaint to JO and in today's post I share what I have read.

In the second season of Maran, I devoted several sections to the National Board of Health and Welfare's problematic national knowledge support for post-infectious diseases and SBU's evidence report that formed the basis for this. Among other things, I talked about how the authorities had not carried out their assignment in full but had delimited certain parts in a way that made the content misleading. I also explained that the National Board of Health and Welfare had refrained from sending out the support for consultation and that they had thus departed from their own procedures and therefore missed important feedback from patients and professionals. Finally, I showed how the authorities have allowed what we do not know about post-infectious diseases to define existing knowledge, which has meant that the support contains serious patient safety risks.

And now, as Agnes Arpi reported in yesterday's column, the Swedish Covid Association has exposed further serious shortcomings in the National Board of Health and Welfare's work on the national knowledge support and subsequently reported the National Board of Health and Welfare to the Parliamentary Ombudsmen.

The complaint states that, in addition to the other problems, the authority failed to diarise letters with input from important actors in the preparation process. This applies to letters from the Covid Association itself, from the association Doctors to Doctors (which consists of doctors with post-covid) and from a doctor who has worked clinically with post-covid and ME for a long time.

The Swedish Covid Association writes in its complaint that it is clear that the National Board of Health and Welfare has not taken their views into account. They believe that the shortcomings in the process have not only resulted in medical risks (which could probably have been reduced if their views had been taken into account) but also had the effect of limiting the opportunities for scrutinising the agency's work.

The National Board of Health and Welfare has not only failed to diarise one of the Swedish Covid Association's letters, but all their letters. They have written several. Even those sent at the direct request of the National Board of Health and Welfare itself are missing from the records. At the same time, there are several letters from other patient organisations that have been registered during the project (see direct link to list below). This seems very strange and it is therefore very good that the Parliamentary Ombudsmen now has a chance to investigate what has happened and what the consequences have been.

Lisa Norén, spokesperson for the Swedish Covid Association, writes:

‘The National Board of Health and Welfare has clearly failed in its quality assurance, and never recorded comments from several patient organisations. This needs to be recognised so that it can be improved in the future. Now the Parliamentary Ombudsmen must examine whether it is a matter of carelessness or systematics.’ (noren_elisabeth on X)

I can't help but wonder how much more is missing from the records. Are there more important stakeholders' letters that have not been registered? I hope that those who have given their input to the National Board of Health and Welfare now take a chance to check whether all letters to the authority are registered in the records.

Maybe there is more that the Ombudsman needs to investigate while they are at it?

Below are a few longer quotes from the JO complaint:

‘The Swedish Covid Association (SCF) has been in contact with the project manager for the project (Peter Nygren) on several occasions during the project period and, in agreement with him, has sent three letters on the matter with comments on both the process for developing the knowledge support and the content of the same, see Appendix 2-4.

On 14 August 2024, the National Board of Health and Welfare presented the new knowledge support and in this, SCF is explicitly stated as one such patient association with which the authority has conducted a dialogue. 2

The final report on the government assignment also included a brief statement indicating that the National Board of Health and Welfare does not recommend a national knowledge centre, see Appendix 5. However, in light of the scope and content of the knowledge support, and the position regarding a national knowledge centre, it is clear that SCF's views have not been taken into account. An examination of the National Board of Health and Welfare's records on the matter - received on 19 December 2024 - shows that the letters submitted by SCF to the authority have not even been registered, see Appendix 6.

Despite the fact that it is stated in the National Board of Health and Welfare's own guidelines for the production of knowledge support, no consultation round was ever carried out by the authority (the detailed circumstances surrounding this are described in Appendix 8, section 2.5).

According to Head of Unit Thomas Lindén, the profession and patient organisations would instead be given the opportunity to submit comments afterwards, for a possible update. Against this background, the Swedish Covid Association submitted two letters to the National Board of Health and Welfare, in which the association provides input on the concrete content of the knowledge support (Appendix 11) and on the preparation process (Appendix 8). These letters have not been registered in the case either - despite the fact that registration of other documents has continued until 13 December 2024, see Appendix 6.

This behaviour is not only contrary to current law but also makes it difficult to review the agency's activities and ultimately constitutes a patient safety risk. SCF therefore believes that the National Board of Health and Welfare's behaviour should lead to criticism from the Ombudsman.’

‘SCF has previously pointed out a number of shortcomings in the preparation process for the production of the knowledge support in question and that it is in no way clear how the issue of a national knowledge centre was prepared, see Appendix 8. These shortcomings have largely resulted in no real patient participation and that neither the profession nor patient associations have been given insight into the process or the opportunity to submit comments during the consultation round (which in itself contradicts the authority's own guidelines, see Appendix 9 last paragraph and Appendix 10 points 7-8).

In this case, it is impossible to ignore the fact that it is the letters from the largest patient organisation (SCF), the most medically knowledgeable patients (LTL) and a doctor with long clinical experience of post-covid and ME that have been arbitrarily excluded from registration.

This, in combination with the patient safety risks that the current knowledge support entails, risks that could possibly have been mitigated if the views of these three stakeholders had been registered and taken into account, makes the behaviour particularly serious. See SCF's comments on the knowledge support - in particular section 1.2 in Annex 11 regarding the knowledge support's deviation from what the WHO has categorised as ‘red flags’.

However, the failure to diarise the documents in question does not only constitute a medical risk. The National Board of Health and Welfare's procedure also prevents independent journalistic scrutiny of the agency's work in a way that is not compatible with a society where transparency in public administration is a democratic cornerstone. All in all, the behaviour of the National Board of Health and Welfare must be considered very serious.’

Further reading:

Direct link to the complaint to the Parliamentary Ombudsmen [Covidföreningen JO-anmäler Socialstyrelsen]

Direct link to a list of registered documents up to 19/12-24 [Diary sheet, Appendix 6]

Link to Maran season 2 [Collective entry]