Sweden: Socialstyrelsen's new national guidelines for "Postcovid and other related conditions and syndromes" including ME/CFS

mango · Sep 6, 2024

Socialstyrelsen måste ändra sina felaktiga riktlinjer för ME-vården
https://rme.nu/socialstyrelsen-maste-andra-sina-felaktiga-riktlinjer-for-me-varden/

RME on Facebook auto-translate said:

The National Board of Health and Welfare must change its flawed guidelines for ME care

On Wednesday 4 September, RME sent a letter to the National Board of Health and Welfare and to the Minister of Health and Social Affairs with comments on the updated evidence base for ME and other post-infectious conditions. RME agrees with the criticism already expressed by several other concerned patient organisations. In this letter we also highlight other shortcomings. These include the fact that the severely ill, who after all make up a quarter of the patient group, are not mentioned in the guidelines.

RME, the Swedish Association for ME Patients, agrees with the criticism expressed by, among others, the Swedish Covid Association and FSI, the Association for Severely Diagnosed Infectious Diseases.

Patient representatives should have been included in the entire work process and the causes and consequences of PEM - Post-Exertional Malaise - should have been better described in the document to avoid malpractice in healthcare.

The shortcomings are so serious that the National Board of Health and Welfare needs to rethink its own guidelines for ME sufferers.

Source
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Clementine · Sep 7, 2024

mango said: ↑

Socialstyrelsen måste ändra sina felaktiga riktlinjer för ME-vården
https://rme.nu/socialstyrelsen-maste-andra-sina-felaktiga-riktlinjer-for-me-varden/
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I'm unfortunately disappointed about this. It's vague, without any references to back up their claims.

mango · Sep 9, 2024

”Allvarliga brister i nytt kunskapsstöd om ME”
https://www.dagensmedicin.se/opinion/debatt/allvarliga-brister-i-nytt-kunskapsstod-om-me/

Auto-translate said:

‘Serious shortcomings in new knowledge support on ME’

The National Association of ME Patients demands answers as to why the National Board of Health and Welfare has excluded experts in the field of ME and ignored relevant scientific literature.

The National Board of Health and Welfare's new knowledge support ‘Postcovid and other related conditions’ is deficient in terms of the knowledge base for the disease ME, which can lead to serious consequences for the individual patient.

The National Association of ME Patients is now demanding answers from the National Board of Health and Welfare - why has the agency excluded experts in the ME field and ignored relevant scientific literature? The National Board of Health and Welfare is thereby contributing to harmful care for ME patients.

Read also: National Board of Health and Welfare: How post-covid and similar conditions should be managed

Myalgic encephalomyelitis (ME, also known as ME/CFS) is a serious multi-system disease that drastically impairs the quality of life of those affected. The disease has long been stigmatised due to a lack of knowledge about its causes and treatment. At the same time, the disease has been neglected in healthcare and research. Sweden is one of the countries in Europe that stands out in the statistics on time between onset and diagnosis, with an average of 8.5 years.

For many sufferers, life is confined to the home. A significant proportion are bedridden, often for years. The disease not only causes physical limitations such as severe lack of energy, pain, muscle weakness, fever, sensory sensitivity, heart problems and gastrointestinal problems, but also a great psychological burden as the whole of life is affected.

It is estimated that at least 40 000 people in Sweden are living with ME. The vast majority fall ill in connection with an infection and there are many indications that we are now seeing a sharp increase in the number of people affected by the COVID-19 pandemic.

The lack of specialised clinics for ME patients has put great pressure on primary care to manage this complex and serious disease. At the same time, there is a lack of knowledge and training. A national knowledge support programme has therefore long been in demand. Now that the support is in place, it is very unfortunate that it lacks clear recommendations and also contains major shortcomings. Below we highlight the most serious ones and give suggestions on how the National Board of Health and Welfare can address them:

1. Graded exercise therapy is recommended despite the fact that scientific evidence shows that this produces harmful effects in ME sufferers. The risk of deterioration, which in the worst case can become chronic, is imminent when the energy account is overdrawn. This is called post-exertional malaise (PEM) and is one of the cardinal symptoms of ME. This knowledge is a must for healthcare professionals to avoid harm to the patient. The authors should distinguish between the different conditions in the evidence base and include an equally clear disclaimer as in the NICE guidelines: ‘Do not offer people with ME/CFS any treatment based on physical activity or exercise as a cure for ME/CFS’.

2. there is no description of core symptoms and how they can be counteracted. Exertion-induced deterioration, i.e. PEM, is barely mentioned, although it is a characteristic symptom of ME. We lack a description of its mechanisms and causes, as well as information on how the patient can most effectively counteract the risk of suffering from PEM with various energy-saving measures. Fatigue is another prominent and serious symptom that is also poorly explained. Fatigue is about so much more than tiredness for ME patients. It involves a lack of energy down to the cellular level, where a lack of ATP production is well documented, and can be severe enough to cause respiratory arrest, heart problems and severe neurological disorders. To avoid severe fatigue, understanding and preventing PEM is fundamental.

3. the ‘experts’ lack knowledge. The experts hired by the National Board of Health and Welfare for the assignment are only people who work in rehabilitation, which has led to a generally written support without clear guidelines. Early in the process, the working group received recommendations on a number of specialist doctors with several years of experience of ME and researchers in the ME field, but chose never to involve them.

4. relevant literature is missing. It is obvious that the authors failed to take into account important and current international literature, such as the US and UK guidelines for ME/CFS. The Swedish knowledge support is also based solely on treatment studies, a field of research that is still very limited but under development. However, research has come a long way elsewhere and a number of biological abnormalities have been identified. These include immunological, metabolic, gastrointestinal, neurological and neuroendocrine disorders in ME patients. From both a clinical and scientific point of view, it is important for healthcare professionals to have knowledge of different disease mechanisms. This not only provides understanding for the patient, but is also an important support for doctors who need to manage complex symptoms and decide how best to offer effective treatment.

When the government handed over the assignment to the National Board of Health and Welfare, the agency was encouraged to engage in dialogue with patient representatives. As this never materialised, we hope that our voice, as representatives of tens of thousands of patients, will now be heard.

Our question to the Director General of the National Board of Health and Welfare, Björn Eriksson, is therefore: Are you willing to ensure that the documentation is updated so that it does not harm ME patients?

Jenny Lundgren, President of the National Association for ME Patients (RME)

Sture Eriksson, associate professor, specialist in general internal medicine and geriatrics with a psychogeriatric profile, vice chairman of RME

Kerstin Heiling, psychologist, PhD, former President of RME
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mango · Sep 10, 2024

An opinion piece today by the Swedish Covid Association and the Swedish Association of Physiotherapists. Thank you!

”Socialstyrelsens riktlinjer medför risk för vårdskador”
https://www.dagensmedicin.se/opinion/debatt/socialstyrelsens-riktlinjer-medfor-risk-for-vardskador/

Auto-translate said:

‘The National Board of Health and Welfare's guidelines pose a risk of harm’

The knowledge support for post-covid care provides recommendations that can cause harm, write commentators from the Swedish Covid Association and the Swedish Association of Physiotherapists.

The National Board of Health and Welfare has not taken into account lessons learnt from international guidelines when developing its new guidelines for post-covid care. The knowledge gaps could have been closed if the agency had listened to professional or patient organisations. These gaps pose a risk of harm to patients.

According to the World Health Organisation (WHO), millions of people in Europe, hundreds of thousands of them in Sweden, have contracted post-covid sequelae since the start of the pandemic 4.5 years ago. Despite serious illness and severely debilitating symptoms, many are left without good care.

Read also: National Board of Health and Welfare: How postcovid and similar conditions should be managed

The field of knowledge is growing rapidly, but studies from several countries describe how doctors feel they are not getting the training and guidelines they need. The National Board of Health and Welfare's updated knowledge support on postcovid and other related conditions and syndromes was long-awaited, but it was an anticlimax.

In several places, the National Board of Health and Welfare writes that the state of knowledge is weak, when it is rather the agency's external monitoring that needs to be improved. Although post-covid is by definition a relatively new disease, the post-infectious disease ME/CFS is not.

Post-exertional malaise/symptom exacerbation (PEM/PESE) is a condition with detectable local and systemic metabolic disturbances following exercise. (1) PEM/PESE is a cardinal symptom of ME, and is also common in post-covid. (2)

Several other sub-phenomena of post-covid (e.g. postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS) and microvascular dysfunction) are already known. There is well-proven experience of effective interventions that can make a big difference for many patients. Ivabradine, antihistamines and anti-anginal drugs are examples of well-known drugs that are well tolerated by many. First, however, knowledge is needed on how to identify the conditions, which requires clear and helpful guidelines in knowledge support.

However, the project team at the National Board of Health and Welfare had a stated ambition that the knowledge support should not be too detailed and therefore several important information points are missing. There is no mention of how the presence of POTS or PEM/PESE can be assessed. Nor is there any mention of well-documented complications and sequelae, such as chronic pulmonary embolisation and new-onset autoimmune diseases (3).

The vagueness and weakness is reinforced by the frequent recommendation to ‘assess whether there is a clear cause for the symptoms’ - an obvious task for the doctor! No support is given for how the diagnosis can be sharpened, other than hints to look for a psychosomatic explanation for the symptoms. This is despite extensive existing evidence on, among other things, immunological (4) and vascular (5) explanatory models for post-infectious disease.

Guidelines from WHO and the UK NICE have been excluded as sources. As a result, the recurring recommendation in the knowledge support to offer gradually increased physical activity, without specifying how individual assessment needs to take place, is not consistent with the state of knowledge and entails the risk of serious iatrogenic harm for individuals with pronounced PEM/PESE. In doing so, the National Board of Health and Welfare is going against what the International Association of Physiotherapists and WHO, among others, point out regarding ‘red flags for safe rehabilitation’: Prior to rehabilitation, in addition to the presence of PEM, desaturation during exercise and orthostatic intolerance should be assessed, which require rehabilitation adjustments. (6) This is not mentioned in the knowledge support. Nor is there any mention of how the activity management technique of pacing, central to PEM/PESE, should be achieved.

These shortcomings could have been avoided if more professions (and patient representatives) had been involved in the development of the knowledge support, or if the opportunity for quality assurance and anchoring had been provided via the usual round of consultation. But according to the National Board of Health and Welfare, there was no time for this.

The knowledge support fails to convey the knowledge that exists and makes recommendations that may cause harm. Severe immunological symptoms risk being interpreted as psychological. As a consequence, many patients with post-infectious conditions do not have access to good and equitable care as needed.

Post-covid is one of our major public diseases. We should be able to do better than this.

Lisa Norén, specialist in general medicine, Stockholm, board member of the Swedish Covid Association

Anna Voltaire, resident psychiatrist, Stockholm

Sofia Breland, specialist in general medicine, Halmstad

Noni Wadström, specialist in neonatology, Stockholm

Ida Kåhlin, President, Swedish Association of Occupational Therapists

Cecilia Winberg, President, Swedish Association of Physiotherapists

Michael Runold, Consultant, MD, ME Allergy and Pulmonary Diseases, Unit of Pulmonary Diseases, Department of Medicine, Karolinska University Hospital

Malin Nygren-Bonnier, Respiratory Physiotherapist, Associate Professor, Karolinska Institutet, Karolinska University Hospital

Jonas Bergquist, Professor of Neurochemistry, Research Centre for ME/CFS, Uppsala University

Judith Bruchfeld, Consultant, Associate Professor, ME Infectious Diseases, Karolinska University Hospital

Philip Österberg, Resident Psychiatrist, Dalarna

Björn Fred, Specialist in General Medicine, Resident in Geriatrics, Borås

References:

1. Appelman, B., Charlton, B.T., Goulding, R.P. et al. Muscle abnormalities worsen after post-exertional malaise in long COVID. Nat Commun 15, 17 (2024).

2. Davis, H.E., McCorkell, L., Vogel, J.M. et al. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol 21, 133–146 (2023).

3. Hileman CO, Malakooti SK, Patil N, Singer NG, McComsey GA. New-onset autoimmune disease after COVID-19. Front Immunol. 2024 Feb 8;15:1337406. doi: 10.3389/fimmu.2024.1337406. PMID: 38390319; PMCID: PMC10883027.

4. Brodin, P., Casari, G., Townsend, L. et al. Studying severe long COVID to understand post-infectious disorders beyond COVID-19. Nat Med 28, 879–882 (2022).

5. Ziyad Al-Aly, Long COVID and its cardiovascular implications: a call to action, European Heart Journal, Volume 44, Issue 47, 14 December 2023, Pages 5001–5003

6. Svensson, A., Svensson-Raskh, A., Holmström, L., Hallberg, C., Bezuidenhout, L., Moulaee Conradsson, D., Ståhlberg, M., Bruchfeld, J., Fedorowski, A., & Nygren-Bonnier, M. (2024). Individually tailored exercise in patients with postural orthostatic tachycardia syndrome related to post-COVID-19 condition - a feasibility study. Scientific Reports, 14, 1-14. Article 20017.
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rvallee · Sep 10, 2024

Well ain't that something. Pretty good and direct. *Gasp* informed.

Clementine · Sep 13, 2024

On Sunday, the first episode of a new season of Maran (meaning "nightmare" or "witch") will be available. It will cover how on earth we ended up with The National Board of Health and Welfare recommending GET. It's in Swedish but the manuscript will be published and can be translated with google. More information at https://mitteremitage.wordpress.com/2024/09/12/maran-sasong-2-hur-hamnade-vi-har/ . Subscribe to Maran at https://open.spotify.com/show/0qx1zMnOUbJaKgnB4oIeSp.

mango · Sep 14, 2024

Clementine said: ↑

On Sunday, the first episode of a new season of Maran (meaning "nightmare" or "witch") will be available. It will cover how on earth we ended up with The National Board of Health and Welfare recommending GET. It's in Swedish but the manuscript will be published and can be translated with google. More information at https://mitteremitage.wordpress.com/2024/09/12/maran-sasong-2-hur-hamnade-vi-har/ . Subscribe to Maran at https://open.spotify.com/show/0qx1zMnOUbJaKgnB4oIeSp.
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I'm very much looking forward to this! Can't wait!

Everything @MittEremltage publishes is always definitely worth a read!

mango · Sep 14, 2024

Paywalled BPS opinion piece today, in one of Sweden's largest newspapers.

Hanne Kjöller: Äntligen nyktrar vården till om postcovid
https://web.archive.org/web/2024091...Pb5/antligen-nyktrar-varden-till-om-postcovid

SvD auto-translate said:

Hanne Kjöller: Healthcare finally sobering up about post-covid

As long as we turn a blind eye to the interaction between body and mind, post-covid patients will not receive the best help.
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@MittEremltage comments on this on her blog:

Vissa triumferar när risken för vårdskador ökar…
https://mitteremitage.wordpress.com/2024/09/14/vissa-triumferar-nar-risken-for-vardskador-okar/

Auto-translate said:

Some triumph when the risk of iatrogenic harm increases...

Are you angry with Kjöller today? If so, I think you should listen to Maran tomorrow ...

In case you haven't seen, she is allowed to spread her wings on the editorial page of Svenska Dagbladet today and there she triumphs over the National Board of Health and Welfare's new knowledge support for post-infectious diseases with a text entitled ‘Finally, the healthcare system is sobering up about post-covid’ (archived link to the article that does not generate clicks).

She praises the National Board of Health and Welfare's initiative to lump all diagnoses together, their call to use a biopsychosocial approach and, with the help of an anonymous post-covid doctor, accuses healthcare (and patient organisations) of a one-sided and harmful biomedical focus. Instead, patients should be helped by having fewer examinations and more of a listening doctor who understands that we are only affected by stress. And Kjöller hopes that we are heading in the same direction as Denmark:

‘Therefore, it is gratifying to read the National Board of Health and Welfare's recent knowledge support for post-covid ‘and other related conditions and syndromes’. The fact that the authority now dares to put together diseases that are derived from the same symptom pool is groundbreaking. At best, we are heading in the same direction as Denmark, where it has been recognised for 25 years that fibromyalgia, chronic fatigue syndrome and other cultural diseases are one and the same disease - not several. The new disease was named functional disorder or BDS (Bodily Distress Syndrome) and has its own diagnosis code in the Danish ICD manual. BDS clinics are now available in all regions, and they see patients with post-covid, among other conditions. There, patients receive help to manage their illness instead of yet another pointless examination that does not make them healthier. Another new feature is that the National Board of Health and Welfare states that patients should be assessed using ‘a biopsychosocial approach’. Taking into account the entire life situation instead of absurdly examining the symptomatic organs is what a few brave doctors have been arguing for a long time.’

For once, Kjöller and I have done the same analysis (of the National Board of Health and Welfare's knowledge support, see picture) but it is fair to say that we have very different feelings about what has happened.

Kjöller concludes her text by writing:

‘After thousands of studies, including 170 systematic reviews, it may seem high time to shift focus. And instead of chasing a new disease, to look back at all the old ones.’

Trying to understand the present by learning from history is exactly what Season 2 of Maran is about.

I'll see you tomorrow, right?

Image description: The image is a meme of a Trojan horse standing outside a fort. The fortress is the health service, the Trojan horse is the National Health Service's knowledge support, inside the horse are soldiers, there is the BPS lobby. The person handing over the horse to the health service is the National Board of Health and Welfare. The health service welcomes the gift with open arms.
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mango · Sep 15, 2024

Another great opinion piece by the Swedish Covid Association, thank you!

Socialstyrelsen ger farliga råd om postcovid
https://www.expressen.se/debatt/socialstyrelsen-ger-farliga-rad-om-postcovid/?ai

Auto-translate said:

National Board of Health and Welfare gives dangerous advice on post-covid

The National Board of Health and Welfare's updated knowledge support on our new widespread disease is of such low quality that patient safety is threatened.

Instead of highlighting international research and giving concrete advice to healthcare professionals, the agency is contributing with recommendations that can make many people sicker, writes the Swedish Covid Association.

OPINION. Millions of people around the world have contracted post-covid since the start of the pandemic, and many who fell ill in 2020-21 are still sick. The majority are of working age, but children and the elderly are also affected. Despite severe disabling symptoms, almost half of them say they have received hardly any help from the healthcare system, according to a survey among our members.

It was therefore important that the government commissioned the National Board of Health and Welfare to produce new knowledge support on post-covid and other post-infectious conditions. Research has made great strides, and now the healthcare system would finally have guidelines to better help this large patient group.

In addition to the suffering of sufferers and their families, international studies show that post-covid has a significant impact on the national economy. People also continue to contract covid, and the issue is therefore important for the whole population.

Unfortunately, today's extensive science is not reflected in the new evidence base. Instead, the statement that there is insufficient knowledge is repeated. However, there are over 400,000 scientific articles on covid and post-covid; most of these fly over the head of the National Board of Health and Welfare.

Despite the government's mandate, the agency and the National Board for Health and Welfare have chosen not to map out research on disease mechanisms and objective abnormalities found in many patients. There is also no mention of proven experience based knowledge of previously known common conditions.

As a result, Swedes with post-covid will continue to miss out on medicines that have been shown to relieve symptoms and improve many people's ability to work and quality of life.

Instead, there are repeated calls to look for psychological explanations. In addition, doctors are advised to prescribe physical activity, which is usually beneficial in cases of illness, without clearly explaining the considerations that must first be made.

Need to do better

This is because activity can harm the large group of post-covid patients who suffer from PEM (exertion-induced deterioration of symptoms). There is thus a risk that the guidelines will lead both to sick people missing out on symptom relief and to some people becoming even sicker.

The National Board of Health and Welfare also fails to report the latest figures on how common post-covid is. Several studies show that at least 3% of the total population is affected, and that 1.5% have severe postcovid. In other words, it is so widespread that it is considered a public health problem. However, the Agency only counts the number of people who have been diagnosed with post-covid through contact with the healthcare system, and thus only captures the tip of the iceberg. This contributes to downplaying the importance of post-covid.

Sweden must do better than this. Our social institutions cannot be allowed to make problems invisible by excluding relevant facts or presenting their own statistics that paint a false picture of the state of scientific knowledge. Hundreds of thousands of patients are waiting for help - and they have been waiting for years.

It is important that:

The National Board of Health and Welfare corrects the biggest gaps in knowledge immediately, in line with WHO recommendations, to avoid harm to patients.

Knowledge that already exists is disseminated to clinics throughout the country so that care is equitable.

The National Board of Health and Welfare is working together with patient organisations and professional associations to ensure that the healthcare system has a real opportunity to help those affected.

By Anne Wiström Chair, Swedish Covid Association
Anja L Sundberg Vice President, Swedish Covid Association
Lisa Norén Medical Specialist and Board Member, Swedish Covid Association
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mango · Sep 16, 2024

Skrivelse – SCF:s synpunkter på Socialstyrelsens kunskapsstöd
https://covidforeningen.se/skrivelse-scf-synpunkter-pa-socialstyrelsens-kunskapsstod/

Auto-translate said:

SCF's views on the National Board of Health and Welfare's knowledge support Postcovid and other related conditions and syndromes

On 16 September 2024, the Swedish Covid Association sent a letter with comments on the knowledge support to the National Board of Health and Welfare and the Ministry of Social Affairs. Read the introduction and the overall comments without sources here on the website, or download the [67 pages long] document in its entirety with sources.
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Google Translate, English.

MittEremltage · Sep 16, 2024

I've made a new thread about my new season of the podcast Maran. Socialstyrelsens new guidelines is part of this season.

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

mango · Sep 18, 2024

Goddag yxskaft! Another non sequitur from the National Board of Health and Welfare He's clearly not listening.

”Kunskapsstödet kan inte bli mer detaljerat ännu”
https://www.dagensmedicin.se/opinion/debatt/kunskapsstodet-kan-inte-bli-mer-detaljerat-annu/

Auto-translate said:

‘The knowledge support cannot be more detailed yet’

There has been an expectation that the knowledge support on post-covid would provide more detailed guidance than is possible, writes Thomas Lindén from the National Board of Health and Welfare in a response.

The National Board of Health and Welfare does not share the view of the critical commenters. The knowledge support on postcovid and other related conditions has two purposes:

1. We summarise for doctors what we currently know, and do not know, about these conditions.

2. We emphasise to healthcare professionals that even if a diagnosis cannot be established, patients should be investigated, offered symptom relief and closely monitored.

The Swedish Agency for Health Technology Assessment and Assessment of Social Services (SBU) has summarised knowledge about the treatment of the various health conditions. This summary concludes that there is insufficient evidence to recommend or advise against specific treatment measures for these specific health conditions.

The National Board of Health and Welfare also assessed the guidelines from the World Health Organisation (WHO) and the British NICE. However, it is not obvious for the National Board of Health and Welfare to directly translate such guidelines. Some recommendations are based on consensus or on weak scientific evidence, and using them can lead to errors.

‘I am sorry to hear that the contributors to the debate feel that the dialogue we have had is insufficient. We have been in contact with a number of patient organisations and consulted with a range of experts. In the field of ME/CFS, we have been in contact with both doctors and patient representatives. It is clear that there has been an expectation that the knowledge support would provide more detailed guidance than is currently possible.

One issue highlighted by the contributors concerns physical activity as a treatment measure. More research of sufficient quality is needed to advise against it. Some patients deteriorate with physical exercise, but not all. Group-level studies show that activation can be beneficial, but it should be done at a pace that works for the patient.

We therefore write ‘offer for example’ to really emphasise that an individual assessment of interventions for symptom relief must be done together with the patient.

Gradually increasing physical activity is one of several examples of interventions that can be offered for fatigue, which is a common symptom of the conditions mentioned in the knowledge support. In the same section, we also provide examples of the energy-saving techniques and strategies intervention. Not all interventions are adequate for all patients and therefore an individual assessment should always be made. Of course, it is also important to follow up and modify interventions if necessary.

One needs to keep in mind that of all those who seek care for symptoms such as fatigue, cognitive impairment, cardiac arrhythmias or any of the other symptoms we list, few have ME/CFS or any of the other conditions included in the brief. Decisions must therefore be made close to the patient, based on clinical judgement.

Until we have a better knowledge base, the support cannot be more detailed.

The expert group that the National Board of Health and Welfare has had to support the work includes expertise in general medicine, infection, rehabilitation, psychiatry and cardiology.

Thomas Lindén, Head of Department for Knowledge Management for Health Care at the National Board of Health and Welfare
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CorAnd · Sep 18, 2024

mango said: ↑

Goddag yxskaft! Another non sequitur from the National Board of Health and Welfare He's clearly not listening.

”Kunskapsstödet kan inte bli mer detaljerat ännu”
https://www.dagensmedicin.se/opinion/debatt/kunskapsstodet-kan-inte-bli-mer-detaljerat-annu/
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The article is a disgrace. I can’t believe how tone-deaf he is. He obviously hasn’t bothered to read and understand the criticism. This guy should get fired.

mango · Sep 21, 2024 at 9:15 AM

mango said: ↑

Paywalled BPS opinion piece today, in one of Sweden's largest newspapers.

Hanne Kjöller: Äntligen nyktrar vården till om postcovid
https://web.archive.org/web/2024091...Pb5/antligen-nyktrar-varden-till-om-postcovid
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Kommentar och svar om postcovid
https://www.svd.se/a/EyRg3o/kommentar-och-svar-om-postcovid

Kalliope · Sep 25, 2024 at 3:50 PM

A good writeup in English about the situation from Euractiv (don't know of them..):

New guidelines for Swedish doctors criticised for putting patients at serious risk

quote:

Lisa Norén, a general practitioner and spokesperson for the Swedish COVID-19 patient organisation, highlights the advice that doctors should encourage post-infection patients, including cardiovascular patients, to perform physical activity gradually.

“This risks harming people, as certain post-infection symptoms get worse when exercising. The recommendation seems to fail to recognise conditions such as exertional desaturation and post-exertional malaise, contradicting the recommendations made by the WHO,” she told Euractiv.

Norén is joined by Jonas Bergquist, a medical doctor and a professor in neurochemistry at Uppsala University, who leads a research centre for ME patients.

“Although this attention is positive for patients, the board is recommending ‘graded exercise therapy’, GET, despite clinical research showing that it mostly doesn’t work and could be harmful to post-infection patient groups as ME-patients,” he told Euractiv, adding that the US and UK have stopped recommending GET for this specific patient group.

https://www.euractiv.com/section/he...ticised-for-putting-patients-at-serious-risk/

mango · Sep 26, 2024 at 7:35 PM

mango said: ↑

Paywalled BPS opinion piece today, in one of Sweden's largest newspapers.

Hanne Kjöller: Äntligen nyktrar vården till om postcovid
https://web.archive.org/web/2024091...Pb5/antligen-nyktrar-varden-till-om-postcovid
Click to expand...

Kommentar: Angreppet gör oss sorgsna
https://www.svd.se/a/8q943w/nio-und...s-i-kommentar-till-hanne-kjoller-om-postcovid

Auto-translate said:

Comment: The attack makes us sad

In response to Hanne Kjöller's column ‘Finally, healthcare is sobering up about post-covid’, the following comment has been received from nine signatories at the Department of Medicine Solna, Karolinska Institutet, and Karolinska University Hospital. Hanne Kjöller responds.

As infectious disease physicians, immunologists, cardiologists, physiotherapists and others with long experience of patients with severe post-covid disease, we know that the symptoms of severe fatigue and cognitive impairment in post-covid follow the pattern that has been seen for many years after other viral diseases such as the Asian (1957), Hong Kong flu (1968), and the modern corona viruses SARS-CoV (2003) and MERS (2008). It is just that these symptoms have become both more common and more severe during the current pandemic.

A range of biological changes have been described in post-covid in terms of effects on the immune system, on hormonal systems, and on the brain, heart and lungs, including changes seen with MRI and other imaging techniques. The disease is also associated with serious chronic sequelae such as diabetes, kidney failure and rheumatic diseases. Summaries of these biological changes have recently been published in the leading medical journals The Lancet (Trisha Greenhalgh and colleagues) and Nature Medicine (Ziad Al Aly and colleagues), as well as in many other scientific papers. Some quotes from Nature Medicine: ‘Several molecular mechanisms are implicated in LongCovid (=postcovid) including residual viral infection, immunological misregulation, mitochondrial disruption, etc.’ It also refers to studies where antibodies from patients have given rise to post-covid-like symptoms when these antibodies were transferred to mice. All the studies also emphasise that postcovid is not a homogeneous disease and that different explanatory mechanisms are likely to be involved in different subgroups of patients.

Using this knowledge, which is available to anyone who wants to read scientific literature, to claim that none of the disease and its subgroups have a biological background is pure science denial. Research and statistics also clearly show - contrary to what Kjöller claims - how post-covid strikes broadly across ages, genders and social classes. Female gender, like many immune diseases, is a risk factor that, according to a recent study by Swedish researchers, can be explained by hormonal differences between women and men. The US CDC monitors the prevalence of the disease in real time and can show how socioeconomically vulnerable groups are affected to a greater extent. So we, the authors of this response, argue that post-covid is a serious disease where affected patients should be taken seriously, where specialised clinics should be supported so that research can lead to better understanding and therapy.

We are saddened that these attacks on already affected individuals are given such a prominent place in Svenska Dagbladet in contrast to how the disease is treated in other leading newspapers in the world which instead describe the science behind the disease and its implications for health care, the economy and for the affected individuals.

Judith Bruchfeld, Consultant and Associate Professor, ME Infectious Diseases, Karolinska University Hospital and Division of Infectious Diseases, Department of Medicine Solna, Karolinska Institutet

Artur Fedorowski, Consultant and Professor, ME Cardiology, Karolinska University Hospital and Division of Cardiology, Department of Medicine Solna, Karolinska Institutet

Per Julin, Senior Consultant and MD, Specialist in Medical Rehabilitation, Department of Post-Infectious Diseases, Karolinska University Hospital

Lars Klareskog, Professor, Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet

Christer Lidman, Senior Consultant and Associate Professor, Medical Director of the Centre for Post-Infectious Diseases, Karolinska University Hospital

Malin Nygren-Bonnier, Specialist Physiotherapist and Associate Professor at the Department of Physiotherapy Karolinska Institutet and ME Health Professions, Karolinska University Hospital

Michael Runold, Consultant and MD, ME Pulmonary Diseases, Karolinska University Hospital and Division of Pulmonary Medicine, Department of Medicine Solna, Karolinska Institutet

Marcus Ståhlberg, Head of Operations and Associate Professor, ME Cardiology, Karolinska University Hospital and Division of Cardiology, Department of Medicine Solna, Karolinska Institutet.

Åsa Wheelock, Pharmacologist and Associate Professor, Head of the Division of Pulmonary Medicine, Department of Medicine Solna, Karolinska Institutet
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Auto-translate said:

Hanne Kjöller replies: If you are going to criticise my use of the term cultural disease, it might be a good idea to find out what it means. You are contrasting cultural illness with medical explanations, which shows that you have skipped that step.

So let me start by quoting the originator of the concept, Karin Johannisson: ‘The concept of cultural disease does not take a position on whether or not a condition can be demonstrated by biomedical markers, but focuses on the mechanisms of spread and internalisation: i.e. why and how a particular disease picture is established, legitimised and portrayed in a particular time.’ This does not mean, Johannisson continues in an article more than 15 years old in Läkartidningen , ‘that disease is not “real”, but rather illustrates that disease can rarely be isolated as a “pure” phenomenon’.

It has been known for a long time that you can get prolonged symptoms after viral illness. You yourselves go back to the Asians of the 1950s. So the question is not whether you can get symptoms after COVID-19, but whether it is a ‘separate’ disease from the post-viral diagnosis code that already exists. And how much of the sometimes perennial symptoms are functional.

One of the signatories, Marcus Ståhlberg, was an expert in the SBU systematic review published last month. Therefore, I assume that he, and perhaps the other signatories, are aware that there are several - and large - studies showing that the symptoms of post-covid disease are highly prevalent in the community at large, even among people who have not had covid. A huge registry study in France showed that all symptoms, with the exception of impaired sense of smell, were more common in the group who had not had COVID but thought they had - compared to the group where blood tests showed they had the infection.

Finally: The team at Karolinska in Solna seems increasingly odd and separate in a healthcare Sweden that has increasingly switched to a holistic approach. So it's not really me you're arguing against. It's large parts of healthcare Sweden. And Denmark.
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rvallee · Sep 26, 2024 at 10:40 PM

Kalliope said: ↑

“Although this attention is positive for patients, the board is recommending ‘graded exercise therapy’, GET, despite clinical research showing that it mostly doesn’t work and could be harmful to post-infection patient groups as ME-patients,” he told Euractiv, adding that the US and UK have stopped recommending GET for this specific patient group.
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Medical attention from a biopsychosocial perspective is never positive for patients. Never. It is not meant to provide benefits for patients. It is meant to provide benefits, comfort mostly, to physicians, to increase private profits for insurers, and to create the illusion of savings for government agencies who simply ignore externalities by never doing a proper count.

A great example of that. As they stand, those guidelines will harm far more than they will help. That is not positive for patients. And that isn't even the goal. It just never is, no matter what they tell themselves.

rvallee · Sep 26, 2024 at 10:42 PM

Impressive load of bullshit from Kjöller. The lies. The damn lies!

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Sweden: Socialstyrelsen's new national guidelines for "Postcovid and other related conditions and syndromes" including ME/CFS

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