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

[mango]

Socialstyrelsen, Sweden's National Board of Health and Welfare, published national guidelines for post covid, post influenza, post sepsis, post intensive care syndrome, ME/CFS and PANS/PANDAS today.

As many of you already know, there were no national guidelines for ME in Sweden, so this is pretty big news. And it's not looking good at all

The guidelines are in the form called "kunskapsstöd" (literally "knowledge support"), a kind of state of the knowledge report.

Link to the report (.pdf, 48 pages, in Swedish):

Postcovid och andra närliggande tillstånd och syndrom
https://www.socialstyrelsen.se/glob...t/artikelkatalog/kunskapsstod/2024-8-9183.pdf

 

[mango]

Auto-translated from the report:

"Postcovid and other related conditions and syndromes

Executive summary

This knowledge support covers post-covid, post-influenza, post-sepsis, post-intensive care syndrome, chronic fatigue syndrome (ME/CFS) and paediatric acute-onset neuropsychiatric syndrome (PANS/PANDAS). It is primarily aimed at those who meet patients in primary care, but also in specialised care or in social services. You will be supported in choosing appropriate interventions for different symptoms.

Weak knowledge today and a continued extensive need for knowledge

There are few relevant and well-conducted treatment studies for the conditions in question, and the majority of those that do exist concern post-covid. Only a few studies have been found for interventions for the other conditions.

The state of knowledge for post-covid is developing favourably, and new research on treatment and rehabilitation interventions is constantly being added. However, this does not apply to the same extent to the other conditions in the knowledge support: post-influenza, post-sepsis, post-intensive care syndrome, ME/CFS and PANS/PANDAS. Common to all conditions, including post-covid, is that there is still a significant knowledge gap.

Offer symptom relief

Many of the clinical symptoms of the conditions in question overlap, but although there is currently insufficient knowledge of the underlying mechanisms or evidence-based treatment for a diagnosis, the patients' symptoms are well recognised in healthcare. Therefore, thanks to the experience of caring for patients with similar symptoms, there is often good symptom relief to offer them.

When the cause of the condition is not clear or when there is no targeted evidence-based treatment, it is important to focus instead on providing symptom relief as far as possible and on compensating for the symptoms with different strategies and assistive devices, to promote activity and participation.

Within these conditions, there is a very wide variation in the severity of symptoms and functional impact. Individualised and person-centred assessment is therefore of great importance.

The underlying mechanisms are unclear

The conditions included in this knowledge support differ in several respects, but have in common that they are not medically or scientifically clear-cut. For some of them, the link to previous infection is unclear, i.e. it cannot be said with certainty that they are post-infectious as the causes of the conditions are not clear. There is also no evidence-based approach to the assessment, treatment and rehabilitation of patients with these conditions."

 

[mango]

News article by the National Board of Health and Welfare (in Swedish)
https://www.socialstyrelsen.se/om-s...ess/sa-far-patienter-med-postcovid-bast-vard/

How patients with post-covid get the best care

Published: 2024-08-14 at 10:00

There is still insufficient knowledge about how patients with different manifestations of postcovid should best be treated and rehabilitated. But they should be offered assessment, treatment and rehabilitation for their symptoms. This is the opinion of the National Board of Health and Welfare in a new knowledge support for how healthcare can best help patients with postcovid and other similar conditions.

The knowledge base for post-covid is improving. New research on treatment and rehabilitation is constantly being added. At the same time, the Swedish Agency for Health Technology Assessment and Assessment of Social Services (SBU) has summarised current knowledge about interventions for post-covid and some other post-viral health conditions. The summary shows that there is still a lack of sufficient knowledge about both the causes of the condition and evidence-based treatment.

- However, the symptoms of these patients are already well known within the healthcare system, and for several of the symptoms there is often good symptom relief to offer the patients,’ says Thomas Lindén, Head of Department at the National Board of Health and Welfare.
Primarily handled by primary care

It is to the health centres around the country that the vast majority of people who have undergone a covid infection and who have persistent symptoms turn. The new knowledge support is therefore primarily aimed at those who work in primary care, but also at specialised healthcare and social services.

- ‘Primary care should be the hub, which sees the whole picture and coordinates with the necessary specialised care and other interventions,’ says Thomas Lindén.

According to the National Board of Health and Welfare, children in particular may need to be assessed by specialised care, as long-term problems following the illness can affect school attendance and participation in social activities. In such cases, it is important that school health services and schools work together to draw up a joint rehabilitation plan.

- It is important to investigate, alleviate symptoms and provide support, even if the cause of the long-term symptoms of COVID-19 is not always clear. Healthcare providers need to make an individual assessment that also takes into account the patient's previous medical history. It is often a puzzle that needs to be put together,’ says Thomas Lindén.
Symptoms already known

There are many symptoms that have been described before. They may include headaches, loss of smell and taste, dizziness, fatigue, psychological symptoms or difficulty sleeping. Many of the symptoms are common to post-covid and the other related conditions also described in the evidence base. The evidence base supports the assessment and possible interventions for these symptoms.

- This may involve medical interventions, but also support for returning to work or school, the different types of follow-up that should be offered and how best - and gradually - to get back to everyday life again,’ says Thomas Lindén.

Challenge to clarify underlying causes

The National Board of Health and Welfare thus recognises that there is currently a lack of complete knowledge about the underlying causes of post-covid and also about evidence-based treatment. However, even if the link between a particular condition and infection cannot be demonstrated today, it cannot be ruled out either. The Agency believes that more research and more knowledge are still needed. University hospitals and regions still have a responsibility in this regard and need to cooperate within the country but also with researchers in other countries. At EU level, there is also a network that deals with these issues.

- We hope and believe that knowledge about post-covid and other post-infectious conditions will continue to develop. We will monitor developments and continuously review and, if necessary, update the knowledge support to health services,’ says Mr Lindén.

 

[mango]

More from the report:

ME/CFS

ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is characterised by severe fatigue and exercise intolerance, which is often present and where sufferers do not find rest or sleep help. In addition to fatigue, there are other symptoms. These include neurological symptoms, cognitive difficulties, muscle and joint pain, flu-like symptoms and orthostatic intolerance.

Over the last few decades, many studies have been conducted on its cause. The hypotheses that have been investigated mostly concern infection-induced causes, immune dysfunction, sleep disorders, endocrine
metabolic dysfunction and neuropsychiatric factors [33]. None of these hypotheses have been confirmed and no causal relationship has been established. The cause of ME/CFS thus remains unknown.

There are no biomarkers or other objective diagnostic tests. There has been a move towards using more specific diagnostic criteria, such as Canada criteria, which include exertional deterioration, PEM, as a
cardinal symptom. The diagnostic criteria applied do not require a verified or suspected past and potentially triggering infection.

There are no reliable figures on prevalence and prognosis. Many people diagnosed with ME/CFS have some degree of disability that disability that can last for many years.

 

[mango]

RME, the Swedish ME Association, has previously been involved in developing these guidelines. They published a short news article on their blog today.

 

[mango]

More from the report:

PEM (post exertional malaise) occurs in both post-covid and ME/CFS and is triggered by physical, mental or emotional overload. It is associated with extreme fatigue, usually the next day, with a return of previous symptoms, such as flu-like symptoms, palpitations and headaches.

 

[mango]

More from the report:

Offer rehabilitation

After a more severe illness involving inactivity or bed rest, people lose fitness very quickly and it takes time to build it up again. Muscle strength and endurance are also affected. Reduced fitness and muscle function lead to fatigue even in everyday activities. This affects the patient's overall functioning and life situation. In addition, loss of muscle strength and balance can increase the risk of falls and fall-related injuries.

Treatment and rehabilitation need to be based on the patient's individual level of function and activity and work gradually to increase this. Improving muscle function and fitness can also improve psychological well-being. Sometimes there is also a concern that increased activity will worsen the symptom, which is why it is important to both pedagogically explain the purpose of increasing activity, but also plan appropriate steps for this with the patient. It is common for patients to want more than their body can handle. You need to work to achieve a balance in activities so that you can cope and also have a little energy left over for things that can give a golden edge to life.

In the case of more pronounced symptoms or disability, an individual treatment and rehabilitation plan may need to be drawn up together with the patient. The plan needs to follow the patient throughout the care process and be revised as needed.

 

[mango]

More from the report, on cardiovascular symptoms:

[...] Symptoms such as breathlessness, reduced fitness, chest tightness, severe palpitations and a drop in blood pressure on standing up may sometimes be due to a dysfunction of the autonomic nervous system, such as postural orthostatic tachycardia syndrome (POTS) or inappropriate sinus tachycardia (IST) [2-4].

Other typical symptoms of POTS include nausea, blurred vision, headache and fatigue. POTS is rare but has been recognised in connection with post-covid.

Although symptoms such as palpitations are also common in conditions such as anxiety, panic disorder and anxiety, it is important to consider the possible presence of autonomic dysfunction (POTS or IST), cardiac arrhythmia or other cardiac disease before making the psychosomatic diagnosis.

Studies have shown that POTS and IST are more common in more severe, longer-lasting, post-covid and may co-occur, and that the symptoms between post-covid and especially POTS are partly overlapping [4]. In more severe cases, care may need to be provided by a multi-professional team, including a cardiologist who ideally has experience in the treatment of cardiovascular dysautonomia.

Cardiovascular: Assess
- whether there is a clear cause of the cardiovascular symptoms
- the patient's ability to function in everyday life, including work, school and leisure
- whether the patient has chest pain, a feeling of heart rhythm disturbances (arrhythmias), palpitations (tachycardia) or abnormal blood pressure (lying, sitting or standing)
- the patient's functional physical capacity
- whether the patient needs an extended cardiac work-up
- whether the symptoms may be due to, for example, anxiety or panic disorder.

Cardiovascular: Offer, for example
- support for return to work, school and leisure activities
- follow-up based on the severity of cardiovascular symptoms
- gradual increase in physical activity, taking into account individual factors
- referral to a cardiologist for targeted treatment of cardiac symptoms, or further specialised investigation with appropriate modalities.

 

[Sean]

Therefore, thanks to the experience of caring for patients with similar symptoms, there is often good symptom relief to offer them.

News to me.

Individualised and person-centred assessment is therefore of great importance.

Meaningless nonsense.

There is also no evidence-based approach to the assessment, treatment and rehabilitation of patients with these conditions.

Yet, they then state:

Treatment and rehabilitation need to be based on the patient's individual level of function and activity and work gradually to increase this. Improving muscle function and fitness can also improve psychological well-being. Sometimes there is also a concern that increased activity will worsen the symptom, which is why it is important to both pedagogically explain the purpose of increasing activity, but also plan appropriate steps for this with the patient.

Nothing has changed.

The BPS mentality still rules the roost.

 

[RedFox]

Sometimes there is also a concern that increased activity will worsen the symptom, which is why it is important to both pedagogically explain the purpose of increasing activity, but also plan appropriate steps for this with the patient. It is common for patients to want more than their body can handle.

The old "You're simultaneously a mentally frail malinger and an overachieving perfectionist"

 

[CorAnd]

I felt gutted reading the new guidelines yesterday. So much so that I hardly slept last night.

These guidelines are used by doctors all over the country, and the National Insurance Company loves to cherry-pick quotes from them when they deny disability.

There are many problems with the text, but the chief among them is that the authors state that ”tiredness” can be treated with ”gradually increased activity.”

First of all, what I feel is not ”tiredness”, that word is a gross missrepresentation. What I feel is a complete lack of energy, an exhaustion that is so deep it actually hurts physically. It is trivial and inaccurate to characterize my symptom as ”tiredness”.

Second of all, the guidelines contradict themselves. On the very first page it is stated that the causes of Post Covid and related illnesses (ME/CFS included) are unknown. Later on they say you can treat ”tiredness” in these diseases with ”gradually increased activity”.

Isn’t that illogical? They say the don’t know the causes, but they are confident in regards to treatment, despite the lived experience of so many patients who repeatedly point out that GET leads to deterioration. I, myself, went from mild to severe after intense GET under the supervision of a physiotherapist.

 

[rvallee]

Looks like a huge mess to me. Just treat symptoms. How? Just do it.

there is often good symptom relief to offer them

when there is no targeted evidence-based treatment, it is important to focus instead on providing symptom relief as far as possible and on compensating for the symptoms with different strategies and assistive devices, to promote activity and participation

The evidence base supports the assessment and possible interventions for these symptoms

There is also no evidence-based approach to the assessment, treatment and rehabilitation of patients with these conditions

However, the symptoms of these patients are already well known within the healthcare system, and for several of the symptoms there is often good symptom relief to offer the patients

We've always been at war with East Asia. East Asia does not exist. East Asia is a crucial ally in our war with West Asia. The combined forces of East and West Asia have been crushed. Asia has never existed.

Sometimes there is also a concern that increased activity will worsen the symptom, which is why it is important to both pedagogically explain the purpose of increasing activity, but also plan appropriate steps for this with the patient

They don't have a damn clue and aren't paying attention to anything. Still trying to find magical explanations that will simply overrule the damn universe.

They're still insisting that all you need to do is rehabilitation, and if rehabilitation doesn't work, then you need more rehabilitation, with more magical hopium or whatever. Rolling up your sleeves doesn't work? Roll them up higher!

In the case of more pronounced symptoms or disability, an individual treatment and rehabilitation plan may need to be drawn up together with the patient. The plan needs to follow the patient throughout the care process and be revised as needed.

Good grief. They trapped themselves in a bind based on magical fairy dust and can't admit it, so they generally just make stuff up hoping that no one will notice or care. They're basically trying to trickle in some bits of truth while changing nothing. Ugh.

Things are generally looking like the worst of both worlds: the are begrudgingly dragged kicking and screaming into admitting that what they have insisted for decades is bullshit that doesn't exist may, perhaps, be a problem but just follow the same steps that never worked, as before, and it'll all be fine. There are good bits, but they are immediately overruled by the traditional nonsense.

 

[rvallee]

The old "You're simultaneously a mentally frail malinger and an overachieving perfectionist"

Simultaneously too tall and too short. Average height? Way too average, that's the danger zone. No one finds any problem with any of that BS. Absurd.

 

[hibiscuswahine]

Reduced fitness and muscle function lead to fatigue even in everyday activities.

That is incorrect. (well most is incorrect but this is just a small sampling of the rubbish)

So did the Swedish ME association provide information and then it was completely reworked by the people doing the guideline? How disappointing for pwME and LC and the potential harm.

 

[Nightsong]

I generated an English PDF with DeepL and had a very brief skim.

From the physical exercise section:

Overall, according to the authors, the studies show some effects in favour of the intervention and SBU has not noted any reports of negative effects.

This is just absurd, as there are reports of negative effects from physical exercise in the literature. In fact I think even some of the psychosomaticians acknowledge that.

In the "offer rehabilitation" section, there's no mention of PEM at all, or any acknowledgement that ME/CFS patients can't be rehabilitated out of it.

There doesn't seem to be any acknowledgement in the social services section of just how severe ME/CFS can become:

medical certificate or doctor's statement may then be a relevant basis for the social services, together with the individual, to be able to plan measures for a return to or entry into the labour market. The medical report must then focus primarily on the person's ability to work or participate in work-promoting measures and not just state that the individual has a particular illness. If a person's inability to work is not considered to be temporary, the social services may need information about what medical rehabilitation the doctor is planning and the timetable for this.

This is a poor description of PEM:

PEM (post exertional malaise) occurs in both post-covid and ME/CFS and is triggered by physical, mental or emotional overload. This is associated with extreme tiredness usually the next day with the return of previous symptoms, such as flu-like symptoms, palpitations and headaches.

The list of what to offer for fatigue:

Fatigue: Offer, for example
• treating causes of fatigue, such as depression, sadness, sleep problems, respiratory problems, pain or cognitive difficulties (see specific sections), anaemia or hypothyroidism
• support for returning to work, school and leisure activities
• energy-saving techniques and strategies to reduce the feeling of physical and mental fatigue
• gradually increasing physical activity, taking into account individual factors
• structured evaluation of the actions carried out.

I'm also not sure that PANS/PANDAS should be regarded as a discrete syndrome; last time I looked into this I thought the evidence for it was lacking.

There are some interesting statistics in the report, both for post-COVID:

In 2023, 3,177 patients with a post-COVID diagnosis were treated with a total of 8,105 care contacts in specialised outpatient and inpatient care.

In February 2022, the National Board of Health and Welfare presented statistics on patients diagnosed with post-covid during the period October 2020 to October 2021. On that particular occasion, primary care was also included following a special collection of statistics from all the country's regions. The data on specialised outpatient and inpatient care was collected from the National Board of Health and Welfare's patient register.

During the study period, 16 019 patients were diagnosed with postcovid in public primary care and 5 710 patients in specialised care. The number of healthcare contacts in which the diagnosis of postcovid was recorded increased steadily since the diagnosis was introduced in mid-October 2020, reaching a peak in May 2021. In total, during the study period, public primary healthcare recorded 24 798 doctor visits for patients with a postcovid diagnosis. The corresponding figure for specialised care was 9,246 care contacts. More information can be found in the fact sheet

and for ME/CFS:

In total, 3 051 unique patients with the diagnosis code G93.3 have been treated with a total of 7 746 care contacts in specialised care during 2023. This includes both those who have the diagnosis code as their main diagnosis and those who have it as a secondary diagnosis

 

[bobbler]

Reduced fitness and muscle function lead to fatigue even in everyday activities.

That is incorrect. (well most is incorrect but this is just a small sampling of the rubbish)

So did the Swedish ME association provide information and then it was completely reworked by the people doing the guideline? How disappointing for pwME and LC and the potential harm.

I’d be interested in this too

along with whether Cochrane / larun has been referenced anywhere ?

 

[mango]

Interaktiv karta Insatser vid postcovid och andra närliggande tillstånd och syndrom
Den interaktiva kartan är baserad på rapporten Insatser vid postcovid och andra närliggande tillstånd och syndrom – en kartläggning

https://www.sbu.se/fullpagetablevie...llstånd och syndrom – en kartläggning&lang=sv

Interactive map Interventions for post-covid and other related conditions and syndromes

The interactive map is based on the report Interventions for post-covid and other related conditions and syndromes - a mapping exercise

The number in the symbol indicates the number of publications. The same publication may appear in several places. Click on the symbols to see details of the publications and links. You can filter which publications are displayed by making selections in the filter boxes above the map.

 

[Dolphin]

Auto-translated from the report:

"Postcovid and other related conditions and syndromes

Executive summary

This knowledge support covers post-covid, post-influenza, post-sepsis, post-intensive care syndrome, chronic fatigue syndrome (ME/CFS) and paediatric acute-onset neuropsychiatric syndrome (PANS/PANDAS). It is primarily aimed at those who meet patients in primary care, but also in specialised care or in social services. You will be supported in choosing appropriate interventions for different symptoms.

Weak knowledge today and a continued extensive need for knowledge

There are few relevant and well-conducted treatment studies for the conditions in question, and the majority of those that do exist concern post-covid. Only a few studies have been found for interventions for the other conditions.

The state of knowledge for post-covid is developing favourably, and new research on treatment and rehabilitation interventions is constantly being added. However, this does not apply to the same extent to the other conditions in the knowledge support: post-influenza, post-sepsis, post-intensive care syndrome, ME/CFS and PANS/PANDAS. Common to all conditions, including post-covid, is that there is still a significant knowledge gap.

Offer symptom relief

Many of the clinical symptoms of the conditions in question overlap, but although there is currently insufficient knowledge of the underlying mechanisms or evidence-based treatment for a diagnosis, the patients' symptoms are well recognised in healthcare. Therefore, thanks to the experience of caring for patients with similar symptoms, there is often good symptom relief to offer them.

When the cause of the condition is not clear or when there is no targeted evidence-based treatment, it is important to focus instead on providing symptom relief as far as possible and on compensating for the symptoms with different strategies and assistive devices, to promote activity and participation.

Within these conditions, there is a very wide variation in the severity of symptoms and functional impact. Individualised and person-centred assessment is therefore of great importance.

The underlying mechanisms are unclear

The conditions included in this knowledge support differ in several respects, but have in common that they are not medically or scientifically clear-cut. For some of them, the link to previous infection is unclear, i.e. it cannot be said with certainty that they are post-infectious as the causes of the conditions are not clear. There is also no evidence-based approach to the assessment, treatment and rehabilitation of patients with these conditions."

Automatic translation of whole pdf

 

[mango]

Paywalled news article in Dagens Medicin, a news website for healthcare professionals.

Socialstyrelsen: Så bör postcovid och liknande tillstånd hanteras
"Kunskapsläget är fortfarande skralt, men Socialstyrelsen lyfter vikten av symtomlindrande behandling så långt det är möjligt vid postcovid och fem närliggande tillstånd. Kunskapsstödet riktar sig främst till primärvården."
https://www.dagensmedicin.se/specia...or-postcovid-och-liknande-tillstand-hanteras/

National Board of Health and Welfare: How to manage postcovid and related conditions

The state of knowledge is still poor, but the National Board of Health and Welfare emphasises the importance of symptom-relieving treatment as far as possible for postcovid and five related conditions. The knowledge support is primarily aimed at primary care.

 

[MittEremltage]

I can't see that this has been shared. It is Swedish Agency for Health Technology Assessment and Assessment of Social Services (Statens beredning för medicinsk och social utvärdering, SBU) that have compiled the scientific basis on which the National Board of Health and Welfare bases its report.

”SBU has mapped what research is available on the effects of treatments and rehabilitation efforts in post-covid and other related conditions and syndromes: ME/CFS chronic fatigue syndrome, Pediatric Acute-onset Neuropsychiatric Syndrome (PANS/PANDAS), long-term problems after sepsis and influenza and in the condition Postural orthostatic tachycardia syndrome (POTS). The report describes the systematic reviews and primary studies that have been included.”

Via Google translate:
https://www-sbu-se.translate.goog/s...l=auto&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp