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

The National Board of Health and Welfare in Sweden is under fire for its new guidance on how to treat patients with long-covid or other post-infection syndromes. Critics say these could put patients at serious risk.

In 2023, the Swedish government asked the National Board of Health and Welfare (Socialstyrelsen) to renew its guidance on how to diagnose, treat and rehabilitate people suffering from long-COVID and closely related post-infection conditions – such as post-flu, post-sepsis, post-intensive-care-syndrome (PICS), myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS).

The aim was to present an up-to-date “knowledge support” to improve diagnostics, treatment and rehabilitation of these patients.

“We primarily reach out to those who meet patients in primary care, but also in specialised care or social services. You will be supported in choosing appropriate interventions for different symptoms,” the board says in the guidance, published on 14 August.

Since then, it has been criticised strongly. Several of its recommendations mainly focused on physical exercise.

Red flags

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.

The WHO has also raised a red flag, strongly recommending doctors to check for possible desaturation and heart disease before telling post-infection patients to do physical exercise.

Insufficient evidence against exercise, Board claims

Yet, Thomas Lindén, the Swedish board’s Chief Medical Officer, defends the advice to encourage gradual physical activity, saying to  Swedish radio: “There has not been sufficient evidence to recommend abstaining from physical activity at group level.”

In their recommendations, the board also states that there is “no evidence-based way to investigate, treat and rehabilitate people with post-infection conditions”.

“This knowledge support is an update of where we are now in terms of knowledge in post-covid and other post-infectious conditions. It is not a clinical guideline,” Sofia von Malortie, head of the Department for National Guidelines and Screening at the board, told Euractiv.

“More research is needed, for example, to advise against physical exercise,” she remarked, adding that “Some patients get worse from physical activity, but not all. There is evidence of activation on a group level, but this must be done at a pace that works for the patient.”

Asked by Euractiv why, despite the government’s assignment to improve, for example, diagnostics, there are no concrete recommendations on how doctors may diagnose, for instance, long-COVID patients, von Malortie replied that: “Recommendations should provide good support for decisions and recommendations based on an inadequate basis risk leading astray.”

Adding that “In this context, it is particularly important that clinicians follow the patients closely and adjust the treatment if needed.”

Vague guidelines

Several specialists within the medical field, such as Judith Bruchfeld, a well-known Swedish infectious disease specialist at the Karolinska University Hospital, call the new guidelines vague and believe it will not provide good support.

“It is remarkable that there is nothing in the guidelines on how to diagnose postural orthostatic tachycardia syndrome, POTS, or a patient with dyspnea, which point to possible underlying causes such as chronic pulmonary embolism, hypoxia due to impaired gas exchange in the lung or dysfunctional breathing patterns, which can occur as long-term complications in post-COVID,” she explained to Euractiv.

“This means that it may be difficult for doctors in primary care to diagnose serious complications and decide on the best interventions, including the need for referrals to secondary and tertiary care,” she added.

Best practice

According to Bruchfeld, Norén and Bergquist, the state of knowledge regarding persisting post-infection conditions has greatly improved in recent years.

“There is a significant lack of research for the post-infection group, but we also see evidence, for example, of disturbed metabolism, patterns of neuroinflammation and also impaired energy production in the mitochondria,” Jonas Bergquist told Euractiv.

When strong evidence for interventions is missing, doctors in clinical care will have to rely on proven experience, best practice and the latest research, the specialists say. They now think an update of the guidelines is necessary.

But that will not happen for the time being, Sofia von Malortie told Euractiv, adding that they "will continue to monitor the state of research.”

The COVID-19 Association will take the discussion to the political level when it meets with Miriam Söderström, State Secretary to Health Minister Acko Ankarberg Johansson, within the coming weeks.

[Edited by Vasiliki Angouridi, Brian Maguire | Euractiv’s Advocacy Lab]