‘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.
