
FAQ
What is your opinion on the risk of Covid triggering rheumatic autoimmune diseases such as Sjögren's or Lupus ? Would you agree that there is a overlap in symptoms of Long Covid and such diseases as Lupus and Sjögren's ?
It is not yet clear if SARS-CoV-2 triggers autoimmune diseases, however it is one of the potential hypotheses explaining the condition. To date, there are no immunomodulators or immunosuppressors used in the treatment of long COVID, however these are being studied among other molecules in randomized controlled trials.
Same with POTS and MCAS
Long COVID has been associated with POTS, there is less evidence to date of its association with MCAS, however studies are underway to understand the potential underlying mechanisms.
Is it still correct to exclude "Long Covid" diagnosis because there was no PCR test positive? I've read otherwise (ie. Pr Salmon Ceron). Could you give the arguments why people with actual Covid infection don't always test positive on PCR ?
The WHO definition of long COVID applies if there is a documented or suspected SARS-CoV-2 infection.
Are there any research on the topic of telemedicine for long covid/ or any ways to encourage development of telemedicine + social work distance support solutions for patients ?
There are no studies to date about this mode of working, with potentially pros and cons especially in the management of daily energy, however increasing the risk of isolation.
A recognized medical treatment of long covid has not been validated to date, and in consequence many affected patients have turned to alternative medicine for help. Are you aware of any studies evaluating such alternative therapies for long Covid ?
Although it is less possible to do randomized controlled trials for complementary therapies, they are currently used in practice and seem to provide some subjective benefits for patients. A list of resources and videos showing how to perform some of these therapies, including guided meditation and hypnosis are available on www.rafael-postcovid.ch
Just a remark : Guidelines must also be established for social insurance coverage... the pauperization of patients who lose everything
There has been a lot of effort by the Swiss Insurance Medicine group to provide guidelines on the diagnosis and follow-up of post-COVID condition. The evaluation by the disability insurance remains on a case by case basis.
Which opportunities ie with WHO or other significant health authorities to increase information to the public and training for health professionnals asap ?
Continuation of the question : Denial plays a role but lack of adequate information on official channels is urgently needed! French public health official authorities and channels of information not even up to date yet!
Answer : Increasing awareness and patient advocacy have been some of our main goals, resulting in the creation of the RAFAEL platform and the national recommendations for primary care physicians.
Could you inform us which countries in the world legally recognize Long Covid as a cause of absence from work and also offer economic protection ? In which countries has Long Covid already been recognized as a disability ?
The evaluation of disability is on a case by case basis and depends on the degree of functional incapacity. This is true for Long COVID as much as it is true for other diseases, at least in Switzerland.
This has been a really interesting overview of Long Covid in Switzerland. However, can we hear a bit more about how these proposals are being made by general practitioners/general medicine and through Long Covid clinics ?
Continuation of the question : Much has been covered here as proposed ways of managing symptoms that are not seeming to reach patients as concrete proposals.
Answer : Most of the information for Switzerland is found on the RAFAEL platform.
Which other tools to diagnose post exertional malaise (apart from De Paul Questionnaire) ?
Clinical tests including a 10 minutes Schellong test or tilt test are ways to diagnose post-exertional malaise, although risking a reproduction of symptoms and discomfort for the patient. Careful history taking is a main part of diagnosis post-exertional malaise.
Do you have statistics of how many patients of LC you have over time ?
The long COVID consultation at the Geneva University Hospitals has followed more than 2000 patients over time, with requests for new consultations still coming.
Do you think that medications for Lupus such as Interferon alpha Inhibitor could work / be tested for Long Covid ?
It is not yet clear if SARS-CoV-2 triggers autoimmune diseases, however it is one of the potential hypotheses explaining the condition. To date, there are no immunomodulators or immunosuppressors used in the treatment of long COVID, however these are being studied among other molecules in randomized controlled trials.
We don't have any authorized medicines today, but I don't understand if research is ongoing. And if so, how long do we think it will take to have these medicines ?
Research and randomized controlled trials are underway, with first results expected by the end of 2024.
Many thanks for your talk and for sharing this very clear evidence here in Switzerland. Could you also speak about use of treatments to address ongoing symptoms, e.g.meds such as metformin or LDN ?
Research and randomized controlled trials are underway, these medications are not used in practice before obtaining research and scientific results.
What are the biomarkers at the moment that, although there is still no certainty, there is a high probability that they can help diagnose Long Covid ?
Continuation of the question : A European Union study had begun on Herv - w: https://cordis.europa.eu/project/id/101057302/it. Is there any news on these studies?
Answer : To date, there are no biomarkers available on the market. Several studies are underway to try to identify biomarkers for long COVID.
@Dr Mayssam Nehme: is there a way for patients to be informed of ongoing/upcoming clinical trial ?
All results will be published publicly and in scientific journals once available.
What are the effects that a covid infection can have, even in the long term, on CD4 and CD8 lymphocytes ?
It is not clear to date what long term effect SARS-CoV-2 infectio ncan have on CD4 and CD8 lymphocytes, however studies are underway.
Same question as above but with Narcolepsy ?
It is not yet clear if SARS-CoV-2 triggers narcolepsy although hypersomnia and sleep disorders are some of the symptoms seen in this condition.
Among people who suffer from Long Covid, what percentage of people have suffered from it for over a year ?
Although a majority of patients have their symptoms improve in the first 6-12 months, a proportion of individuals (1.1% of those infected by SARS-CoV-2), continue to have long term symptoms for years, and maybe indefinitely requiring management of a chronic illness and daily life.
Do you have or know school drop-out statistics for children and adolescents with long COVID ?
Unfortunately, we do not have official statistics on this subject. However, we know that long COVID can affect adolescents, thus impacting their functional capacity at school.