Copied from the News from France thread The French Committee on the Monitoring and Anticipation of Health Risks (COVARS) just published an astonishing report on long Covid that was commissioned by the Ministry of Health and the Ministry of Research. Millions Missing France was one of the three patient associations that participated. The committee calls for: - its recognition within the broader context of post-acute infection syndromes, which they acknowledge have been around for as long as can be remembered, going so far as to cite the epidemic of “Russian flu” in 1890, and should be a key part of preparedness plans to respond to future epidemics - the recognition of the many symptoms that it causes, notably prolonged and severe fatigue that has a significant impact on daily activities, neurocognitive impairment, and a wide array of dysautonomic symptoms - a strong opposition to the psychologisation of symptoms, by: writing explicitly (in bold font) that “Post-infectious syndromes are not psychosomatic disorders” and formally outlining the differences between the two insisting that only a minority of patients suffer from a psychosomatic disorder instead of long Covid noting that psychologisation results in large part from a lack of knowledge / education on post-infectious syndromes in the medical body noting that trials of CBT have shown statistically significant but not or very limited clinically relevant improvements, such that CBT cannot constitute a cornerstone of the treatment of long Covid raising awareness of the many deleterious consequences of psychologisation on patients such as misdiagnosis, occupational, financial and psychological impact (trauma, anxiety, loss of self-esteem, depression) - a massive investment in care pathways across the whole French territory, biomedical research and medical education for all post-acute infection syndromes, including a hub for coordinating epidemiological surveys / data gathering and biomedical research This is the first time ever that such clear-cut language is used in a report on long Covid and post-acute infection syndromes. There will probably be a significant pushback from psychosomaticians. Link to the report (in French): https://www.enseignementsup-recherc...novembre-2023---syndrome-post-covid-29922.pdf If someone has access to DeepL Pro, I would be very grateful if it could be translated into English.
That sounds amazing. What a breakthrough. Same. It sounds as though it could be very useful for advocacy.
On the downside, the report also calls for the same old “holistic” and “non dualistic” care model for long Covid centered around three pillars: a clinician MD (GP, internist, etc), a rehabilitation specialist such as a PT and psychological care (psychiatrist / psychologist). PEM is not mentioned nor taken into account as a precaution for rehab, even though Simon Décary participated to the report.
I think this idea of a substantial reduction in risk with more recent variants and immunity acquired after infections and vaccination may have quite a lot of wishful thinking to it. Even with a substantial reduction in risk, the issue of Long Covid after repeat infections is a real worry. With that, it's not a case of the infection moving through the population once, leaving all those people vulnerable to developing Long Covid affected, many of whom recover over time, with everyone else fine forever more. Instead, it's possible that there will be a gradual increase in people with Long Covid. We don't know.
The report notes that while no definitive biomarker has been identified for long Covid and that studies documenting biological abnormalities (in particular immunological ones) are limited by their heterogeneity, there are enough of them to conclude that there is an organic basis to long Covid and that a FND-like mechanism, if present, can only be an aggravating factor rather than a cause for the symptoms of LC (bolding present in the original document): With regards to pathophysiological mechanisms, they propose a few main hypotheses: - low grade viral persistence or persistence of non-replicative viral fragments in immune-privileged reservoirs (such as the gut, the olfactive bulb, the CNS) that could lead to “cellular toxicity and low grade chronic inflammation causing tissue damage over the long term” - “numerous immuno-inflammatory abnormalities” characterized by a “state of chronic activation of immune cells and abnormally elevated levels of cytokines, of low specificity but which has typically been observed in post-infectious syndromes” - “inflammatory damage of the central nervous system”: “direct neuroviral toxicity, astrocyte activation, cerebral immunity dysfunction processes, damage to the lining of small blood vessels” as well as cerebral hypometabolism documented via PET-MRI scans - gut dysbiosis - vascular inflammation Secondary hypotheses that have not been as thoroughly documented: - various CNS dysregulation processes: Downregulation of the hypothalamic-pituitary-adrenal (HPA) axis, leading to low cortisol levels, which has been “evoked” by “certain studies” in “other post-infectious syndromes, such as chronic fatigue syndrome” reduced serotonin secretion abnormal signal processing (FND) - Mitochondrial damage - Epigenetic modifications
Looks like a good report indeed. As cassava says, it calls for awareness campaigns on post-infectious syndromes, education in medical schools, more funding for research. It clearly states that post-infectious syndromes are not somatoform, that all illnesses have psychological components, that the clinical effects of CBT are not that large that it should be the center of treatment. It also states that patient experts should be involved in setting up a care network. The main downsides are ME/CFS and PEM are not clearly mentioned or explained. The report could have stated that many patients with post-infectious syndromes receive the diagnosis ME/CFS and that PEM is one of the most notable symptoms reported by Long Covid patients.
Great to see the report treats people with long Covid and post-acute infection syndromes appropriately. However, I'm wondering if this could be turned into something more e.g. the MRC (expert) group Jonathan sat on, i.e. convened to identify potential areas to research, led to DecodeME. Any similar routes to fund research in France?
