News from France

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.
 
Last edited:
France, but also bits of Luxemburg. Basically an app to track symptoms, looks kind of similar to Visible. It seems to have been built to work with health care, but haven't looked into how well, in association with France's biggest Long Covid community, Après J20 (after day 20).
Nous sommes heureux de vous annoncer la sortie de "Long COVID Companion", notre toute nouvelle application co-conçue par @LIH_Luxembourg, des patients, des experts et des bénévoles de notre association #ApresJ20 !
Click to expand...
Click to expand...

The LIH is delighted to launch an app to help people with Long #COVID manage their condition & improve their quality of life. 'Long COVID Companion', was created with input from COVID sufferers, healthcare pros & patient partners from @apresj20. MORE: https://bit.ly/LongCOVIDApp
Click to expand...
Click to expand...
 
Arte which is the most popular channel to watch documentaries on in France, has made an ME/CFS documentary (I think Arte is also popular in Germany).

I’m not able to watch and haven’t seen anyone mention it so I don’t know if it’s any good. But it’s a pretty big thing that Arte made one I think.

The title (translated by me) is:
Chronic fatigue syndrome: An illness that is known/recognised too little.

https://www.arte.tv/fr/videos/096283-000-A/le-syndrome-de-fatigue-chronique/

The description (translated)
Millions of people suffer from myalgic encephalomyelitis (ME): a condition of extreme and persistent exhaustion for which there is no cure. An investigation.


“It’s like being unplugged,” says Sonja Kohl, 39, describing chronic fatigue syndrome—or myalgic encephalomyelitis (ME/CFS)—which she has suffered from for eight years. She spends nearly all her time lying in bed, in the dark, unable to perform any physical or mental activity or tolerate daylight. Globally, 17 to 24 million people endure the same fate, including approximately 250,000 in France. Despite their numbers, medicine offers no cure, as this poorly understood illness is neglected by research, primarily due to a lack of funding. This disregard also leads to delayed or incorrect diagnoses and minimal coverage for associated costs, such as hiring in-home assistance or acquiring a wheelchair.


However, since the emergence of SARS-CoV-2, ME/CFS has gained renewed visibility. Between 1% and 2% of people infected with the virus experience “long COVID,” presenting similar, prolonged symptoms. While no definitive link between the two conditions has been established, this observation opens new avenues for research.


Shadows of Their Former Selves

This documentary also delves into the painful daily lives of Ralf (58) and Aileen (17), who, like Sonja, feel they have become shadows of their former selves. Their testimonies are all the more striking when contrasted with photos and videos of their previously active and fulfilling lives. Daniela Schmidt-Langels follows them to their appointments with leading ME/CFS researchers, whose insights, illustrated with diagrams, help explain the various hypotheses about the disease’s origin and nature.
Click to expand...
 
It actually seems okay given the description but this part is a massive facepalm

However, since the emergence of SARS-CoV-2, ME/CFS has gained renewed visibility. Between 1% and 2% of people infected with the virus experience “long COVID,” presenting similar, prolonged symptoms. While no definitive link between the two conditions has been established, this observation opens new avenues for research.
Click to expand...

Like hello tens of thousands literally developed extremely typical ME from COVID?
 
You must log in or register to reply here.
Back
Top Bottom