News from France

After more than 20 months, French medical authorities in Occitanie have finally decided to... offer the same failed model that has failed everywhere: rehabilitation and physical reeducation.

"Listening to sick people", uh uh. Still zero clue what LC is, just not paying attention.
[ #Covid19 ] Listening to sick people and professionals, the management of the most complex cases of long covid continues to progress in #Occitanie : the @ARS_OC has just selected 6 medical referral centers and 18 rehabilitation and rehabilitation centers.
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PEM is now listed as a symptom of Long Covid in France. I don't think this rises to the level of "recognizing", since it means nothing until medical professionals are trained on and apply this knowledge reliably in clinical practice, which is basically 99.9% of the work. So with the UK going first, France is the 2nd country to at least minimally acknowledge that PEM is a thing.... in Long Covid, while continuing to pretend that ME has never existed and probably never will. This is so silly, like recognizing that other planets aren't flat, just the Earth. Urgh.

(Original translation was post-effort discomfort, ugh)
Post-exertional malaise (MPE) finally recognized as symptoms of #CovidLong and written in full in the press kit of the
@Sante_Gouv There is still a lot to do but we are making progress Thanks to our partners @GillesThoni @MillionsMissgFr who we work with ->MPE
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rvallee said:
PEM is now listed as a symptom of Long Covid in France. I don't think this rises to the level of "recognizing", since it means nothing until medical professionals are trained on and apply this knowledge reliably in clinical practice, which is basically 99.9% of the work. So with the UK going first, France is the 2nd country to at least minimally acknowledge that PEM is a thing.... in Long Covid, while continuing to pretend that ME has never existed and probably never will. This is so silly, like recognizing that other planets aren't flat, just the Earth. Urgh.
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PEM has been acknowledged in Long Covid in the USA.

Has it in the UK??
 
Some French scientific committee has published an opinion labeling Long Covid and post-infectious syndromes in general as functional disorders. Hard to dispute that evidence is entirely irrelevant in so-called evidence-based medicine. There's the extra irony that they are labeled as psychosomatic, with an admission that they are poorly understood and understudied, which is basically the entire makeup of everything psychosomatic. Out of ignorance, come psychosomatics. Always ignorant.

 
https://solidarites-sante.gouv.fr/s...e&recherche=des+syndromes+des+post-infectieux

pdf: https://solidarites-sante.gouv.fr/IMG/pdf/avis_du_covars_du_20.10.2022_sur_le_covid-19.pdf

Google translate of relevant section:

D. Clinical impact of the current epidemic

The epidemic wave that appeared in mid-September 2022 and linked to the Omicron BA.4/BA.5 subvariants has a less significant direct hospital impact than previous waves. Current support for
COVID-19 is mainly ambulatory, with symptomatic infection resulting in people vaccinated "immuno-competent", by an acute febrile illness, mainly ENT, followed by 1 to 2 weeks of asthenia.

Re-infections seem more frequent than with the BA.1 and BA.2 viruses, often little symptomatic, but remain rare and are being analyzed.

However, very old people or with immunosuppression who respond poorly to vaccines, people who are not or incompletely vaccinated remain at risk of severe form of COVID-19 and worsening of an underlying comorbidity requiring hospitalization, or even intensive care, which can lead to death (+112 death on 17/10/2022 according to SPF). In addition, viral replication is often prolonged in these patients, which amplifies the risk of emergence of a new mutation, especially in the presence of a sub-optimal treatment.

Prior exposure to SARS-COV2 infections and vaccination could account for the limiting the severity of the disease in the majority of cases. The management of the COVID-19 pandemic must also integrate the long-term, multiple and systemic, directly related to the virus.

Persistent forms of COVID-19 constitute an entity complex in its definition, pathophysiology, description, variable clinical expression and fluctuating confusing patients and caregivers who are sometimes helpless or even defeated. Despite difficulties of detection, SPF estimates that approximately 2 million people were affected in France in April 2022 (i.e. 30 % of people infected with SARS-CoV-2 more than three months ago), the prevalence being higher in women, the active and after hospitalization, but decreasing with time since infection.

However, 18 months after infection, more than 20% of people who have been infected with SARS-CoV-2 were still showing signs of a post-COVID-19 condition. The care offer remains heterogeneous on the territory, with sectors often quickly saturated when they exist. The scientific debate also exists as to the imputability of the symptoms to SARS-CoV-2 or another trigger agent. Research work on "COVID-long" should make it possible to better approach the complexity of post-infectious syndromes in general, improve the management of these so-called "functional" poorly known and little studied.
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text quoted in Tweet underlined.

"so-called "functional" poorly known and little studied" - doesn't exactly sound especially negative - unless Google translate is giving an especially anodyne view. Other than some general comments about general mental health and a comment about mental well being of young people, there doesn't seem to be anything re: psychology/psychiatry.
 
CRG said:
"so-called "functional" poorly known and little studied" - doesn't exactly sound especially negative - unless Google translate is giving an especially anodyne view. Other than some general comments about general mental health and a comment about mental well being of young people, there doesn't seem to be anything re: psychology/psychiatry.
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From what I see coming out of France, it's as bad as in Norway or Denmark. The entire system is obsessed with psychosomatics and considers it a fact as plain as the Earth being round. I haven't seen much that isn't fully this, and what's said privately is even worse.

Zero chance this is not bad and intended to stick with full BPS.
 
I get the impression that France isn't good with chronic conditions. Some years back, I heard of doctors in France trying to psychologize autism.
 
rvallee said:
From what I see coming out of France, it's as bad as in Norway or Denmark. The entire system is obsessed with psychosomatics and considers it a fact as plain as the Earth being round. I haven't seen much that isn't fully this, and what's said privately is even worse.

Zero chance this is not bad and intended to stick with full BPS.
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Yes - though best to avoid labelling a committee as a pro psych when it's said nothing of the sort.

France is a unique case, no other Country has made intellectualism such a major part of its National identity and nowhere else has 'psychologie' been part of intellectualism. Psychoanalysis especially has an authority in French national life that far exceeds its role in medicine, as such removing its influence from within medicine is a far greater challenge than just rejecting a single psychological model. I maybe missing something but there seems little in the way of BPS influence in French psychology and the role psychosomatics seems somewhat unfocused: Psychosomatic Medicine in France
 
CRG said:
Yes - though best to avoid labelling a committee as a pro psych when it's said nothing of the sort.

France is a unique case, no other Country has made intellectualism such a major part of its National identity and nowhere else has 'psychologie' been part of intellectualism. Psychoanalysis especially has an authority in French national life that far exceeds its role in medicine, as such removing its influence from within medicine is a far greater challenge than just rejecting a single psychological model. I maybe missing something but there seems little in the way of BPS influence in French psychology and the role psychosomatics seems somewhat unfocused: Psychosomatic Medicine in France
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I am French and I have advocated for a ME association. It is absolutely wrong to say that the BPS model is not influent in France. Just as in the US and the UK, the BPS model of chronic pain is seen as the Holy Grail of good healthcare such that all pain centers are based on it.

With regards to Covid, the French College of Psychiatry has a significant influence on this COVARS committee as well as on the long Covid guideline committee at the HAS (French equivalent of NICE). A consultant who is involved in setting up long Covid care pathways personally told me, during an advocacy call, that they have considerable lobbying power.

In fact, the head of the long Covid committee at the HAS was almost fired from her position as co-lead of the infectious diseases unit of the hospital she works at because she was considered to have committed a serious professional error by treating her patients outside the long Covid center set up at her hospital. This center is run by the head of the psychiatry unit, a very vocal BPS proponent… who also happens to sit on the HAS committee for long Covid.

As for psychanalysis, it remains present but French organizations that promote critical thinking and evidence-based medicine have been keen on debunking it. However, and sadly, the very same people are in favour of the BPS model. It is a Kafkaesque situation.
 
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@cassava7 Do these French BPS proponents publish - or just propound from positions of authority ? I'd be interested in names/papers.
 
CRG said:
@cassava7 Do these French BPS proponents publish - or just propound from positions of authority ? I'd be interested in names/papers.
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You could look at the works of Prof Pascal Cathébras — an internist and long time denialist of ME and fibromyalgia who has expressed his support towards Wessely, Sharpe against patient-activists —, in particulier his well known book “Troubles somatiques fonctionnels” (2006), as well as those of Prof Cédric Lemogne (psychiatrist). Recently, Prof Brigitte Ranque (internist) has teamed up with Lemogne.

They all hold positions of authority, so it is a combination of authority and publications that make them influent.
 
Merged thread

Suffering from myalgic encephalomyelitis, Laëtitia experiences “hell” in her “centenarian body”

She immediately apologizes for receiving us in her pajamas in her bed, her only “living space” today. A recluse life between the four walls of a room, sheltered from the light and noises that she can no longer stand. “I only leave the house twice a year and only to go to the hospital,” says Laëtitia Kerlo. It has been almost five years since the destiny of this 47-year-old mother living in the Rennes area changed. February 1, 2019 precisely. Full of life, she was then a first grade teacher in a school in Rennes. As the weekend started, a severe flu came and confined her to bed. “I have never been relieved since and I have never seen my students again,” she confides, wiping away a few tears.

For a year, doctors tried to understand the illness that was gnawing at her. In vain. “One of them even told me that I was making up my symptoms,” remembers Laëtitia. It was ultimately only in 2020 that a specialist from Angers University Hospital diagnosed him with his illness, myalgic encephalomyelitis. A neurological disease recognized since 1969 by the World Health Organization but which remains little known in France where it nevertheless affects to varying degrees several tens or even hundreds of thousands of people. “We have long called it chronic fatigue syndrome,” explains the forty-year-old. But it’s not fatigue that I suffer from but generalized exhaustion of the body. »

A cross on his professional, family and social life
On a daily basis, the life of this mother resembles “hell” from which she “cannot see the end of the tunnel.” » Every trivial gesture such as making coffee, brushing his teeth and even speaking requires a superhuman effort, forcing him to then rest. “I have to listen to my body and break up each activity,” she explains. Of her previous life, there is not much left except the love she has from her son and her husband “who takes care of absolutely everything and no longer has any leisure activities”. Recognized as a category 2 invalid, she has of course given up on the job she loved so much. Struggling to move around in her “centenarian body”, she has also given up all outside activity. “I managed to go on my terrace once this summer, a real feat,” she smiles. For the rest, my husband and my son go on vacation alone and I stay here. »
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https://time.news/suffering-from-my...tia-experiences-hell-in-her-centenarian-body/
 
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Merged thread

#millionsmissing France demo today

Rendons visible l’encéphalomyélite myalgique à Rennes ! Place de la Mairie Urrugne, 30 septembre 2023 14:30, Urrugne.
L’EM est une pathologie chronique invalidante. Les malades, confinés à domicile ou au lit, n’ont ni prise en charge ni traitements. Millions Missing France les rend visibles & audibles ! Samedi 30 septembre, 14h30 1
https://framaforms.org/action-millionsmissing-rennes-30-septembre-participer-1685023812

EM : plus de 500 000 malades en France, sans prise en charge, ni traitements…
RDV à Rennes le 30 septembre 2023 pour :
? les rendre visibles et audibles
? informer sur la maladie
? alerter sur le nombre important de déclenchement d’EM suite à une infection au Covid-19 : urgence de santé publique !

Au programme
? Stands d’information, prise de paroles, distribution de flyers, champ de chaussures pour représenter les malades absents, photos, rencontres et goûter

Pratique
Le lieu : à confirmer, ce sera sur une place accessible ♿ du centre-ville de Rennes. Suivez le tableau d’infos.
Voici un questionnaire en ligne pour faciliter l’organisation !
? Malades, proches, sympathisant·es ? Rejoignez-nous, invitez à participer ! Nous avons besoin de monde pour représenter les malades qui ne peuvent pas quitter leur domicile ou même leur lit.
Si vous le pouvez, venez avec un haut rouge, la couleur du mouvement international #MillionsMissing ! Nous prêterons également des tee-shirts.

————————————

L’encéphalomyélite myalgique (EM)
C’est une pathologie invalidante et dévastatrice. Elle est déclenchée généralement par une infection parfois banale, le plus souvent virale (mononucléose, grippe, à coronavirus…).
L’OMS reconnaît l’EM depuis 1969 comme maladie neurologique, la France toujours pas. Pourtant nous étions environ 300 000 dans ce pays AVANT la pandémie…
Une partie importante des malades Covid long développe une encéphalomyélite myalgique. Ce sont des centaines de milliers de malades qui rejoignent nos rangs : urgence de santé publique !

Nous demandons :
? la formation des professionnels de santé à l’EM et à son symptôme spécifique, le malaise post-effort.
? une prise en charge adaptée des malades
? le financement de la recherche bio-médicale, conformément à la résolution européenne de juin 2020
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https://www.unidivers.fr/event/urrugne-place-de-la-mairie-2023-09-30/

https://millionsmissing.fr/
 
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