News from France

German documentary about living with ME/CFS on French-German public service TV channel, 10.07.2021, 22:40

(also available on the website during the day)

Le syndrome de fatigue chronique - L’EM/SFC, une maladie trop peu (re)connue - Regarder le documentaire complet | ARTE

"Des millions de personnes souffrent du syndrome de fatigue chronique, ou encéphalomyélite myalgique (EM/SFC) : un épuisement extrême et persistant, pour lequel il n'existe aucun remède. Enquête."

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

For info in English see News from Germany thread.

 

A planned national study, named COCOLATE, has not started yet because of funding woes, so a team is doing a study on what appears to be the immune response to vaccination. In Paris.

https://twitter.com/user/status/1412725975008301056

 

https://www.youtube.com/watch?v=AVtn9O2uE5E

 

So a group of French physicians is publishing a book with all the answers: "Long Covid: how to get over it". Over in 8 weeks, exercise, nutrition and well-being. Fortunate for them no one has ever thought of that before. They totally cracked it. Geniuses, it's fully solved, nothing left to do. And the quackery mill mills on.

https://twitter.com/user/status/1424485261988204545

 

So turns out this is actually worse, at least one of the authors is involved with the HAS committee advising the government on Long Covid. And this is their program: "reconditioning" people by making them exercise to complete exhaustion. To quote: "we make them pedal until they can't anymore".

There is a serious, fundamental, problem in medicine with learning from experience. Many physicians are completely unable to, and in good fashion they can't recognize that and believe they are absolutely nailing it. They can go through formal training memorizing textbooks but they are completely unable to learn on their own. Without a feedback mechanism and an answer sheet, they are simply incapable of recognizing what's in front of them. This is a major problem. Truly there should be tiers in medicine, the idea that everyone who goes through medical school can function as a fully licensed and independent physician is clearly wrong, some need to operate under constant supervision and should not exceed the textbook, they are incapable of it anyway.

https://twitter.com/user/status/1424513245487017988

 

That takes a very special sort of stupidity.

 

So things are definitely not getting better in France. Not sure how much reach this show has but some professor of tropical medicine (what's up with professors of tropical diseases and quackery?!) saying that effort-based rehabilitation basically works 100% of the time at their clinic, probably as long as you don't measure anything. The replies suggest this may be a tad bit dishonest.

https://twitter.com/user/status/1426237830003576834

 

Mobilization in Grenoble to demand recognition of myalgic encephalomyelitis, a disabling disease "neglected"

https://www.archytele.com/mobilizat...ephalomyelitis-a-disabling-disease-neglected/

 

Looks like a useful demonstration. Thanks to Chantal Somm and the volunteers of Millions Missing France for making this happen.

This is a good video about it for those who understand some French.

https://www.youtube.com/watch?v=Zh19yb9hl0k

 

Another in Paris.

Given the size of Long Covid and how small those protests are, the protests the ME community organized over the years look pretty damn solid all things considered. I wonder if there will ever be a fair and thorough account of everything that was done to change this.

https://twitter.com/user/status/1450178443472252929

 

Not sure of the date, in Marseilles this time. ~60 showed up.

https://twitter.com/user/status/1457796238628167681

 

Still the framing of fatigue... ugh. Medicine seriously has to deal with the fact that sick is a perfectly acceptable word and that often it's the only one that applies.

https://twitter.com/user/status/1462438220315168769

 

In this video, Johann's testimony is revealing of EM, but in the end the comment from the GP is horrible. This doctor brings everything back to the simple fatigue experienced in modern society.

 

French medicine continuing to push very hard for psychosomatizing Long Covid. The narrative is pushed everywhere.

https://twitter.com/user/status/1462834663282642944

 

It seems that some French long haulers who were hospitalized are being sent ads to participate in a mindfulness thingy by the health services. But wait, there's more: they're charged €400. Because it's not insulting enough, asking people to pay for their own gaslighting is... well, typical, frankly.

https://twitter.com/user/status/1463632402853634060

 

There is a legislative debate today in the French parliament for a LC resolution, 2nd debate.

https://twitter.com/user/status/1464258827809865732


It appears to have unanimously passed:

https://twitter.com/user/status/1464278268836777996


I don't know much about French politics, legislative resolutions are typically non-binding so I have no idea how much bite this has. I assume none at all, but that's just because it has worked out this way 100% of the time so far. Let this be the first.