News from France

This thread is intended to get an overview of ME/CFS news in France.

 

Millions Missing France just published an impressive letter that was sent to various health authorities in France.

The letter not only includes a long list of supporters but also more than 150 scientific references. Really hope this will cause a breakthrough in France. Thanks to all volunteers for this amazing work.

The letter can be viewed here: https://cloud.millionsmissing.fr/s/6Ak6t4wQnHj95yW#pdfviewer

More info:
https://twitter.com/user/status/1335899650835017730

 

Interestingly, the letter has also been supported by Eric Topol (350.000 Twitter followers) and Elisabeth Bik (80.000 Twitter followers) who are both quite respected in the international medical community.

 

This is old news but I thought it's worth posting:

https://www.independent.co.uk/life-...th-you-it-depends-where-you-live-1675127.html -

 

Not ME-related, not about the recent guidance either, but today is a day of online advocacy for Long Covid in France. They are demanding recognition and competent care and research.

In other news today the French legislature voted in favor of a bill recognizing LC. It's not good, unfortunately, very wishy-washy. But it's something to build on.

Most are in French but one example:

https://twitter.com/user/status/1362085651768729601

 

A French medical journal (trade journal, not scientific) is promoting exercise as treatment for LC "deconditioning" and psychological support as "key treatments". 1 year in and no one is learning a damn thing. Literally unable to learn from experience. Amazing.

I also notice an article on "innovative psychiatric treatments for dual pathologies", which is very likely standard BPS junk. No end in sight for this mess in France.


Covid long : l’activité physique pour passer le cap

https://www.lequotidiendumedecin.fr...id-long-lactivite-physique-pour-passer-le-cap

 

Article above is not accessible, requires subscription, but a few excerpts of an internist plainly saying this is psychosomatic, bizarrely adding this doesn't mean they are questioning the symptoms. Which would make Orwell both somewhat proud and spinning in his grave. Maybe we could channel this for some form of infinite energy...

Advises CBT and GET. This thing where medical professionals routinely make assertions without evidence is especially problematic when it happens so visibly, with people publicly sharing in this bizarre synchronized gaslighting. It may be boom time for psychosomatics but the correlate of this is an even bigger boom time ahead for alternative medicine. If the substance is the same, might as well not be insulted in the process.

https://twitter.com/user/status/1380208811387072512

 

The article above has caused quite a stir and the author is sorry people feel offended by it. And doubles down. Here is a follow-up where she says the same thing while arguing she is not saying what she is saying.

The usual "the brain works in mysterious ways" and functional disorders and illness without disease and all the same junk from the first article.

https://www.lequotidiendumedecin.fr...s-vite-les-cercles-vicieux-qui-amplifient-les

https://twitter.com/user/status/1382393393188331521

 

As part of her wishes in going through assisted suicide, a severe ME patient from France, Faustine Nogherotto, asked for her plight to be known. Millions Missing France have helped carry out her wishes and there has been a bit of news coverage, especially related to having been a contestant on the national music contest Star Academy.

The magazine Le Figaro has published an interview with a representative of Millions Missing France. It's pretty fair and representative of severe ME.

https://tvmag.lefigaro.fr/programme...-31-ans_da762684-6c9b-11eb-8216-8991a1e9eb4d/

Translation: https://translate.google.com/transl...-31-ans_da762684-6c9b-11eb-8216-8991a1e9eb4d/

 

Very pleasantly surprised to read an interview with Dr Ghali about post-exertional malaise in Long Covid and ME/CFS in the magazine Paris Match.

Dr Ghali is one of the 5 ME/CFS specialists in France, he heads the largest ME/CFS clinical unit in the country at the university hospital of Angers. His unit is the only one in France that has created a therapeutic education program on pacing for ME/CFS patients. He also conducts some clinical research (S4ME threads on his publications: 2019, 2020).

He clearly explains that PEM exacerbates all symptoms, not only fatigue, and that patients should apply pacing as early as possible in the course of their illness to avoid crashing repeatedly. They should stop their activities before they start to feel fatigued.

He strongly cautions against exercise therapy/physical rehab for ME and long Covid patients who have PEM. He says that it is not contra-indicated yet in France in this case because many doctors believe ME/CFS is a psychosomatic condition.

Vanessa Boy-Landry, the journalist who conducted the interview, had already written a complete and sympathetic article on long Covid a few months ago.

https://www.parismatch.com/Actu/San...fort-peut-aggraver-tous-les-symptomes-1735519

Translation: "Long Covid in adults and children: 'Exertion can exacerbate all symptoms'"

 

This morning, Millions Missing France were invited to a call with the French health minister, Olivier Véran, along with three other long Covid patient associations. They discussed the diagnosis of, care pathways for, and funding for research on long Covid.

(If MMF mention what points they raised, I will update this post accordingly.)

https://twitter.com/user/status/1390630939638784004

 

Great news.

Really hope that after the worst of the coronacrisis, the minister will also take time to improve the care of ME/CFS patients in France.

 

There was a videoconference yesterday with someone in the government and an alliance of Millions Missing France and long hauler groups. Not sure who they spoke with but I think the health minister was present (or merely convened it).

Generally positive but so far it's just words and a general first contact.

Feedback (positive) on the meeting convened by the Minister of Health @olivierveran, about the #covidlong , alongside our working partners at the @HAS_sante: @apresJ20 and @touspartcovid as well as representatives of France Asso Santé and the UPGCS.​

https://twitter.com/user/status/1391210289530613762


Generally I think the way to go is to bypass medical authorities and try to get leadership in politics. Someone has to unstuck that wheel from its very deep rut.

 

Mostly a solo effort but a French physio has been doing most of the work to promote sanity in Long Covid, including doing some unofficial translations, and recognized the similarities with ME:

https://twitter.com/user/status/1394326798150799376

 

Upsetting news from the national association for CFS (ASFC).

https://twitter.com/user/status/1394602185577664515


The newsletter they have sent to their members is titled "Year 2021: For a rehabilitation of fatigue!". ASFC explain that they have decided against including ME in their name because it is not used in the French medical system*, even though they recognize that "patients prefer the name ME [to CFS]" and that ME/CFS is the international term.

Instead, they may move towards the term CFIDS and advocate for undoing the stigma around fatigue. One of the paragraphs likens exhaustion in ME/CFS to "fatigue experienced by athletes of all levels".

ASFC will participate in an event dubbed "Day of Fatigues" in November along with patient associations of other health conditions, and they invite their members and their carers to write a "letter to my fatigue".

It seems that this decision was made by ASFC's administrative board alone -- members have not been asked for their input -- as per their usual modus operandi.

* While ME or CFS are not officially recognized in France, the French version of ICD-10 includes the terms PVFS and ME under the code G93.3.

 

Truly dire. Why is the situation so bad in France?

 

The LC patient population has started a campaign to raise funds for research, since the government and medical authorities are unable to do their job.

https://twitter.com/user/status/1400446740373798928

 

Very good long-form article in Paris Match on LC in kids, which is still underreported. It mentions ME briefly but the general tone really highlights the immense dysfunction and loss of credibility of medicine for pushing nonsensical psychological explanations and making people, kids, worse by forcing them into exercise rehabilitation programs.

Could be entirely about ME if not for some specific details, the details, grievances and consequences are the same. The dogmatic belief in psychosomatic medicine is unsustainable, physicians cannot keep lying and making stuff up to so many people without consequences. It puts the credibility of the entire profession into question.


Covid long enfant et ado : la détresse des familles
Long Covid kids and teens : the distress of families

https://www.parismatch.com/Actu/Sante/Covid-long-enfant-et-ado-la-detresse-des-familles-1741619
https://translate.google.com/transl...nfant-et-ado-la-detresse-des-familles-1741619