News from France

This is the future of medicine. Not because it's any good, it's what they want to be true.
It is in no small part because they are not competent to deal with the real problem and all its unknowns, so they just invent non-explanations and non-treatments for it to avoid having to face all that, and justify shifting the blame to patients for not getting better.

It's insane, completely counterproductive by any meaningful measure, and very cruel. But here we are. It really is the way it is right now.
 
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Huge news and a victory for French ME/CFS associations: the social security system has finally recognized ME/CFS and, crucially, updated its guidelines.
No physical rehabilitation, no CBT, and an accurate description of post-exertional malaise.
There is also an update on the figures : an estimated 700,000 people affected, rather than the previous estimate of over 200,000. That is one in every 100 people. How is it possible that doctors on the ground, especially in major hospitals, still refuse to help us ? Neurologists, in particular.

Still, it is a major victory for French patients.
 
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Huge news and a victory for French ME/CFS associations: the social security system has finally recognized ME/CFS and, crucially, updated its guidelines.
No physical rehabilitation, no CBT, and an accurate description of post-exertional malaise.
There is also an update on the figures : an estimated 700,000 people affected, rather than the previous estimate of over 200,000. That is one in every 100 people. How is it possible that doctors on the ground, especially in major hospitals, still refuse to help us ? Neurologists, in particular.

Still, it is a major victory for French patients.
The Article in question
 
Good news. I can see that the newspaper isn’t quite sure what the social security authorities have done. Whether recognising ME, or ME/CFS? given that the diagnosis of CFS alone has always been the one made. I have a feeling there’s going to be a bit of confusion in social services as well.
 
Huge news and a victory for French ME/CFS associations: the social security system has finally recognized ME/CFS and, crucially, updated its guidelines.
No physical rehabilitation, no CBT, and an accurate description of post-exertional malaise.
There is also an update on the figures : an estimated 700,000 people affected, rather than the previous estimate of over 200,000. That is one in every 100 people.
:)
 
"It is wrong to assume that the illness is the result of the affected person’s thoughts or behaviour. Myalgic encephalomyelitis should not be regarded as a psychological disorder."

The final chapter of the new guidelines on "ME or ME/CFS", concerning CBT! On the Social Security website.

It’s not bad overall, apart from the (missing) risks and guidelines for very severe cases.
No epidemiological study has been carried out, so they acknowledge that if we add in post-Covid cases, the figure must be higher than the previous 300,000.

Nevertheless, it is a list of negative points:
They haven’t been diagnosed,
So they haven’t been counted,
No research has been funded,
There is no treatment available,
We are lagging behind other European countries.
(it’s good that it’s on the public website).

Thanks to MP Sandrine Runel for raising the issue again on 21 July in the National Assembly.
 

Patients welcome the first official recognition of chronic fatigue syndrome by the national health insurance system.
The health insurance system therefore no longer links myalgic encephalomyelitis to a psychiatric or psychological disorder, France Inter reported on Friday. A patients’ association described this “institutional” recognition as an “important milestone.”​

For Pietro Tomé, president of Afemise, the French association for myalgic encephalomyelitis, this represents a genuine step forward for patients, who have often heard “It’s all in your head,” or “There’s nothing wrong with you,” during medical consultations.
According to him, there has been a “very strong psychologization of the illness, with everything being explained by a psychological problem.” “All you’d have to do is do a little exercise, make a little effort and meditate a little, and you’d feel much better,” he says ironically, before adding: “This is really something that people suffer from quite profoundly in France.”

Following the update by the national health insurance system, Afemise described it as an “important step forward” on its website on August 8. “The national health insurance system’s Ameli website has just published a detailed page on ME/CFS.
In particular, it recognizes post-exertional malaise as a central symptom, the different levels of severity, the importance of pacing [energy management], and the risks associated with graded exercise programs.”
The association described this “institutional” recognition as an “important milestone” and said it would continue “to work toward obtaining French recommendations, training, and genuinely appropriate care pathways.”

Often forced to take sick leave, patients are now also hoping for administrative recognition of myalgic encephalomyelitis as a long-term condition qualifying for special coverage.
 
Wow, this sounds like a great victory to be celebrated. Congratulations to everyone who worked to achieve this. I hope it makes things much better for people with ME/CFS in France, and opens up funding for good research.

“The national health insurance system’s Ameli website has just published a detailed page on ME/CFS.
In particular, it recognizes post-exertional malaise as a central symptom, the different levels of severity, the importance of pacing [energy management], and the risks associated with graded exercise programs.”
That seems great. Is it relatively free of bio babble too?
 
But be aware : French doctors fail to recognize the disease in 99% of cases. We have only two genuine specialists for 700,000 patients. I don't want to dampen anyone's enthusiasm, but still... We also have no research into ME/CFS...
France used to be a major player in research, but our institutions do not believe in post-viral syndromes.

The next battle, a less cheerful one, is authorizing euthanasia for severe ME/CFS patients. Euthanasia has just been voted through by the French Parliament and ratified by the Senate.
 
It reads pretty much like an S4ME fact sheet! Very much sticking to the essentials of the disease. Succinct.
Better than anything from UK government sources I suspect.
I agree, it’s very good. There nothing about pathology, good info about pacing, explicit recommendations agains GET and CBT, explicit rejections of psychological factors and lack of activity as causes or maintaining factors of ME/CFS, and even some mention of nutritional failure due to being unable to care for oneself, especially for the more severely affected.

 
I sadly don't believe it will actually mean something, a 100% perfect streak of failure doesn't lend to giving the benefit of the doubt, but what I have read in there is pretty solid and some of the most direct language I have seen. Instead of dithering about uncertain evidence, leaving the always-on possibility that it may be promising, it simply says there is no evidence for either CBT or GET and that their use can lead to harm. Maybe the fact of this being medico-legal will have the weight it deserves, but everything depends on what happens in secret, behind closed doors, where everything about us actually happens.

It cites the rejected and unimplemented NICE document and an excellent document produced by the INESS, our sort of version of the same thing in Quebec, and which was more assertive and informed than the NICE guideline. Pretty much no babble detected. The only odd thing is a reference that PEM can last longer than 14 hours (and days to weeks). The 14 hours is just oddly specific, but about the only odd thing that I noticed.
 
Je suis très contente de voir cette nouvelle! Et de voir qu'un document de ma province d'origine a aidé ce changement. J'espère que la situation s'améliore pour vous en France.
I am very happy to see this news! And to see that a document from my home province helped this chance. I hope that the situation gets better for those of you in France.
 
“The national health insurance system’s Ameli website has just published a detailed page on ME/CFS.
I was so impressed with Ameli's article I even responded to the 'Cet article vous a-t-il été utile?' question - something I normally never do - with an emphatic 'Oui'

Whether the article makes much practical difference to how pwME are treated remains to be seen but having this sort of information published by a national health insurer has got to be a step in the right direction. Bravo everyone who helped make this happen!
 
Just as I feared, we had an extraordinary window of opportunity in the media to talk about ME/CFS following its recognition by the national health insurance system.

At least seven major French media outlets covered it. BUT the journalists immediately displayed a bias: "But we're all tired, this 'Chronic Fatigue Syndrome' is bound to lead to abuse." Not a single one mentioned myalgic encephalomyelitis.
The guests supposed to advocate for patients—doctors and those with mild cases—were very weak, and the doctors didn't have a firm grasp of the subject at all. They made vague comments like, "Sometimes you can spot this disease in blood tests via certain autoantibodies."

In short, 95% of the comments on forums or Twitter mocked the illness... all because of headlines like "Chronic Fatigue Syndrome recognized by Social Security."

Journalists never present it as a serious neurological disease on par with Parkinson's or similar conditions, instead, they treat it as an almost comical topic (fatigue, depression, etc.).

From a media perspective, the odds are truly stacked against us.
 
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