News from France

[Sean]

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.

 

[neophyte32]

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.

 

[Yann04]

View attachment 33681

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

Une maladie qui touche plus de 700 000 personnes en France est enfin reconnue par la sécurité sociale

L'encéphalomyélite myalgique (EM) a longtemps été mal perçue par le corps médical, entre errance et erreur de diagnostic...

actu.fr

 

[NelliePledge]

Well done to those involved

 

[Axel]

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.

 

[Sean]

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.

 

[Axel]

"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.