Yeah, pretty much, clueless and didn't actually learn anything.
„Final“ email newsletter from May 2026, summarising all their findings:
News from France
- Thread starter ME/CFS Science Blog
- Start date
Utterly gutless.
Anybody still in any doubt about what we are up against?
neophyte32
Senior Member (Voting Rights)
Just now: a statement from the wonderful organization Millions Missing France :
The text shown in the images is identical to the text below.
On August 6, Ameli published an update on ME that was finally consistent with the most recent research and international guidelines. The text had been approved throughout the entire CNAM (French National Health Insurance Fund) hierarchy. The update was welcomed by hundreds of patients on social media, and more than 50 media outlets reported on this significant step forward.
On August 28, however, changes were made that substantially weakened the scope of the text. Once again, hundreds of patients have expressed their anger, distress, and disappointment. Beyond the symbolic harm caused by this reversal, the new wording offers patients far less protection against potentially harmful forms of care and the inappropriate psychologisation of their illness.
Millions Missing France will take the necessary steps with the Ameli team, with whom we are already in contact.
Some context
This reversal may be explained in two ways:
1. Pressure from certain doctors
We know who they are. For decades, they have defended the hypothesis that ME is a somatoform disorder. They have built their careers on promoting cognitive and behavioural approaches and graded exercise rehabilitation, even though these approaches have failed to demonstrate meaningful benefits for people with ME and, in some cases, have proved harmful.
They are doing one thing: defending their territory and their professional standing.
The CNAM appears to be smoothing over the wording in order to avoid antagonising influential figures within the medical establishment. This raises a crucial question about the interference of private or professional interests within a public health institution.
We will, of course, make the scientific case for changing the passages that are most dangerous for patients.
2. A principle of legal caution
The French National Health Insurance Fund is also a funding body. Certain formulations may therefore have implications for how disability and incapacity are assessed.
For example, stating that repeated episodes of post-exertional malaise can worsen the illness “significantly and permanently” could provide a powerful legal basis for challenging disability assessment criteria. This may explain why that wording was removed and replaced with the word “temporary”.
We will propose alternative wording that does not put patients at risk while also addressing the CNAM’s potential legal concerns.
3. Other changes are particularly surprising:
- The removal of the practical list on pacing, for reasons we do not understand.
- The removal of the link to our guide. Our guide is freely accessible and does not collect any personal information, in accordance with the French Digital Republic Act (Loi Lemaire) and the GDPR. By contrast, the link to the ASFC booklet has been retained, even though it does not meet these criteria and redirects users to an order form.
We will ask either for the link to our guide to be reinstated or for the link to the ASFC booklet to be removed. Either both should be included, or neither.
- The removal of the Mayo Clinic publication.
The Mayo Clinic is one of the most respected and widely cited medical institutions in the world, regularly ranked among the leading hospitals in the United States and internationally, with an enormous scientific output and several world-leading specialties.
We will request that this publication be reinstated.
- The addition of publications that are highly controversial within the scientific community, particularly the PACE Trial, along with other references promoting rehabilitation and CBT, despite their inconsistency with the actual wording of the Ameli page.
Several of these references do not even concern properly defined ME populations, as their cohort selection criteria did not require post-exertional malaise — which is essential for an ME diagnosis.
We will request their removal and support that request with scientific evidence.
Please be patient: this will probably take several weeks...
Despite all of this, the current page remains considerably better than the 2024 version and preserves several important advances.
The text shown in the images is identical to the text below.On August 6, Ameli published an update on ME that was finally consistent with the most recent research and international guidelines. The text had been approved throughout the entire CNAM (French National Health Insurance Fund) hierarchy. The update was welcomed by hundreds of patients on social media, and more than 50 media outlets reported on this significant step forward.
On August 28, however, changes were made that substantially weakened the scope of the text. Once again, hundreds of patients have expressed their anger, distress, and disappointment. Beyond the symbolic harm caused by this reversal, the new wording offers patients far less protection against potentially harmful forms of care and the inappropriate psychologisation of their illness.
Millions Missing France will take the necessary steps with the Ameli team, with whom we are already in contact.
Some context
This reversal may be explained in two ways:
1. Pressure from certain doctors
We know who they are. For decades, they have defended the hypothesis that ME is a somatoform disorder. They have built their careers on promoting cognitive and behavioural approaches and graded exercise rehabilitation, even though these approaches have failed to demonstrate meaningful benefits for people with ME and, in some cases, have proved harmful.
They are doing one thing: defending their territory and their professional standing.
The CNAM appears to be smoothing over the wording in order to avoid antagonising influential figures within the medical establishment. This raises a crucial question about the interference of private or professional interests within a public health institution.
We will, of course, make the scientific case for changing the passages that are most dangerous for patients.
2. A principle of legal caution
The French National Health Insurance Fund is also a funding body. Certain formulations may therefore have implications for how disability and incapacity are assessed.
For example, stating that repeated episodes of post-exertional malaise can worsen the illness “significantly and permanently” could provide a powerful legal basis for challenging disability assessment criteria. This may explain why that wording was removed and replaced with the word “temporary”.
We will propose alternative wording that does not put patients at risk while also addressing the CNAM’s potential legal concerns.
3. Other changes are particularly surprising:
- The removal of the practical list on pacing, for reasons we do not understand.
- The removal of the link to our guide. Our guide is freely accessible and does not collect any personal information, in accordance with the French Digital Republic Act (Loi Lemaire) and the GDPR. By contrast, the link to the ASFC booklet has been retained, even though it does not meet these criteria and redirects users to an order form.
We will ask either for the link to our guide to be reinstated or for the link to the ASFC booklet to be removed. Either both should be included, or neither.
- The removal of the Mayo Clinic publication.
The Mayo Clinic is one of the most respected and widely cited medical institutions in the world, regularly ranked among the leading hospitals in the United States and internationally, with an enormous scientific output and several world-leading specialties.
We will request that this publication be reinstated.
- The addition of publications that are highly controversial within the scientific community, particularly the PACE Trial, along with other references promoting rehabilitation and CBT, despite their inconsistency with the actual wording of the Ameli page.
Several of these references do not even concern properly defined ME populations, as their cohort selection criteria did not require post-exertional malaise — which is essential for an ME diagnosis.
We will request their removal and support that request with scientific evidence.
Please be patient: this will probably take several weeks...
Despite all of this, the current page remains considerably better than the 2024 version and preserves several important advances.
Yann04
Senior Member (Voting Rights)
Could you link to where they posted it? Don’t see it on their bluesky.Just now: a statement from the wonderful organization Millions Missing France :
On August 6, Ameli published an update on ME that was finally consistent with the most recent research and international guidelines. The text had been approved throughout the entire CNAM (French National Health Insurance Fund) hierarchy. The update was welcomed by hundreds of patients on social media, and more than 50 media outlets reported on this significant step forward.
On August 28, however, changes were made that substantially weakened the scope of the text. Once again, hundreds of patients have expressed their anger, distress, and disappointment. Beyond the symbolic harm caused by this reversal, the new wording offers patients far less protection against potentially harmful forms of care and the inappropriate psychologisation of their illness.
Millions Missing France will take the necessary steps with the Ameli team, with whom we are already in contact.
Some context
This reversal may be explained in two ways:
1. Pressure from certain doctors
We know who they are. For decades, they have defended the hypothesis that ME is a somatoform disorder. They have built their careers on promoting cognitive and behavioural approaches and graded exercise rehabilitation, even though these approaches have failed to demonstrate meaningful benefits for people with ME and, in some cases, have proved harmful.
They are doing one thing: defending their territory and their professional standing.
The CNAM appears to be smoothing over the wording in order to avoid antagonising influential figures within the medical establishment. This raises a crucial question about the interference of private or professional interests within a public health institution.
We will, of course, make the scientific case for changing the passages that are most dangerous for patients.
2. A principle of legal caution
The French National Health Insurance Fund is also a funding body. Certain formulations may therefore have implications for how disability and incapacity are assessed.
For example, stating that repeated episodes of post-exertional malaise can worsen the illness “significantly and permanently” could provide a powerful legal basis for challenging disability assessment criteria. This may explain why that wording was removed and replaced with the word “temporary”.
We will propose alternative wording that does not put patients at risk while also addressing the CNAM’s potential legal concerns.
3. Other changes are particularly surprising:
- The removal of the practical list on pacing, for reasons we do not understand.
- The removal of the link to our guide. Our guide is freely accessible and does not collect any personal information, in accordance with the French Digital Republic Act (Loi Lemaire) and the GDPR. By contrast, the link to the ASFC booklet has been retained, even though it does not meet these criteria and redirects users to an order form.
We will ask either for the link to our guide to be reinstated or for the link to the ASFC booklet to be removed. Either both should be included, or neither.
- The removal of the Mayo Clinic publication.
The Mayo Clinic is one of the most respected and widely cited medical institutions in the world, regularly ranked among the leading hospitals in the United States and internationally, with an enormous scientific output and several world-leading specialties.
We will request that this publication be reinstated.
- The addition of publications that are highly controversial within the scientific community, particularly the PACE Trial, along with other references promoting rehabilitation and CBT, despite their inconsistency with the actual wording of the Ameli page.
Several of these references do not even concern properly defined ME populations, as their cohort selection criteria did not require post-exertional malaise — which is essential for an ME diagnosis.
We will request their removal and support that request with scientific evidence.
Please be patient: this will probably take several weeks...
Despite all of this, the current page remains considerably better than the 2024 version and preserves several important advances.
