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.
Chandelier
Senior Member (Voting Rights)
Working conditions, Covid... why are sick leave numbers breaking records?
The government deplores the sharp increase in the number of sick leaves "since 2020" and is tightening the screws: limiting duration, capping compensation and fighting against abuses.
www.dna.fr
Lots of discussions of Long Covid. Oddly enough, every government is holding on to both "if this LC thing were true, we would see this in the data", as they all whine about the data (which isn't the consequences of COVID here but a lot of it is), but prefer to attribute it to the same vague generic "people don't want to work anymore", while also saying it's not happening elsewhere, even though it clearly is.
The government deplores the sharp increase in the number of sick leaves "since 2020" and is tightening the screws: limiting duration, capping compensation and fighting against abuses.
Décryptage. Conditions de travail, Covid... pourquoi le nombre d'arrêts maladie bat des records
Le gouvernement déplore la forte hausse du nombre d'arrêts maladie et serre la vis : limitation de durée, plafonnement des indemnités et lutte contre les abus.
www.dna.fr
Lots of discussions of Long Covid. Oddly enough, every government is holding on to both "if this LC thing were true, we would see this in the data", as they all whine about the data (which isn't the consequences of COVID here but a lot of it is), but prefer to attribute it to the same vague generic "people don't want to work anymore", while also saying it's not happening elsewhere, even though it clearly is.
Yes. Then there are the heatwaves, which have become a regular occurrence since 2019, leading to accidents whilst they last, but I suppose health problems are also likely to arise if we carry on as if nothing has happened.
As Mr Cursed (M le Maudit) would say: ‘Who would have thought?’
bicentennial
Senior Member (Voting Rights)
Good. It is now incroyable.
When my risk assessment was professionally skewed it went off the charts so then no-one believed a word I said.
Vertlartnic
- trigger warning, this is a big photo
Last edited:
Nightsong
Senior Member (Voting Rights)
Lemogne, Ranque et al have now published on this:
Communicating uncertainty without reinforcing mind-body dualism: lessons from the revision of the French national health insurance ME/CFS webpage (J. Psychosom. Res, October 2026, open access)
"Engel’s biopsychosocial model was intended to overcome the assumption that biological, psychological and social phenomena belong to separate domains."
But here, in the land of cheese, wine and cardiovascular disease, nobody has ever said that.
"For contested medical conditions, uncertainty should therefore be communicated symmetrically.
Candidate immune, metabolic, autonomic, cognitive, or behavioural mechanisms should all be
presented according to the strength of the evidence supporting them. This does not require listing every candidate mechanism."
Especially if there aren’t any
" Public information can acknowledge that several interacting
mechanisms are under investigation, that their relative contribution may differ between individuals, that no single explanatory model is currently sufficient, and that interventions operating at different levels may be useful. "
No, if there isn’t any proven evidence
"This is not merely a question of scientific accuracy. "
Of course it is
" The language used by health authorities influences patients’ expectations, clinicians’ practices and the acceptability of treatment. Negative expectations and contextual cues can also contribute to nocebo effects, which are biologically grounded and well documented across health outcomes [21]."
So, here" science" is accurate?
" Reducing stigma is essential across medicine. However, in many conditions where cognitive or behavioural mechanisms may play a role,
stigma is often reinforced by the assumption that these mechanisms imply voluntariness, personal responsibility or blame. This inference is mistaken: such processes are biologically instantiated and may be no less automatic or outside conscious awareness than immune, vascular or autonomic processes. Conversely, experimental evidence in mental health indicates that biogenetic explanations may reduce blame while increasing prognostic pessimism, potentially narrowing the perceived scope for change and recovery [22]. Protecting patients from blame need not imply denying the possibility that some cognitive and behavioural processes contributing to persistence or recovery are modifiable. Indeed, replacing the message “it is all in the mind” with “it is biological, not psychological” therefore risks simply reversing, rather than overcoming."
But you pointed yourself that your stuff is biological as well, so what??
The ‘Sécu’ is a legacy of the Resistance. It’s a Res Publica, based on solidarity and pragmatism. So Nostradamus at the social security office – I’m not too keen on that.
But here, in the land of cheese, wine and cardiovascular disease, nobody has ever said that.
"For contested medical conditions, uncertainty should therefore be communicated symmetrically.
Candidate immune, metabolic, autonomic, cognitive, or behavioural mechanisms should all be
presented according to the strength of the evidence supporting them. This does not require listing every candidate mechanism."
Especially if there aren’t any
" Public information can acknowledge that several interacting
mechanisms are under investigation, that their relative contribution may differ between individuals, that no single explanatory model is currently sufficient, and that interventions operating at different levels may be useful. "
No, if there isn’t any proven evidence
"This is not merely a question of scientific accuracy. "
Of course it is
" The language used by health authorities influences patients’ expectations, clinicians’ practices and the acceptability of treatment. Negative expectations and contextual cues can also contribute to nocebo effects, which are biologically grounded and well documented across health outcomes [21]."
So, here" science" is accurate?
" Reducing stigma is essential across medicine. However, in many conditions where cognitive or behavioural mechanisms may play a role,
stigma is often reinforced by the assumption that these mechanisms imply voluntariness, personal responsibility or blame. This inference is mistaken: such processes are biologically instantiated and may be no less automatic or outside conscious awareness than immune, vascular or autonomic processes. Conversely, experimental evidence in mental health indicates that biogenetic explanations may reduce blame while increasing prognostic pessimism, potentially narrowing the perceived scope for change and recovery [22]. Protecting patients from blame need not imply denying the possibility that some cognitive and behavioural processes contributing to persistence or recovery are modifiable. Indeed, replacing the message “it is all in the mind” with “it is biological, not psychological” therefore risks simply reversing, rather than overcoming."
But you pointed yourself that your stuff is biological as well, so what??
The ‘Sécu’ is a legacy of the Resistance. It’s a Res Publica, based on solidarity and pragmatism. So Nostradamus at the social security office – I’m not too keen on that.
Last edited by a moderator:
let's be honest, it's a manifesto from psychosomaticists touting for business by trying to tell people that if they haven't got to the bottom of anything yet (or I guess they are trying to instigate, suspect before you've even looked into anything) to keep their area of business top of their list.
And then using sophism to try and camouflage that or make it sound like saying any objection to it is 'stigma' - what to the patient, or to an industry that has no evidence and yet touts for business through gatekeepers by telling them to shove business their way before they've checked someone out properly.
When do we get a version of Godwin's Law that says if someone uses the term 'Dualism' and pretends it is the other way around to what it is then people see thru them for what they are... big pretenders that are a bit desperate for no good intention
bicentennial
Senior Member (Voting Rights)
Um: yes, exactly - it is a Pre-Proof (see the disclaimer below).
As advised and stated - the work in progress is to discover errors, edit and review the copy, which maybe Ameli did not have time to do in view of intense competing claims on social security insurance, health insurance and other insurance - budgets.
Maybe a pyschosomatic journal does not want to do it, or maybe it does do neutral peer reviews. If not there must be a publication elsewhere. There are places for that.
Journal Pre-proof:
"This is a PDF of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability. This version will undergo additional copy editing, typesetting and review before it is published in its final form. As such, this version is no longer the Accepted Manuscript, but it is not yet the definitive Version of Record;
"we are providing this early version to give early visibility of the article. Please note that Elsevier’s sharing policy for the Published Journal Article applies to this version, see: https://www.elsevier.com/about/policies-and-standards/sharing#4-published-journal-article.
(EDIT - This link is now corrected and works)
"Please also note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain."
I have not read this pre-proof. I wonder if the authors picked out all the "premature conclusions about disease mechanisms". Is it now coming to a head, this hefty matter of premature conclusions being copied and pasted across education hubs? On either side of the divide.
Was that the problem raised with the Mayo clinic content which Missing Millions expects to be replaced? How would who know if Mayo content is gone too far?
Do the authors only pick on a PEM-liability denied by like-minds, denied by various insurance providers, and denied by other loading plans imposed? I am still looking for that research paper out of somewhere East of the UK which claimed to "prove" that PEM was not a problem on their exercise program. A very strategic "research".
Ok, where is the PEM evidence being overlooked when libelling a NICE evidence review. Is this France's NICE 2021 moment? With such grudging acknowledgement.
Edit to correct the link for the Journal's ;page on Article-Sharing (policy and standard)
Last edited:
Nightsong
Senior Member (Voting Rights)
Occurs to me that it may be worth bringing this to the attention of journalists - the Sick Times might be interested, as might @dave30th. In-thread links:
Original update
Coverage of the update
The update gets a psychobehaviourally-oriented revision
Diff of the most relevant parts of the pages (English translation)
Full diff of the French, as a PDF
Lemongne, Ranque et al - letter to the editor of the Journal of Psychosomatic Research
Original update
Coverage of the update
The update gets a psychobehaviourally-oriented revision
Diff of the most relevant parts of the pages (English translation)
Full diff of the French, as a PDF
Lemongne, Ranque et al - letter to the editor of the Journal of Psychosomatic Research
Chandelier
Senior Member (Voting Rights)
bicentennial
Senior Member (Voting Rights)
ME/CFS Science Blog
Senior Member (Voting Rights)
I don't think any of the authors have actually done research on ME/CFS, only related conditions such as Long Covid, fatigue or functional disorders. So it's a bit weird to try change medical guidelines on a condition that you haven't actually studied or have expertise in.
Their involvement therefore seems ideologically driven. Some proponents of psychosomatic medicine have got involved in ME/CFS just because this field rejected CBT and other psychosomatic theories. So they feel that this can't be right and feel a need to correct this before it spreads to other fields.
This also seems to be the case here.
Nightsong
Senior Member (Voting Rights)
"During the 2026 National Days of General Medicine (JNMG), held on September 24-25 in Paris, France, Brigitte Ranque, MD, PhD, professor and head, Department of Internal Medicine, Hôpital Européen Georges-Pompidou, Assistance Publique-Hôpitaux de Paris (AP-HP); medical lead, CASPER Unit, Hôtel-Dieu, AP-HP; and professor, Université Paris Cité, Paris, France, discussed how to recognize and manage these disorders."
When and How Can Functional Somatic Disorders Be Treated? (Medscape News, October 2026)
When and How Can Functional Somatic Disorders Be Treated? (Medscape News, October 2026)