News from France

[rvallee]

Not sure if will work without embedding from the bird app, an interview with the president of Afemise:

 

[Axel]

He handles the journalists’ back-and-forth questioning very well, and we learn quite a lot right at the start (that it affects children and teenagers, that some people are bedridden 24 hours a day). The presenter asks a question about CFS and screening: "how do you know if you have it, because after all, lots of people (like us, who wake up early in the morning) are just exhausted?"
I hope he can explain the PEM later in the interview.

 

[Chandelier]

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.

A related tweet by Christoph Ströck from WE&ME:

---

The frustration over how French media are covering ME/CFS after this important policy win is understandable, but unfortunately this is somewhat expected.​

​

We went through the same process in Austria and Germany.​

Changing policy is often only the first step. Advocacy then has to educate journalists about what ME/CFS is, which terminology to use, how to frame the disease, and which images are appropriate.​

​

That takes sustained direct contact, often over one or two years.​

But it can work.​

If France follows a similar trajectory, the large majority of coverage will hopefully become accurate, serious and much closer to the perspective of ME/CFS patients and advocates.​

---

 

[Dolphin]

Apologies if some of these have been posted before:

French state health insurance updates CFS classification

French state health insurance updates classification of chronic fatigue:
Illness is no longer classified as psychological,

Go to,

https://www.connexionfrance.com/new...ates-classification-of-chronic-fatigue/809609

See also (Google-translation from French to English),

https://www-ameli-fr.translate.goog...myalgique?_x_tr_sl=fr&_x_tr_tl=en&_x_tr_hl=en

https://actu-fr.translate.goog/soci...3487.html?_x_tr_sl=fr&_x_tr_tl=en&_x_tr_hl=en

 

[Chandelier]

They talk about biomarkers and pathogenic mechanisms but it became clear early on that the project leaders are part of the BPS crowd and this is what dominated the project. You can read up everything about the project on http://longcovidproject.eu

Long COVID Newsletter 07 | May 2026

Long COVID Newsletter

longcovidproject.eu

„Final“ email newsletter from May 2026, summarising all their findings:

Long COVID Newsletter 07 | May 2026

Long COVID Newsletter

longcovidproject.eu

 

[rvallee]

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.

Un cas particulier : le syndrome de fatigue chronique ou encéphalomyélite myalgique

Le syndrome de fatigue chronique/encéphalomyélite myalgique est responsable d'un épuisement prolongé et de la survenue de malaises après des efforts mineurs.

www.ameli.fr

There have been changes to the page. Mostly seems to be about pacifying the psychobehavioralists. I'd have to do a direct comparison to be sure, but the most obvious is the addition of several sources, all of them bad: the Cochrane review, the main PACE paper, the Oslo gang editorial, a couple of papers with bad recommendations.

I don't remember the recommendation for psychological counseling, on the basis that it can improve symptoms, being there before. I don't remember the recommendation for a structured activity program.

It only took a few days and they watered it down enough to remove what little utility they managed. We can't trust the people handling this illness, we can't trust this industry. They will waste decades doing nothing, but move quickly to undo the smallest bit of good.

 

[Utsikt]

There have been changes to the page. Mostly seems to be about pacifying the psychobehavioralists. I'd have to do a direct comparison to be sure, but the most obvious is the addition of several sources, all of them bad: the Cochrane review, the main PACE paper, the Oslo gang editorial, a couple of papers with bad recommendations.

I don't remember the recommendation for psychological counseling, on the basis that it can improve symptoms, being there before. I don't remember the recommendation for a structured activity program.

It only took a few days and they watered it down enough to remove what little utility they managed. We can't trust the people handling this illness, we can't trust this industry. They will waste decades doing nothing, but move quickly to undo the smallest bit of good.

Ugh, it now has a date of 28.08.26..

However, individualized psychological therapy, the benefits of which are regularly reassessed, can be beneficial to those affected (reduced fatigue, functional impairment, etc.), provided that the professional is knowledgeable about the illness. It must be tailored to each patient and should not consume precious energy or push them beyond their limits, which would worsen their health.

Since when has it been proven that CBT can reduce fatigue or improve functional capacity?

 

[Yann04]

There have been changes to the page. Mostly seems to be about pacifying the psychobehavioralists. I'd have to do a direct comparison to be sure, but the most obvious is the addition of several sources, all of them bad: the Cochrane review, the main PACE paper, the Oslo gang editorial, a couple of papers with bad recommendations.

I don't remember the recommendation for psychological counseling, on the basis that it can improve symptoms, being there before. I don't remember the recommendation for a structured activity program.

It only took a few days and they watered it down enough to remove what little utility they managed. We can't trust the people handling this illness, we can't trust this industry. They will waste decades doing nothing, but move quickly to undo the smallest bit of good.

According to the internet archive it was saved once on August 24 and once on August 30.

So for those who have the capacity/interest definitely possible to compare exact changes I believe.

Wayback Machine

web.archive.org

 

[forestglip]

According to the internet archive it was saved once on August 24 and once on August 30.

So for those who have the capacity/interest definitely possible to compare exact changes I believe.

Wayback Machine

web.archive.org

It looks like the archive bot couldn't save the newer version, but the old version is good. So I could compare it to the version currently on the French website.

I highly recommend the wikEd diff website for comparing text. I used that to compare the French versions, then translated the sections that seemed to have the biggest changes. So this table doesn't include every change.

Before (August 6 version)	After (August 28 version)
Graded exercise therapy, long recommended, is no longer included in recent international, British, or Quebec guidelines. These guidelines advise against offering the following to people with myalgic encephalomyelitis:	Prolonged physical inactivity has harmful effects on physical and mental health (loss of functional capacity and independence, isolation, reduced mobility). However, for individuals with myalgic encephalomyelitis, physical activity that is unsuitable worsens their health status. Therefore, physical activity follows a personalized program with an intensity level selected to avoid exacerbating symptoms (particularly post-exertional malaise). Over time, adjustments to this physical activity—whether increasing or decreasing the level—are necessary to improve physical capacity while respecting individual limits. Consequently, some patients may need to temporarily reduce their physical activity. Regarding physical activity and rehabilitation, recommendations point toward moving away from standardized physical activity regimens. The following should not be considered:
What is the view on cognitive-behavioral therapy for the management of chronic fatigue syndrome? According to the same guidelines, it has not proven effective in curing myalgic encephalomyelitis. It could help support affected individuals, provided the practitioner is knowledgeable about the disease. However, in some cases, it can do more harm than good by depleting precious energy or pushing patients beyond their limits. It is incorrect to assume that the illness stems from the affected person's thoughts or behaviors. Myalgic encephalomyelitis should not be regarded as a psychological disorder.	What is the role of cognitive-behavioral therapy in the management of chronic fatigue syndrome? It is not a cure for myalgic encephalomyelitis. It is incorrect to assume that the disease stems from the affected person's thoughts or behaviors. Myalgic encephalomyelitis should not be viewed as a psychological disorder. However, individualized psychological therapy—with benefits regularly reassessed—can be helpful to those affected (reducing fatigue, functional impairment, etc.), provided the practitioner is knowledgeable about the disease. It must be tailored to each patient and must not deplete precious energy or push the patient beyond their limits, as this would worsen their health.
Some basic principles for implementing "pacing": identify triggers and warning signs of post-exertion malaise; establish safe durations and intensity levels for activities, while remaining attentive to symptoms; set priorities, and accept the need to forgo certain activities and ask for help; break tasks down into smaller steps; alternate between types of activities, as well as between periods of activity and rest; adjust your schedule and environment to better distribute effort throughout the day; improve the ergonomics and equipment of your living space (e.g., minimize moving around the home, install shower grab bars and bath seats, ensure beds and sofas are at a comfortable height, regulate indoor temperature, etc.); incorporate periods of total rest during the day—lying down without any stimulation (no screens, notifications, noise, etc.). Patient associations provide resources to help individuals practice "pacing": "Pacing" method basics from the *Millions Missing* Association "Pacing" guide from the French Chronic Fatigue Syndrome Association (AFSC)	To learn more about "pacing," the French Chronic Fatigue Syndrome Association (AFSC) offers the *Little Guide to Pacing*.

References that were removed:

Mayo clinic. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Site internet : Mayo clinic. Rochester. Minnesota (États Unis d'Amérique) ; 2026 [consulté le 6 août 2026]

References that were added:

Hoffmann K, Hainzl A, Stingl M, et al. Interdisciplinary, collaborative D-A-CH (Germany, Austria and Switzerland) consensus statement concerning the diagnostic and treatment of myalgic encephalomyelitis/chronic fatigue syndrome. Wien Klin Wochenschr. 2024;136(Suppl 5):103–123. doi:10.1007/s00508-024-02372-y.

Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome. Cochrane Database Syst Rev. 2024;12:CD003200. doi:10.1002/14651858.CD003200.pub9.

Kuut TA, Buffart LM, Braamse AMJ, et al. Does the effect of cognitive behavior therapy for chronic fatigue syndrome (ME/CFS) vary by patient characteristics ? A systematic review and individual patient data meta-analysis. Psychol Med. 2024;54:447–456. doi:10.1017/S0033291723003148

Oslo Chronic Fatigue Consortium, Alme TN, et al. Chronic fatigue syndromes : real illnesses that people can recover from. Scand J Prim Health Care. 2023;41:372–376. doi:10.1080/02813432.2023.2235609

Fan et al. 2025 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): diagnosis and management. Journal of translational medicine. doi: 10.1186/s12967-025-07506-y

P D White et al. 2011, Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE) : a randomised trial. doi: 10.1016/S0140-6736(11)60096-2

 

[Utsikt]

This has to be the doing of the lobby. I wonder if it’s possible to figure out who was involved through FOI requests? Is that a thing in France?

 

[wallfish]

Oh. Is there an idiom for "the straw that breaks the camel's back" but instead of the back it's my heart?

How does a team that successfully navigates the controversies and bad science in MECFS to produce version 1 change its mind and adapt it to version 2, including a positive citation of the PACE trial?!

 

[Nightsong]

Just sharing these in case they're useful to anyone interested in the more subtle changes. (No guarantees on the machine translated version.)

 

[Axel]

It’s obvious that these people have no idea what trauma is.
What a dreadful plan!

I think it’s all about lobbying. They weren’t going to let thousands of additional potential clients slip through their fingers.
If it’s not obvious that they’re profiteers living off public money, I’ll say it. They’re trying to do away with traditional psychiatry and palliative care such as spa treatments, in order to promote their robotic protocols.

Most people with ME/cfs have failed to secure disability benefits for this condition, but for something else or not at all, like me, and yet they’re already on the prowl, like vultures.

 

[neophyte32]

This has to be the doing of the lobby. I wonder if it’s possible to figure out who was involved through FOI requests? Is that a thing in France?

Im French and we are sure that it s Lemogne and Ranque s responsabilty.

Who are Cédric Lemogne and Brigitte Ranque, and what is their position on Long COVID and ME/CFS?

To understand part of the current debate in France around Long COVID, ME/CFS, post-exertional malaise (PEM), CBT, and rehabilitation, two names come up repeatedly: Cédric Lemogne and Brigitte Ranque.

They are not physicians operating outside the French public hospital system. On the contrary, they hold important positions within Assistance Publique–Hôpitaux de Paris (AP-HP).

Cédric Lemogne is a psychiatrist and head of the adult psychiatry department at Hôtel-Dieu, AP-HP.
Brigitte Ranque is a professor of internal medicine and head of the internal medicine department at Hôpital Européen Georges-Pompidou, AP-HP.

They are also directly involved in CASPer, the Hôtel-Dieu care pathway dedicated to patients with persistent symptoms, particularly after COVID. On the official AP-HP page describing CASPer, Brigitte Ranque is listed among the program leadership and Cédric Lemogne as the psychiatry lead. The program includes, among others, internists, psychiatrists, psychologists, sports medicine specialists, and adapted physical activity professionals.

Their scientific position is not simply that “Long COVID is imaginary.” That would be a caricature. However, for several years they have defended a biopsychosocial interpretation of Long COVID and have given significant weight to psychological, cognitive, behavioral, and functional mechanisms in the persistence of symptoms.

In 2021, Lemogne and Ranque took part in a French study published in JAMA Internal Medicine involving 26,823 people. It concluded that self-reported belief of having had COVID was more strongly associated with most persistent symptoms than a positive SARS-CoV-2 serology result, with positive serology being statistically associated only with anosmia in their adjusted analysis. The authors discussed, among other things, symptom perception and potentially maladaptive health behaviors. This publication became one of the first major points of controversy.

In 2023, Lemogne, Ranque and colleagues went even further in this direction by publishing an editorial with the explicit title: “Why the hypothesis of psychological mechanisms in long COVID is worth considering.”

In 2024, Lemogne, Ranque and several colleagues published another editorial arguing that a French national committee had not sufficiently acknowledged, in their view, the relevance of a biopsychosocial approach to Long COVID. This time, the concept appeared directly in the title of the publication.

They have also worked on the concept of functional somatic disorders. Lemogne and Ranque co-authored a 2024 paper on mind-body approaches in the management of these disorders. Even more significantly in relation to Long COVID, in August 2026 the CASPer team published a study examining quality of life in Long COVID patients according to whether or not they met diagnostic criteria for a functional somatic disorder (FSD). Ranque and Lemogne were among the co-authors.

The disagreement becomes particularly important when it comes to PEM and deconditioning.

In 2025, Ranque, Lemogne and several co-authors challenged, in Nature Communications, the interpretation of the Appelman and Wüst study showing muscle abnormalities after exercise in Long COVID patients with PEM. They argued that some findings might be related to deconditioning, questioned the interpretation that exercise necessarily caused PEM-specific tissue damage, and proposed an alternative explanation involving an interaction between altered interoception, allostatic load, peripheral influences, and brain function. They also wrote that fear of PEM could lead to symptom-focused attention, avoidance of exertion, further deconditioning, and disability.

This is probably one of the passages that best explains why their approach has generated such strong opposition among some ME/CFS specialists and many patients.

The authors of the original study responded to them directly in Nature Communications. Wüst and colleagues stated that they rejected the deconditioning explanation, emphasizing in particular that physiological differences were observed in patients with PEM even when compared with controls with similar levels of physical activity.

It is therefore important to be precise: Ranque and Lemogne do not necessarily deny the existence of biological mechanisms in Long COVID or ME/CFS. Their position is more nuanced. They argue that these mechanisms should be integrated into a biopsychosocial model in which interoception, symptom-focused attention, expectations, behavior, avoidance of exertion, deconditioning, and functional mechanisms may play an important causal or perpetuating role.

This is precisely the framework that is challenged by part of the current research on PEM and ME/CFS, which instead argues that reduced activity is primarily a consequence of exertion intolerance and PEM, rather than their cause, and that describing avoidance of exertion as a mechanism maintaining the illness risks leading to inappropriate treatment approaches.

Finally, their connection to AP-HP is important to keep in mind: we are not simply talking about two researchers expressing an academic opinion. Lemogne heads an AP-HP psychiatry department, Ranque heads an AP-HP internal medicine department, and both are directly involved in the Hôtel-Dieu CASPer pathway for persistent symptoms and Long COVID. Their school of thought therefore has a real institutional foothold within the French Long COVID care system.

This does not prove, of course, that they alone determine AP-HP policy or the position of the French national health insurance system. And regarding the recent changes to the Ameli page on ME/CFS, I have not found any evidence showing that they personally intervened in its drafting or modification. It would therefore be going too far to make that claim.

What can be stated factually, however, is that some of the wording surrounding CBT, rehabilitation, deconditioning, and functional improvement belongs to a scientific debate in which Ranque and Lemogne have been actively involved for several years, with a clearly identifiable and extensively published position.

 

[V.R.T.]

In 10-20 years nobody will be able to believe the brazeness and impunity with which the psychobehaviouralists acted.

 

[neophyte32]

In 10-20 years nobody will be able to believe the brazeness and impunity with which the psychobehaviouralists acted.

In France, patient associations and we, the patients ourselves, know that Ranque and Lemogne exerted pressure.

 

[Chandelier]

In 2021, Lemogne and Ranque took part in a French study published in JAMA Internal Medicine involving 26,823 people. It concluded that self-reported belief of having had COVID was more strongly associated with most persistent symptoms than a positive SARS-CoV-2 serology result, with positive serology being statistically associated only with anosmia in their adjusted analysis. The authors discussed, among other things, symptom perception and potentially maladaptive health behaviors. This publication became one of the first major points of controversy.

Association of Self-reported COVID-19 Infection and SARS-CoV-2 Serology Test Results With Persistent Physical Symptoms.., 2021, Matta et al

In 2023, Lemogne, Ranque and colleagues went even further in this direction by publishing an editorial with the explicit title: “Why the hypothesis of psychological mechanisms in long COVID is worth considering.”

Editorial: Why the hypothesis of psychological mechanisms in long COVID is worth considering, 2023, Lemogne et al

In 2024, Lemogne, Ranque and several colleagues published another editorial arguing that a French national committee had not sufficiently acknowledged, in their view, the relevance of a biopsychosocial approach to Long COVID. This time, the concept appeared directly in the title of the publication.

National committee statement as a missed opportunity to acknowledge the relevance of a biopsychosocial approach in understanding [LC], 2024, Lemogne+

They have also worked on the concept of functional somatic disorders. Lemogne and Ranque co-authored a 2024 paper on mind-body approaches in the management of these disorders.

Psychocorporal approach to functional somatic disorders 2024 Kachaner, Lemogne and Ranque

Even more significantly in relation to Long COVID, in August 2026 the CASPer team published a study examining quality of life in Long COVID patients according to whether or not they met diagnostic criteria for a functional somatic disorder (FSD). Ranque and Lemogne were among the co-authors.

The disagreement becomes particularly important when it comes to PEM and deconditioning.

Health-related quality of life among patients with long COVID according to the presence of a diagnosis of functional somatic disorder 2026 Gourard+

In 2025, Ranque, Lemogne and several co-authors challenged, in Nature Communications, the interpretation of the Appelman and Wüst study showing muscle abnormalities after exercise in Long COVID patients with PEM.

Link to post.

 

[Lou B Lou]

In 10-20 years nobody will be able to believe the brazeness and impunity with which the psychobehaviouralists acted.

That's what I thought 20 years ago.

 

[V.R.T.]

That's what I thought 20 years ago.

And it's horrendous that nothing has changed. Honestly it beggars belief. It's like why do we tell children the story of The Emperor's New Clothes and then let something like this unfold for generations.

 

[NelliePledge]

Did the organisation make an announcement that the new pages were being published? If so it is a good question for Parlamentarians to formally ask why it was changed so soon after publication and why, how the changes were announced.