Expert perspectives on [ME/CFS] – Insights from the 3rd International Conference of the Charité Fatigue Center, 2026, Fehrer et al

[Nightsong]

Abstract:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, multisystemic disorder mostly triggered by viral infections, with core symptoms including post-exertional malaise (PEM), fatigue, pain, and cognitive dysfunction. Its prevalence has increased significantly in the context of the coronavirus disease 2019 (COVID-19) pandemic. Despite its severity and impact on patients' quality of life, ME/CFS remains poorly understood.

On May 12 and 13, 2025, the 3rd International Conference hosted by the Charité Fatigue Center brought together nearly 200 researchers from various disciplines on-site, and around 3,700 participants online to discuss recent advances in ME/CFS research, diagnostics, clinical care, and therapeutic trials. The program featured 33 lectures by international experts on key topics such as post-COVID syndrome (PCS), care structures, and pathophysiological mechanisms including cardiovascular dysregulation, immune dysregulation, autoimmune mechanisms, and metabolic dysfunction. In addition, results from clinical trials addressing disease mechanisms, including those specifically targeting autoantibodies, were presented.

While public awareness and funding opportunities have increased in the wake of the pandemic and the emergence of PCS, ME/CFS remains severely underresearched. Sustained and adequately funded research efforts are urgently required to advance understanding, identify diagnostic markers, and develop targeted therapeutic interventions.

Link | PDF (Autoimmunity Reviews, March 2026, open access)

 

[Utsikt]

I can’t find any mention of this on the forum:

Claudia Kedor introduced the CFS_CARE study at the Charité Fatigue Center in Berlin, Germany, which investigated the effectiveness of an interdisciplinary care model for patients fulfilling the CCC for diagnosis of ME/CFS [49].

Interventions included diagnostic assessments, and personalized therapy such as pacing, sleep and pain management, nutritional guidance, and social support, aiming to ameliorate symptoms and improve physical health and occupational participation.

A total of 240 ME/CFS patients with a disease duration between 6 months and 5 years were randomly assigned to an intervention or a matched control group. Therapeutic implementation included a 5-week stay at the Bavaria Kreischa rehabilitation clinic, and regular evaluations at the ME/CFS outpatient clinic for the intervention group, while controls remained under the care of the referring physicians.

Although the rehabilitation program was tailored to ME/CFS with pacing and individualized flexibility, over 50% of patients reported experiencing a PEM episode during their stay. A total of 77% felt that their condition had improved as a result of the rehabilitation, and 74% reported feeling more capable of coping with their illness.

Despite this positive assessment, preliminary results indicate that physical functioning assessed via the Short Form 36 (SF-36) health survey did not improve at 12 months [50]. These findings suggest that rehabilitation programs are not universally beneficial for individuals with ME/CFS, and that symptomatic therapy has no significant impact on the clinical course of the disease.

A comprehensive analysis of the study is currently ongoing to identify patient subgroups more likely to benefit from rehabilitation interventions as well as those for whom such interventions may be contraindicated or ineffective.

Seems to be another nail in the coffin for rehab.

From the protocol:

Interventions, Observational Groups​

Arm 1:In the intervention arm, patients receive extended diagnostics and therapy in the form of five-week inpatient rehabilitation. The patients in the intervention arm are expected to be admitted for rehabilitation from March 2022 on a specialized ward at the Bavaria Clinic in Kreischa (Saxony, Germany).

The rehabilitation program, which can be put together according to the modular principle, is based on the current status of the person undergoing rehabilitation. Each program consists of various modules that can be combined in different ways as basic and elective modules. The range of therapies includes:

1. Training courses and seminars
2. Individual and group therapies
3. Recreation
4. Perspectives for everyday life and work
5. Professional reintegration

Endpoints​

Primary outcome:
health-related quality of life (SF-36) at 12 months

Secondary outcome:
ability to work (able to work yes/no, sick days);
health status (Bell scale, SF-36);
symptoms (Chalder Fatigue Scale, CCC criteria, COMPASS, IPAQ, EQ5D, PHQ9, ESS);
physical or apparatus functional parameters (hand strength, number of steps, activity, orthostasis, vascular function)

Results from Twitter:

https://nitter.net/GrandeBettina/status/1921864132078313842

No effect.

https://nitter.net/AnilvanderZee/status/2015515466098246113

44 % worse, 13 % better according to the Bell scale.

 

[NelliePledge]

Those seem like important results just like PACE showed ineffectiveness of the approach this seems quotable to me for pushing back on rehab thinking.