ME/CFS Science

6) Homebound patients could participate in social media in the protest and follow a livestream of the gathering in Den Hague. This can be rewatched here:
www.hetpaisprotest.n...

Kudos to the organizers #NIETHERSTELD

5) During the protest, there were several moving speeches and testimonies from family members of patients. Professor of Philosophical Ethics Vivienne Matthies-Boon gave some historical background on how these conditions have been overlooked within the medical system.

667 dagen in het donker: hoe postcovidpatiënten uit de maatschappij verdwenen Ze leven achter gesloten gordijnen, aan bed gekluisterd. Voor de allerziekste postcovidpatiënten in Nederland is er nog steeds geen passende hulp of zicht op genezing. Vier van hen gunden ons een blik in hun leven, hoe hoog de prijs ook was die ze daarvoor moesten betalen.

4)This article in the Volkskrant, for example, writes about severe patients who are mostly bedbound and lie in a silent, darkened room. It was highlighted on the front page of the newspaper.

3) The collaboration between these different but similar patient groups seems to have been a big success. Multiple articles and interviews appeared in the national press and TV broadcasts, highlighting the need for improved care and research.

2) PAIS stands for post-acute infectious syndromes and groups neglected illnesses such as ME/CFS, Long Covid, Q-fever fatigue syndrome, chronic Lyme disease, Post-sepsis, etc.

Patients got an infection and never fully recovered.

1) No new research papers today, so we wanted to share some info from the big PAIS protest in the Netherlands on Sunday. It had a big turnout and reached the national press.

5) Link to the (open-access) paper:

Nemat-Gorgani et al. 2025. Glymphatic System Dysregulation as a Key Contributor to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
www.mdpi.com/1422-00...

4) Besides antibodies targeting AQP4, the paper also talks about abnormal cerebral blood flow, low-grade neurinflammation, and oxidative stress as potential mechanisms that may disrupt the glymphatic system in ME/CFS.

3) In particular, the authors speculate that ME/CFS patients might have antibodies against the AQP4 water channels.

AQP4 proteins are expressed at the membrane of astrocytes throughout the central nervous system and facilitate the exchange of fluids in the brain.

2) The glymphatic system helps to clear waste products from the brain, similar to the lymphatic system elsewhere in the body. It assists with various clean-up processes, especially during sleep.

So ME/CFS could be due to a failed clean-up/reset problem in the brain.

1) Interesting new hypothesis paper by the team of Ron Davis.

They suspect that the recently discovered glymphatic system (the 'lymph nodes' of the brain) plays a role in ME/CFS pathology.

Interesting thread about fatigue a symptom that is extreme in many cases of ME/CFS but it is also present in any #autoimmunedisease - What surprises me is the lack of attention to hormones, vitamins and minerals levels

6) Link to the Swedish study:

Lindblom et al. Prevalence of depression, anxiety, fatigue, and headache before and after long COVID onset: a case-control study in the total population of Region Stockholm.
pubmed.ncbi.nlm.nih....

5) This aligns with other studies, finding that many symptoms such as fatigue, headache, chest pain, dyspnea, and sleep disorders were more common in LC patients before their LC diagnosis.

See, for example:
onlinelibrary.wiley....

4) So a more plausible explanation is probably that having these symptoms makes it more likely to get a diagnosis of Long Covid, either because the baseline symptom burden is higher, or because patients who already have these symptoms are more likely to seek medical care for LC.

3) It looks, however, that anxiety and depression aren't unique in this regard, but that many other diagnoses and symptoms, including headache, post-viral fatigue syndrome, and respiratory diagnoses, were more common in Long Covid patients before SARS-CoV-2.

2) One option is that these mental health conditions create a susceptibility to developing Long Covid. The authors discuss this and mention not only psychosocial factors but also low-grade inflammation as a potential mechanism.

1) 🇸🇪 A database study from Sweden reports that patients with a registered Long Covid had higher rates of depression and anxiety in 2019 (before Sars-Cov-2) than controls.

There are, however, several possible explanations for these findings.

3) Contact PI is Vincent Lombardi. More information about the project, which runs from 2024 to 2026, is available here:
reporter.nih.gov/sea...

Link to the abstract:
academic.oup.com/jim...

2) This was recently published in The Journal of Immunology by Katherine Gabrie from the University of Nevada. Only an abstract is available but the project received funding from the NIH.

1) From an new abstract:

"We hypothesize that by conducting a fecal microbiota transplantation (FMT) with stool from ME/CFS cases into mice that are engrafted with a functional human immune system, we can develop an animal model that will replicate ME/CFS-associated pathology."

A persistent viral infection is one that lasts the lifetime of the host, and humans harbor multiple such infections. In this lecture we discuss the mechanisms and consequences of viral persistence, illustrated with examples of measles virus, polyomaviruses, hepatitis B and C viruses, and herpesvirus Virology Lectures 2024 #17: Persistent Infections

Interesting lecture on persistent infections by Prof. Vincent Racaniello.

Goes through many examples such as Herpes simplex, Hepatitis B and C, Ebola, SSPE in measles, Varicella-zoster, and EBV.

5) The presentation by Peluso was at the Fall symposium of Polybio and can be watched here:
polybio.org/fall-202...

More info about the Project can be found here:
polybio.org/projects...

4) Many of the complex analyses, such as immune phenotyping, imaging, and virology, will be supported by top experts from other Polybio collaborations.

CHIME hopes to start in January 2026 with in-person meetings in San Francisco.

3) The study will also collect various questionnaires such as FUNCAP and objective measures including neurocognitive testing grip strength, an active stand, EndoPAT (for endothelial dysfunction), and home sleep testing.

2) CHIME stands for 'Chronic Infection and Inflammation in ME/CFS' and is funded by PolyBio.

Much of the rationale for the study stems from John Chia's work on persistent enteroviruses in ME/CFS. CHIME wants to check if these results can be replicated using newer technologies.

1) Dr. Michael Peluso will lead a big ME/CFS project called CHIME.

The infrastructure first built for HIV, then used for Long Covid in the LIINC study, will now also help with studying pre-pandemic ME/CFS

The research will focus on gut biopsies and PET-CT scans.

Medscape logo Medscape Medical News Conference News IACFS/ME 2025 How to Help With ME/CFS and Long COVID Disability Claims Miriam E. Tucker November 26, 2025 Detailed notes, objective testing, and legal assistance if necessary are the keys to obtaining disability benefits for patients who are unable to work due to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or long COVID.

"How to Help With ME/CFS and Long COVID Disability Claims"

www.medscape.com/viewarticle/...

Lots of good tips to deal with insurance companies.

Government schemes can vary by country but people in most countries can probably pick up useful tips from this also.

#MEcfs #LongCovid #CFS #PwME

Good overview

OMF Home - Open Medicine Foundation ME/CFS & Long COVID are life-altering illnesses. Together, we can move research further, faster.

8) You can support OMF's work by donating using this form:
www.omf.ngo/?form=do...

All donations to OMF are tripled until December 2, 2025.