1) We wrote a new article on cell and tissue analysis using genetic data. For ME/CFS, the results strongly point to neurons. One of the top hits is the medium spiny neuron, located in a region deep inside the brain called the striatum.

Heftig verhaal van Caroline van Kessel, voorzitter van Q-uestion over haar ervaring met QVS. archive.ph/202607191747... #QVS #pwme #LongCovid #PAIZ #PAIS #millionsmissing

open.substack.com/pu... The loud debate surrounding brain-retraining approaches to PAIS incl. ME/CFS, is difficult on many levels. The events surrounding Basel gave me cause to undertake a literature review on the subject, and it’s this text, among others, 1/2

What if movement didn't have to be big to matter? Unbound is a film woven from 20 bodies, 20 stories, and 1 thread of connection. Join us for the premiere on July 29th at 6:30 PM ET. www.eventbrite.com/e/unbound-gl... A reflection on my process for this film on my blog: liapas.com/2026/07/11/u...

"This virus–virus interaction framework provides a plausible mechanistic explanation for the biology of chronic post-viral disease and highlights herpesvirus reactivation as a potential target for biomarker development and therapeutic intervention." www.cell.com/trends-open/...

1) A new tone deaf #CBT for #LongCOVID study based on graded activity. Patients reported a modest, temporary reduction in fatigue right after therapy, but that benefit completely vanished by the three-month mark. Meanwhile, the treatment failed to show www.sciencedirect.com/science/arti...

"Which aspects of the intervention were reported to be most useful? In that regard [...] participants were most likely—by far—to pursue “pacing.” [...] the most popular strategy paralleled the standard patient-promoted advice geared toward preventing PEM: Don't overdo it!"

Another article about the Dutch study that found reduced or missing CRH neurons in the brain of #pwME. I wasn't aware there were autopsies also being done in Long-Covid. Hopefully the findings will be replicated!! #LongCovid #millionsmissing #severeME www.dmz-news.online/2026/07/12/m...

Interesting preliminary study shows that people with #LongCOVID have actual damage to the vagus nerve fibers that normally control the stomach. When they looked at stomach biopsies, they found far fewer nerve fibers, especially the cholinergic (vagal) ones, compared to HC.

Goed interview met Piet Gaarthuis over de Ongebroken tentoonstelling en ME in z'n geheel. Zoveel kennis voor iemand die zelf niet ziek is. Wat zou het wat zijn als artsen ook zo goed geïnformeerd waren... Oh, en ja, IDFA here I come! 😊 www.salto.nl/player/radio... #pwme

Indrukwekkend verhaal van Etty die ziek werd toen ze 9 was en nu 72 is. Hoe het jarenlang een gevecht is geweest om serieus genomen te worden. nmcb.eu/stories/etty...

Curious if this is also the case in #pwME. Purely based on the clinical picture it is. www.eurekalert.org/news-release...

Reflections from the organiser following an art exhibition in the Netherlands on ME. meglobalchronicle.wordpress.com/2026/06/12/u... #MyalgicEncephalomyelitis #MEawareness #MEcfs #PwME @anilvanderzee.bsky.social

"Het kabinet dreigt de financiering voor onderzoek naar postcovid stop te zetten. En dat terwijl er honderdduizenden patiënten nog steeds zonder behandeling zitten. Uit wanhoop experimenteren patiënten met schijnbehandelingen." www.ftm.nl/artikelen/ho...

Thanks everyone for the birthday wishes and donations! 💙💙❤️❤️

Today is my birthday... Please have a read. 📖💙🙏 Nederland: www.doneeramsterdamumc.nl/mecvs International: US: www.omf.ngo Germany: mecfs-research.org Austria: www.weandmecfs.org UK: donate.justgiving.com/charity/merg... #pwme #myalgicE #millionsmissing #severeME

Belangrijke boodschap! Dringend nodig om minstens één professionele scepsis bij onderzoek te betrekken. "Patiënten kunnen schade ondervinden van onjuiste bevindingen die desondanks hun weg vinden naar richtlijnen, aanbevelingen en klinische trajecten." bit.ly/4eAgXh5

This pacing‑based rehabilitation and management study showed that right after the 5‑week rehab stay, 45 percent of patients were worse on the Bell Disability Scale, and only 14 percent improved. 😩  Another rehabilitation study bites the dust… #pwme #myalgicE papers.ssrn.com/sol3/papers....

Which has been harming people with IACI and progress already for decades. fair.org/home/media-w... #LongCovid #pwme #myalgicE #PAIS #IACI #IACC

Een mooie reflectie van Piet Gaarthuis over de Ongebroken tentoonstelling. Het was een eer om mee te mogen doen. wp.me/p8PTny-asN

I thought “perspectives” might refer to opinions, but it means visual perspectives. There is no speech so people anywhere can watch it easily. #mecfs #cfs #pwme #severeme

In 2009 Bert was infected with Q fever/QFS. He became severely ill and joined hundreds of other patients in a long legal fight against the Dutch State for recognition and compensation. More than ten years later, their struggle is still not over. #qfs #qvs #pwME #pais #IACI

Very cool short film about ME by young filmmakers with some unconventional perspectives. Check it out! #pwme #myalgicE #millionsmissing #severeME youtu.be/rqNQb_hmL20?...

Wow, I don't think I've ever seen this before! In Austria there is a government concept on how those affected by ME can receive better care. But it has not yet been approved. In this clip, 4 former health ministers appear to advocate for the issue. #pwme on.orf.at/video/143274...

Klinisch psychologen Klaas Huijbregts & Luuk Stroink waren te gast bij een podcast waar ze specifiek over CGT & de rol van psychologen bij ME/ #PAIS spraken. ggnet.nl/podcast/podc... Ik heb hier een korte reactie op geschreven: docs.google.com/document/d/1... #pwme #LongCovid #mecvs

Not about ME, but an important article, but sad a 15 year old with a disability even has to write this... www.theguardian.com/commentisfre...

"Post-Covid – When doctors themselves develop #MECFS" PS: haven't listened myself yet. www.deutschlandfunkkultur.de/post-covid-w...

"Anil deelde op 12 mei – Wereld ME-dag een korte interessante film van acht mannen die vragen beantwoorden over hoe het is om te leven met ME. Uniek, aangezien ME een ziekte is die voor het merendeel vrouwen treft, Mannen met #myalgicEman #pwme #myalgicE #millionsmissing 1/

🗣️ Minister in gesprek met PAIS-patiënten Op dinsdag 9 juni gingen patiënten en naasten van patiënten met verschillende post-acute infectiesyndromen (PAIS), waaronder long covid, ME en Q-koorts vermoeidheidssyndroom, in gesprek met minister Sophie Hermans. 🧵1/9

Trial By Error: Nederlands agentschap financiert #CGT-trainingsprogramma gebaseerd op gebrekkige studie naar #LongCovid www.me-gids.net/nieuwsartike...

English subtitles have been added to the care clinic for people with severe ME and very severe ME in Norway. youtube.com/watch?v=-KX1...

GLP-1 RAs - Hype, Hope and Hidden Dangers A rare published presentation from the colloquium, Dr Steve Gardner of PrecisionLife on GLP-1 receptor agonists and what the science means for ME. youtube.com/watch?v=LFI_...

David Tuller about the Wired article by Alan Levinovitz. *Levinovitz calls for robust research into mind-body interventions. But he fails to mention two major clinical trials that pertain directly to his argument—a perplexing omission." virology.ws/2026/06/09/t...

My first post about that Wired piece: virology.ws/2026/06/09/t...

Interessant stuk door Gorm Palmgren over onderzoek van Chris Ponting en Ian Lipkin. De omschrijving van ME zou iets beter gekund hebben, maar verder niet slecht voor Nederlandse begrippen. #pwme #myalgicE #millionsmissing wibnet.nl/gezondheid/o...

"Low-dose naltrexone (LDN) failed to outperform placebo in reducing pain or improving secondary outcomes in women with fibromyalgia, according to data presented at the European Alliance of Associations for Rheumatology (EULAR) 2026 Annual Meeting." www.medscape.com/s/viewarticl...

'There’s an awful lot of work to be done to figure out what the exact protein targets are of the autoantibodies and what sets off their production in susceptible individuals. Ideally insights into that might help you identify such people prospectively.' www.science.org/content/blog...

Doctor with 2 children who have Long-Covid criticizes the Wired article and also started a petition. www.reddit.com/r/covidlongh... #LongCovid #LongCovidkids #kidswithME #pwme #millionsmissing

They call us obstacles to progress. I’m enrolled in the research. My response to WIRED’s “The Painful Truth About Long Covid.” darthfoo.substack.com/p/the-patien... #LongCOVID #MECFS #Wired #PEM #CBT #GET

It should’ve been quite easy to find one. In a survey of 1,096 patients by the Norwegian ME Association, 50% reported getting worse after the Lightning Process. 25% became seriously worse. www.me-foreningen.info/wp-content/u...

The Wired article features several personal recovery stories from people who say brain retraining helped them. But I couldn’t find any comparable personal accounts from people who say these programmes didn’t work, or made them worse. Here is one from a German TV documentary.

"Patients who were NOT IMPROVED were more likely than those IMPROVED to have neuropathy, gastroparesis, and overactive bladder symptoms." #pwme #myalgicE #millionsmissing onlinelibrary.wiley.com/doi/10.1111/...

WHO Europe Director Dr. Hans Kluge said at this year’s Invest in ME conference: “ME is a severe multisystem physical disease!”. www.instagram.com/reel/DZKJrvs... #pwme #myalgicE #millionsmissing

Shoutout to some excellent German psychologists working on #LongCovid - check out the link for who they are

1) This video shows a unique care unit in Norway called Røysumtunet for people with #severeME & very severe ME. It is one of the only places where the sickest patients can receive specialised care. We need this everywhere!! #pwme #myalgicE #millionsmissing #severeME

Pity the author didn't review the negative studies in PAIS. Brain Retraining doesn't work. New preliminary data from the AIR trial is a good example. The effect is similar to natural recovery & fluctuations of the disease. Gupta scored even a bit worse than TAU. www.linkedin.com/posts/me-cfs... 🧠

🧵OF KEY CONCERNS We've now read Alan Levinovitz's WIRED piece on Long Covid. Our concern isn't that it discusses psychological theories. Our concern is that it repeatedly conflates criticism of evidence with creating a "climate of fear". Those are not the same thing. /1

1) This paper provides the a structured, transdisciplinary care guide for people with #severeME in home settings. The guide fills a major gap in professional knowledge and supports both family caregivers and health professionals in delivering safe, stabilizing care for people with severe ME.

Since April, Salzburg has been home to Austria's first nationwide outpatient clinic for #pwME. From the get go there are many patients who are looking for treatments. It shows how people are desperate for treatments. on.orf.at/video/143251... #LongCovid #millionsmissing

Last May, a team of researchers led by Braeden Charlton and including ME Research UK-funded researcher Associate Professor Rob Wüst published a pre-print paper, which made a case against deconditioning as a primary cause of ME/CFS symptoms. Read more: tinyurl.com/3zntm88j #mecfs #cfs #pwme