iiinova — where your digital self keeps evolving

Reposted by Yann (ME/LC)

George Monbiot @georgemonbiot.bsky.social · 21/09/2026

Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers: Are any of you still being offered inappropriate (psych/GET etc) "treatments"? Please email george at monbiot dot info. Thanks.

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Emerge Australia @emergeaustralia.bsky.social · 10/08/2026

If you live with #MECFS or #longCOVID in Australia, Edith Cowan University and #EmergeAustralia invite you to take part in a confidential online survey. What you share can help improve understanding, care, support and future research. Take part: eaecu.au1.qualtrics.com/jfe/form/SV_... #countME

Emerge Australia Count ME graphic showing a woman sitting on a couch using a smartphone. Text reads: “National ME/CFS & long COVID Survey. Help shape ME/CFS and long COVID priorities and care in Australia.”

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Reposted by Yann (ME/LC)

C.H. Romatowski @chromatowski.bsky.social · 21/08/2026

The org Got Long Covid?, in conjunction with the Los Angeles Department of Public Health, is running a survey on Long Covid experiences to inform LA’s LC response! Please share with LA friends! usc.qualtrics.com/jfe/form/SV_...

This survey is for residents of LA County impacted by Long COVID + related conditions, including:
• People living with Long COVID
• Caregivers + parents to adults or children with
Long COVID*
• Healthcare providers and researchers
• Allies, advocates and community organizers

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ME/CFS Science @mecfsscience.org · 24/08/2026

7) My personal comments: I think many other patients feel the same way as Anil. A lot is happening in ME/CFS research and advocacy but too much rests on the shoulders of a couple of individuals who give everything they've got. We need more people to step up and take action.

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Tom Kindlon @tomkindlon.bsky.social · 18/08/2026

Petition:Take urgent action so those with Severe #MyalgicEncephalomyelitis in Wales are no longer left without vital medical care petitions.senedd.wales/petitions/24... Screenshot: Science for ME update #MEcfs #PwME @wamesmecfs.bsky.social @severemecymru.bsky.social @longcovidsupport.bsky.social

UK Wales Petition Take urgent action so those with Severe Myalgic Encephalomyelitis in Wales are no longer left without vital medical care
"We urge the government to implement both immediate and long-term support for those in desperate need." Co-produced by: SMEDC, WAMES, AfME, LC Support.
Demands include appointment of clinical leads and development of a delivery plan.
Petition | Thread

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Yann (ME/LC) @me-cfs.bsky.social · 18/08/2026

Petition from Nidwalden (Switzerland) asking accomodations to be made for pwSevereME in the application process for disability insurance (AI/IV)

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Mirja Nicolas @privilegienschreck.bsky.social · 13/08/2026

Ein journalistisches Team recherchiert übrigens aktuell zu Fällen, "in denen Eltern medizinisch komplexer Kinder unter den Verdacht geraten, ihr Kind absichtlich krank zu machen, häufig unter Begriffen wie „Münchausen by Proxy“". app.crowdnewsroom.org/crowdnewsroo...

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Yann (ME/LC) @me-cfs.bsky.social · 10/08/2026

There’s a serious petition going around to get them to pause the trial until an ethics review and ensuring the trial design isn’t engineered to give positive results no matter what.

change.org

Sign the Petition

Long COVID Patients Deserve Better: Pause McMaster’s FALCON Lightning Process Trial

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ME/CFS Science @mecfsscience.org · 05/07/2026

1) An overview of positive developments in ME/CFS research 👇 The European Union awarded €7.5 to a ME/CFS consortium that will conduct multi-omics and test biomarkers in hundreds of patients. It will connect and harmonize five biobanks across the continent. bsky.app/profile/mecf...

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Yann (ME/LC) @me-cfs.bsky.social · 04/07/2026

It took me over 2 months to watch this video, a minute or so every couple days. On 0.4 speed. In black and white. No sound, only subtitles. I still probably overdid it. Perhaps that’s a testament to how severe ME/CFS can get. But i just wanted to share it because it’s really really excellent.

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Sam @humanmanifold.bsky.social · 10/06/2026

Petition to retract the irresponsible pseudoscientific article about #LongCovid in WIRED: www.change.org/p/wired-maga...

change.org

Sign the Petition

WIRED Magazine, Retract "The Painful Truth About Long Covid"

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Yann (ME/LC) @me-cfs.bsky.social · 24/06/2026

Landlord won‘t let me install AC in the only way that‘s accessible to me. So this week I‘ve been cooking. Top floor appartment + Urban heat island + massive concrete building heat sink means despite flushing windows night time temps aren‘t dropping below 27 C.

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ME/CFS Science @mecfsscience.org · 23/06/2026

1) 🇳🇿 A survey in New Zealand among 333 ME/CFS and Long Covid patients found that half of the respondents had experienced food insecurity in the past 12 months.

Table 3. Prevalence of food insecurity in the previous 12 months, according to disease severity, among 333 people with ME/CFS or Long Covid.

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Richard Vallée @richardvallee.bsky.social · 12/06/2026

If you think that medical research is expensive, wait until you find out how expensive denial is. Literally paying more for worse outcomes for everyone but if you never see the bill it doesn't feel real. Leeroy Jenkins-ass policy.

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Chantzy @chantzy.bsky.social · 03/06/2026

Cw: suicide A post in the long-haulers subreddit reports a woman in Vancouver, Canada died recently of suicide after years of struggling with Long COVID and having her symptoms dismissed & psychologized by all around her ❤️‍🩹 www.reddit.com/r/covidlongh...

reddit.com

From the covidlonghaulers community on Reddit

Explore this post and more from the covidlonghaulers community

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Anil van der Zee @anilvanderzee.bsky.social · 02/06/2026

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

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ME/CFS Science @mecfsscience.org · 22/05/2026

1) Interesting blog by Siebe: - "How I learned to doubt a paper" He explains how he gradually became more skeptical of claims on ME/CFS and Long Covid in scientific publications and learned to focus on methodology, replication, statistical analysis etc.

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Michael Stingl @neurostingl.bsky.social · 14/05/2026

Erinnerung an diese wichtige Petition zum #ME/CFS Aktionsplan. Wenn die Stimmen der Betroffenen bei diesem bisher in Gesundheits- und Sozialsystem jämmerlich gelöstem Problem nicht gehört werden, ist die Gefahr groß, dass aktuelle Missstände perpetuiert werden. www.openpetition.eu/at/petition/...

openpetition.eu

PAIS-Aktionsplan ohne Betroffene: Diese Mindestanforderungen müssen im Aktionsplan verankert werden - Online-Petition

Wir fordern die Bundesregierung, die Bundesländer und die Sozialversicherungsträger auf, im Aktionsplan zu postakuten Infektionssyndromen (PAIS) zentrale Mindestmaßnahmen rasch und verbindlich zu vera...

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Simon McGrath @simonmcg.bsky.social · 18/05/2026

4 key things about the new £4.7m ME/CFS DNA study DNA uses 4 chemical letters — A, T, G and C — to encode the instructions to build and run a human. The genome contains 3 billion of these letters. 1️⃣ This study uses full genome sequencing to read all of them, while DecodeME…

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Yann (ME/LC) @me-cfs.bsky.social · 12/05/2026

This is monumental news. Apparently the 6000 whole genome sequencing (WGS) samples funded here is the largest WGS Genetic Study of a single illness to date. This feels very symbolic, ME/CFS Research going from lagging decades behind to being on the cutting edge. Hopefully this is a turning point.

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Richard Vallée @richardvallee.bsky.social · 24/04/2026

It's 2026 and sick people still have to resort to protesting against mass negligence from the medical profession. Because absolutely nothing was learned from the AIDS crisis. What these people are doing to millions is violence, and they have the full support of their peers and governments.

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Didier @medidier.bsky.social · 04/05/2026

No, when severe, you exist even without that, without your soul. It goes beyond suffering, we are deprived of not only bodily functions, our identity, or the things that give 'meaning' to our life... we are also deprived of what makes us a thinking person - while still awake to witness it. 2/2 #ME

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Yann (ME/LC) @me-cfs.bsky.social · 03/05/2026

I don’t think even most advocates and pwME understand how profoundly limited in options you are at extremely severe. All coping mechanisms make your situation worse in the long term. All you can do is lay completely still in the dark all alone with all senses blocked, not thinking anything. 1/3

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Emma 🛏️♿🌱☮️♻️🍉 @veganmua.bsky.social · 16/01/2026

New Medicaid work requirements will take effect at the end of 2026 - it will FAIL sick people and cut off their care. Tell HHS to recognize people with #MECFS and #LongCOVID as “medically frail” so our access to Medicaid is protected. Sign TODAY: actionnetwork.org/petitions/fr...

actionnetwork.org

Protect Medicaid for People with ME/CFS and Long COVID

New Medicaid work rules will take effect at the end of 2026. Our care and support systems have long been rigged against disabled people, and these new paperwork rules will push even more sick people o...

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Yann (ME/LC) @me-cfs.bsky.social · 01/05/2026

Victoria Australia, volunteer women with LC and ME/CFS (+ Healthy controls) needed for a bio study into the illnesses. #MEAus

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Something Chronic @somethingchronic.bsky.social · 30/04/2026

There was a great man called Dave Who was #pwME ‘s fave He stood up for them When they had PEM Please donate in memory of Maeve #GreatestMEdicalScandal #SevereME #MaeveInquest

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ME/CFS Science @mecfsscience.org · 27/04/2026

1) A new study estimated the disability and prevalence of Long Covid and compared it to NIH research funding. Long Covid should receive $740 million per year, but it only gets 14%-50% of that amount, depending on how you count. ME/CFS only gets 1% of its proportional funding...

NIH funding for Long Covid is not in proportion to its estimated years lived with disability.

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David Tuller @davetuller1.bsky.social · 26/04/2026

With 10 days left, closing in on 300 donations. I think I've provided a good return on investment over the years. I'm looking to do that for another six months: crowdfund.berkeley.edu/project/49720

crowdfund.berkeley.edu

Trial By Error: Reporting on ME and ME/CFS, Long COVID, etc

Help UC Berkeley raise $75,000 for the project: Trial By Error: Reporting on ME and ME/CFS, Long COVID, etc. Your gift will make a difference!

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ME/CFS Science @mecfsscience.org · 23/04/2026

1) Trigger warning: suicide This paper analyzed 505 entries on the National CFIDS Foundation memorial list. These were people with ME/CFS who passed away. The messages summarize their life, illness and struggles. The researchers grouped these into several recurring themes.

A paper analyzing memorial entries of ME/CFS patients

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Tessa Munt MP 🔶 @tessamunt.bsky.social · 10/04/2026

Initial results from the Big Survey of >5000 pwME are deeply disturbing… disbelief by NHS healthcare professionals, made to feel their ME was their fault, traumatic encounters with clinicians. This can not continue. More on 11 May👇🏽. Thanks @kacheston.bsky.social and @actionforme.bsky.social.

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Anil van der Zee @anilvanderzee.bsky.social · 12/04/2026

TRAILER: Buried Alive with M.E. I’ve spent the last months making a film for M.E. Kills, an online exhibition by A Quiet Storm. People with ME die every week. Many more are left to rot in dark rooms without care, disbelieved and dismissed. It’s a living death. #pwme #millionsmissing #severeME 1/

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Millions Missing France @millionsmissingfr.bsky.social · 07/04/2026

📰 Publié dans ICI Picardie, il apporte un éclairage essentiel sur l’encéphalomyélite myalgique (EM), en abordant plusieurs aspects majeurs de la maladie : le malaise post-effort, le sommeil non réparateur, l’errance médicale, ainsi que les risques liés à la réadaptation à l’effort pour les patients.

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Adam @abrokenbattery.bsky.social · 22/03/2026

Imagine you couldn’t watch television because the sound and colours were too exhausting or needed help just to eat, wash or go to the toilet. This can be a reality for people with a severe form of #LongCovid and #MECFS. Clip from German TV.

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Simon Spichak @spichaksimon.bsky.social · 15/03/2026

An estimated that 2.1M Canadians are living with #LongCOVID and 600k are missing work or school as a result. Most have no access to trials. Only 38 are enrolling in Canada with less than 4.5k total participants. For #LongCOVIDAwarenessDay, I looked at funding and trials.

Prevalence estimates in a bar chart beside number of participants in Long COVID trials in Canada.

PHAC eestimates 1.4M
StatCan estimates 3.5M ever had it with 2.1M still having symptoms. They estimate 600K missed work or school.

Only 4.2k participants in Long COVID trials enrolling in Canada

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ME/CFS Science @mecfsscience.org · 21/03/2026

1) 🔬🦠New article: we've made a comprehensive overview of the immune system in ME/CFS, analyzing major studies of the past 40 years. A longread with separate chapters on: - viral persistence - cytokines - neuroinflammation - antibodies - immune cells such as NK, B, and T cells

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Simon McGrath @simonmcg.bsky.social · 06/03/2026

Same old story from psychosocial researchers. An unblinded CBT trial found modest gains in the subjective outcome of fatigue. Which is almost likely bias. They measured physical activity with wearables, but failed to publish the results, later acknowledging no gains. So no evidence CBT works.

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Explicitly Anti-Vaxx @bellamyj.blacksky.app · 01/03/2026

Rates of death and disability from any virus are irrelevant if they are preventable. Any debate about percentages that does not first accept the need to prevent are just debates about how many people to allow to die and suffer so existing societal norms can remain mostly undisturbed.

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Richard Vallée @richardvallee.bsky.social · 28/02/2026

The mass suffering created and amplified by psychosomatic ideology is absolutely criminal. None of this has to happen, it's all a choice. No one is responsible or accountable for any of this filth. And all for complete bullshit fantasies.

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Carole Bruce @cabruce.bsky.social · 20/02/2026

Are we seeing a renewed attempt to erase #ME from the all NHS systems? Has a secret decree gone out? I’m seeing more and more reports from pwME about abuse in hospitals and from specialists. The feeble DHSC plan, the disregard of NICE guidelines, endless FND diagnoses from neuros. It’s all downhill.

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ME/CFS Science @mecfsscience.org · 14/02/2026

1) 🧵Been looking at cytokines; small signalling molecules of the immune system. Conclusion: lots of ME/CFS studies on this but inconsistent results. There doesn't seem to be an inflammatory cytokine response (in the blood). Most consistently elevated cytokine was TGF-beta.

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Tessa Munt MP 🔶 @tessamunt.bsky.social · 05/02/2026

Savannah Victora-May has been in hospital for 11 months with severe ME; a dearth of specialist treatment has contributed to her situation. The Govt’s Final Delivery Plan committed to exploring a specialised service for very severe ME. *What* is happening to prevent more cases such as Savannah’s?

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Adam @abrokenbattery.bsky.social · 02/02/2026

CW Edited clip from an ORF report on the death of Samuel by assisted suicide. Highlights that many people don’t know about the illness, there are no effective treatments, there is a lack of care, services, financial aid and support for people with #MECFS in Austria.

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Audrey Ryback @aryback.bsky.social · 22/01/2026

Calling pwME in the UK- please fill out this survey if you haven't yet! I'll be using data from this survey to better understand at what ages people develop ME and from what types of triggers. Thanks to everyone who has taken part so far!

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C.H. Romatowski @chromatowski.bsky.social · 20/01/2026

Learned of another death of a friend with ME/CFS, this time someone I’d known for six years. Very grateful to all of you who support work to relieve this terrible suffering.

Over the last months and particularly one week Paula deteriorated very quickly. Talking became harder ...and Paula loved to talk.Feeding more difficult. Eating tiring needing longer breaks between each teaspoon. It took 3 hours to finish a small bowel of puree. We stopped watching short funny shows together. Forced into a bent over position, no longer getting to a window. She had loved standing with support briefly at the window, smelling fresh air, watching Hurley play in the garden.

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Yann (ME/LC) @me-cfs.bsky.social · 18/01/2026

Apparently Wessely threatening to sue people writing on ME/CFS. I imagine this is the tip of the iceberg. I hope people who this happens to come out. Because this is exactly the kind of behind the scenes stuff we know happens but are difficult to gather evidence on.

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Yann (ME/LC) @me-cfs.bsky.social · 14/01/2026

Exactly. If we start defining what is science by “who says it” (credentials) we’ve essentially turned science into a hierarchical system of narrative making. “Proper” Science should be distinguished based on methods and evidence. Science is a method. Not an institution.

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Patients with Power @ptswithpower.com · 12/01/2026

Docs, How many patients have you misdiagnosed? Trick question. You'll never know. ⚡ #MedSky #NEISvoid #eds #pots #pwme

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