iiinova — where your digital self keeps evolving

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

Shame. They could really use some patients who have some common sense scepticism.

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Yann (ME/LC) @me-cfs.bsky.social · 07/10/2026

Do they have PPI at this stage?

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Yann (ME/LC) @me-cfs.bsky.social · 04/10/2026

It’s incredibly disappointing that with so little research funding, most of it is wasted on poor, methodologically dubious research. This is obviously the case for the psychologisers, but sadly far too many researchers who see the biological reality publish terrible quality stuff as well.

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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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Yann (ME/LC) @me-cfs.bsky.social · 11/09/2026

Yup. Need high quality research to establish ground truths about ME/CFS. Instead we constantly get poor quality contradictory papers that just lead to confusion.

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Yann (ME/LC) @me-cfs.bsky.social · 31/08/2026

People tend to be so afraid to admit ME can kill you. I’ve had some mild people who were seemingly good people lecture me on fear-mongering when I mentioned that the consequences of ME/CFS can lead to death.

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Yann (ME/LC) @me-cfs.bsky.social · 27/08/2026

Extremely late reply soz but from what people have told me (I’m very severe and have considered gabapentin), it’s probably not helpful and more likely to make things worse by increasing side effects

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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 · 11/08/2026

That’s ridiculous I can’t believe it recommends CBT as a “treatment” despite the NICE guidelines clearly stating it shouldn’t be used as a “treatment” just to help with “coping”

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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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Yann (ME/LC) @me-cfs.bsky.social · 06/08/2026

Interesting to see this coming from what is described as a “conservative think tank”.

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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

that sounds nice. problem is i dont have anywhere to put hose out. So AC unless installed split which requires landlord approval is not a possibility for me..

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

If severe ME nursing homes become a thing they need AC. Temperature increases like this are a massive cause of PEM, and in my case I fear this will lead to permanent worsening. Haven‘t felt this off since last time I permanently worsened so… This will only get worse with climate change.

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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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Yann (ME/LC) @me-cfs.bsky.social · 22/06/2026

Svp utiliser l‘alt texte sur les images du vos posted pour ceux entre nous qui ont besoin de cette accessibilité.

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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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Yann (ME/LC) @me-cfs.bsky.social · 13/06/2026

True. But if genetic research shows similarities to psychiatric diseases, we should probably use those leads to inform biomedical research like looking at synapses neurons and brain regions. Because that might lead to proper biomedical understanding and perhaps treatments.

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Yann (ME/LC) @me-cfs.bsky.social · 10/06/2026

While the standard view of diseases like Depression and Schizophrenia imagine a psychological component, I think in reality (just like ME/CFS) they are very likely fully physical diseases.

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

Has this not been shared on S4ME? I can’t find a post for it.

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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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Yann (ME/LC) @me-cfs.bsky.social · 28/05/2026

And as far as I understand the groups were wildly differing in average age and age is a known confounder for noradrenaline levels and this wasn’t corrected for. (Correct me if I’m wrong I just got this from skimming S4ME)

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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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Yann (ME/LC) @me-cfs.bsky.social · 21/05/2026

May be of interest: bsky.app/profile/me-c...

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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 · 18/05/2026

I feel like that specific one could be confounded by ME/CFS diagnostic bias. (Consistently more upper/middle class aka. “more educated” people are diagnosed)

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Yann (ME/LC) @me-cfs.bsky.social · 13/05/2026

I think the best biological evidence we have is neurological. Ie. decode ME mainly found neurological changes. I agree though that ME/CFS being assigned to neurology in the real world would currently be disastrous given Neurology’s whole FND thing and reputation of being quite “gaslighty”.

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

Oh interesting. Thank you. I’ll have to inform myself on the difference.

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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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