iiinova — where your digital self keeps evolving

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Anil van der Zee @anilvanderzee.bsky.social · 08/10/2026

Sometimes it can feel like things are standing still. Especially for severe ME patients who can't easily participate in research. But in the Netherlands, they are being included. archive.today/8DqOm #pwME #longcovid #QVS #lyme #PAIS #severeME

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Kirsty 🌻 @kirstysmestory.bsky.social · 23/09/2026

Can I connect with mutuals that had #MECFS or #longcovid since a young age and missed out on many milestones and most of their youth?

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Adam @abrokenbattery.bsky.social · 07/10/2026

“You’re fighting the illness, but then you’re fighting every health professional.” Hannah was struggling to digest food and losing weight, but healthcare professionals thought she had an eating disorder. 8 years later, this is still happening to people with severe #MECFS.

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George Monbiot @georgemonbiot.bsky.social · 02/10/2026

@davetuller1.bsky.social, a great champion of patients, interviewed me about the massive, ongoing scandal of the neglect, abuse and mistreatment of people with ME/CFS www.youtube.com/watch?v=Maae...

youtube.com

Interview with George Monbiot about Guardian column on ME/CFS

YouTube video by David M Tuller

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Adam @abrokenbattery.bsky.social · 06/10/2026

“The harm you have done is incalculable. It’s not me who has been spreading great harm around the world. It’s you, mate.” George Monbiot on being accused by Prof Michael Sharpe of “spreading” #LongCovid by writing about it and why he started writing about the #MECFS scandal.

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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026

Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Because the mechanisms that usually ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack.

Screenshot of the header of a published paper:

Studies in History and Philosophy of Science

Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis

Chloé de Canson

Department of of Theoretical Philosophy, University of Groningen, Oude Boteringestraat 52, Groningen, 9712 GL, the Netherlands

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Ramses Temmerman @ramsestemmerman.bsky.social · 05/10/2026

"Our brains need to eliminate waste so toxins don't build up and eventually lead to #brainfog, vision problems or other chronic conditions. Sometimes, there can be a block in the neck that can be corrected by cervical curve correction and other neck stabilizing treatments like #Prolotherapy."

youtube.com

Waking Up Exhausted? It Might Be Your Jugular Veins are Blocked

YouTube video by Caring Medical & Hauser Neck Center

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ME Research UK @meresearchuk.bsky.social · 01/10/2026

October is Dysautonomia Awareness Month. Dysautonomia encompasses conditions that affect the autonomic nervous system, e.g. orthostatic intolerance (including PoTS), and can significantly impact quality of life. People with ME/CFS often report related symptoms. tinyurl.com/dysauto2026

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Ramses Temmerman @ramsestemmerman.bsky.social · 05/10/2026

"Nooit eerder leken zovelen ervan overtuigd dat ‘de #langdurigzieken’ gezellig onderuit zakken in een comfortabele, uit overheidsgeld geweven hangmat. Na tien jaar ploeteren in de #arbeidsongeschiktheid kan ik je zeggen dat er bitter weinig ontspanning te vinden is in dit stelsel." @sociaal.net 🙏

sociaal.net

'Invaliditeit is balanceren op een broze, slappe koord.'

Overgeleverd aan de grillen van de politiek.

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Adam @abrokenbattery.bsky.social · 03/10/2026

“ME/CFS patients are deeply inconvenient.” George Monbiot on how people with #MECFS need long term support, but governments and insurers have an incentive to “brush it away” and dismiss patients leaving them “massively mistreated, maligned” and “blamed for their illness”.

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Ramses Temmerman @ramsestemmerman.bsky.social · 01/10/2026

Volgens @sciensano.be circuleren #Covid besmettingen in België op een hoog niveau. Long Covid Belgium roept op tot een brede alliantie rond preventie (luchtkwaliteit, testen, isolatie). Zonder ingrijpen kost aanhoudende viruscirculatie de Belgische economie €700 mln tot €1,4 mld per jaar (OESO).⚠️

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Ramses Temmerman @ramsestemmerman.bsky.social · 30/09/2026

"Politici zijn al jaren de afbouw van de solidariteit aan het voorbereiden. Hun praatjes over 'het profitariaat' hebben ons empathisch vermogen aangetast. Als we niet meer voor die mensen willen zorgen, voor welke samenleving vechten we dan nog?" Bert Bultinck @knack.be 🙏

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Ramses Temmerman @ramsestemmerman.bsky.social · 30/09/2026

"Bijna de helft van de personen in #invaliditeit moet medische ingrepen uitstellen omdat ze die niet kunnen betalen. Bij huurders of alleenstaanden met kinderen stijgt dat naar 60 procent. Het zijn honderdduizenden verborgen drama’s."

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Ramses Temmerman @ramsestemmerman.bsky.social · 30/09/2026

"De regering-De Wever hoopt flink te besparen op de invaliditeitsuitkeringen. Een nieuwe studie bewijst hoe rampzalig dat plan is." "Politici liegen als ze zeggen dat honderdduizenden #langdurigzieken in de invaliditeit van vandaag op morgen weer aan het werk kunnen." www.knack.be/nieuws/belgi...

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Anil van der Zee @anilvanderzee.bsky.social · 28/09/2026

Almost nine out of ten people with #LongCovid do not fully recover from their symptoms. They have to learn to live with them. This is shown in a study by researchers from Frisius MC and the UMCG in Groningen. For the study, 1,200 people were followed over the past three years. #PAIS #pwme

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Adam @abrokenbattery.bsky.social · 27/09/2026

“It has sent many people from having mild or moderate cases to severe #MECFS… it has turned people housebound, bedbound. It has completely destroyed their lives.” @georgemonbiot.bsky.social on the harm caused by graded exercise therapy (GET) for #MECFS.

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Alem Matthees @alemmatthees.bsky.social · 25/09/2026

The most insane thing about this #MECFS scandal, beyond all the suffering and neglect, is that it costs hundreds of times more in economic losses every year than it would to fund the research that could eventually decrease this burden. The degree of short-sightedness involved is astounding.

theguardian.com

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot

Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot

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Billy Hanlon @bhanlon15.bsky.social · 26/09/2026

Bateman Horne Center: Underlying Biological Abnormalities in Long COVID & ME/CFS - Sept 2026 Ft. Dr. Anthony Komaroff, Dr. Lily Chu, and Dr. Cindy Bateman www.youtube.com/watch?v=Nu5T...

youtube.com

Underlying Biological Abnormalities in Long COVID & ME/CFS - Sept 2026

YouTube video by Bateman Horne Center

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Ramses Temmerman @ramsestemmerman.bsky.social · 25/09/2026

"Arnaud Denis was een bekende Franse acteur, theaterregisseur/toneelschrijver. Na een operatie voor een liesbreuk in 2023 kreeg hij ernstige gezondheidsproblemen, waaronder chronische pijn en #MEcvs (myalgische encefalomyelitis/chronisch vermoeidheidssyndroom)." #RIP #MillionsMissing #Euthanasie

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Ramses Temmerman @ramsestemmerman.bsky.social · 25/09/2026

Het artikel laat na te vermelden dat hij aan ernstige #MEcvs leed waarvoor nog geen effectieve behandelingen bestaan. Het RIZIV werkt aan een 'nieuw' zorgtraject waarbij duizenden biomedische bevindingen over #LongCovid en ME/cvs genegeerd worden. Van wanhoop gesproken. @pjhuyghebaert.bsky.social ⬇️

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Ramses Temmerman @ramsestemmerman.bsky.social · 25/09/2026

Yes, I know. But in that case, they are investigating the umbrella term 'Long Covid' which encompasses several different conditions. I haven't yet looked at the study to see if they define a specific group.

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Ramses Temmerman @ramsestemmerman.bsky.social · 25/09/2026

So they are looking for #LongCovid patients without PEM. Because that's the hallmark symptom of #MEcfs. How bizarre is that?

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Richard Vallée @richardvallee.bsky.social · 24/09/2026

The most important detail about this scandal is that it's 100% a choice. The responsibility of the medical profession is on the same order as what the tobacco industry did about the harms of its products. All of this is a choice. They know. We keep telling them. They don't care. Not one bit.

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ME/CFS San Diego @mecfssd.bsky.social · 24/09/2026

Trigger Warning, Arnaud Denis: Person with severe ME/CFS died by euthanasia in Belgium on Sept. 22. ME Global Chronicle shares his account of healthcare and final message to fellow patients. meglobalchronicle.wordpress.com/2026/09/23/i...

meglobalchronicle.wordpress.com

I’m done with medical abuse

Arnaud Denis, a 43-year-old French director and actor, passed away in Belgium on September 22, 2026. A few years ago, following surgery, he developed a very severe case of ME/CFS. He chose to under…

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Ramses Temmerman @ramsestemmerman.bsky.social · 24/09/2026

So interesting, yet it doesn't entirely surprise me; I think there is still so much we don't know about these intelligent animals. I love watching them in beautiful videos like this one.🐘💚

youtu.be

Adorable Baby Elephant Finding His Feet #WorldElephantDay

YouTube video by John Downer Productions

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Alex @admiringbog.bsky.social · 24/09/2026

Mentions a brain retraining study with supposedly good results. We get accused a lot of being prejudiced against this concept, but I always feel the opposite—would love a goofy psych program to fix me in 4 weeks.

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Ramses Temmerman @ramsestemmerman.bsky.social · 22/09/2026

Patiënten met een chronische ziekte waarvoor nog geen effectieve behandelingen bestaan gaan niet op magische wijze genezen door hen nog meer te viseren, stigmatiseren, onder druk te zetten of hun uitkering af te nemen. #PAIS #MEcvs #LongCovid #POTS

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Ramses Temmerman @ramsestemmerman.bsky.social · 22/09/2026

De impact kan verwoestend zijn. Zo las ik het verhaal van iemand die haar huis moest verkopen na zo'n onterechte schorsing. Want zelfs een halftijdse job volhouden is met haar invaliderende aandoening #MEcvs simpelweg onmogelijk. Wie een eigendom bezit heeft immers geen recht op een #leefloon.

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Ramses Temmerman @ramsestemmerman.bsky.social · 22/09/2026

Attesten van behandelende artsen en specialisten die verklaren dat een patiënt arbeidsongeschikt is, lijken bijna geen waarde meer te hebben. Ze worden momenteel door veel adviserend artsen van onze ziekenfondsen steeds vaker genegeerd.

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Ramses Temmerman @ramsestemmerman.bsky.social · 22/09/2026

Het is helemaal niet zo vreemd dat er veel klachten zijn van #langdurigzieken tegen adviserend artsen. In patiëntengroepen lees ik de laatste maanden veel verhalen over onterechte schorsingen van mensen die dolgraag wíllen werken, maar het fysiek simpelweg niet kunnen.🧵

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Danielle Beckman @daniellebeckman.bsky.social · 18/09/2026

Covid is not over just because people got tired of hearing about it. #SARSCoV2 is still circulating, still being detected in the air, and still causing chronic diseases like #LongCovid Another reminder that the air we share is part of public health infrastructure. Clean air is public health.

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Ramses Temmerman @ramsestemmerman.bsky.social · 17/09/2026

In mijn opiniestuk - over de verwaarlozing van #MEcvs en #LongCovid in ons land - kan u doorklikken naar verschillende bronnen die aantonen dat de stoornissen bij deze patiënten wel degelijk objectiveerbaar zijn. @stevenvdwalle.bsky.social bsky.app/profile/rams...

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Ramses Temmerman @ramsestemmerman.bsky.social · 17/09/2026

"When the necessary #LongCovid expertise and care are not available in Belgium within a medically acceptable timeframe, access to specialized care abroad must be effectively guaranteed, in compliance with European law," stated @longcovidbelgium.bsky.social.

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Alex @admiringbog.bsky.social · 15/09/2026

They’re not saying this but it sounds like this drug treats the ME/CFS subtype of LC: “The novel drug bezisterim may help improve fatigue, post-exertional malaise, and neurological symptoms in people with Long COVID”

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 11/09/2026

Carmen is discussing ME vs LC and note that there are many symptoms in common. On a previous slide, she said 10-30% of people with Long COVID met criteria for ME, but I didn't catch which criteria.

Sotzny et al. ME/CFS: evidence for an autoimmune disease, autoimmunity reviews 2018
Peluso et al. Mechanisms of Long COVID and the path toward therapeutics. Cell. 2024

Showing that there is immune activation, autonomic and metabolic dysfunction in both

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 11/09/2026

David emphasizes that #MECFS is a cluster disorder whereby you meet enough criteria you get the label and doesn't necessarily point to specific pathogenicity. (He's not saying it's not pathological, he's saying we don't wholly understand that the pathology for each person is obvious or the same.)

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Alex @admiringbog.bsky.social · 12/09/2026

It’s weird seeing all these “I have COVID” posts knowing some of them will get Long COVID. And most of them aren’t worried at all.

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Manuel Ruiz-Pablos @manruipa.bsky.social · 09/09/2026

🔴 Long COVID didn’t come out of nowhere. From the Russian flu and 1918 influenza to EBV, Q fever, SARS and Ebola, post-infectious illness has a much longer history. What can that history teach us about Long COVID & ME/CFS? substack.com/@manruipa/no... #LongCOVID #MECFS