iiinova — where your digital self keeps evolving

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

Rob is hoping to present results on this trial next year:

Sonlicromanol phase 2 trial

- A flow diagram shows Long COVID leading to an “Unknown X-factor,” which is proposed to cause mitochondrial dysfunction
- Mitochondrial myopathies are also shown as a route to mitochondrial dysfunction
- The dysfunctional mitochondrion is illustrated in pink with a damaged, irregular outer edge
- Mitochondrial dysfunction is linked to:
- Fatigue
- Worsening after exercise / PEM
- Orthostatic intolerance
- An arrow labeled “sonlicromanol” leads from the damaged pink mitochondrion to a healthy-looking green and blue mitochondrion
- The treated or restored mitochondrion is linked to:
- Improved exercise capacity
- Less fatigue
- Higher PEM threshold
- Shorter PEM duration
- Improved quality of life

Image description: The slide uses contrasting illustrations of a damaged pink mitochondrion and a healthy green-and-blue mitochondrion to depict the proposed effect of sonlicromanol. Khondrion and Amsterdam UMC logos appear at the bottom.

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

Now they're initiating trials using anti-CD38 and anti-CD14 antibodies, with some promising results. This one was unfortunately quite a lot, referenced a large number of publications-- sorry I could not hunt them down fast enough! Remember the recording will be out there in a week or so, likely.

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Jelmer Visser @dietukkerfries.bsky.social · 25/08/2026

Ja want kijk. Dit is de truc. Wat ik dus kan doen, is neonkleuren toewijzen aan bepaalde klassen. Die kleuren kunnen niet anders: geel, rood, roze, paars. Deze 4 kleuren lichten dus op in het donker. De rest niet. Dus wat dan ontstaat, is een soort sterrenhemel van 290k hexagons.

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Jelmer Visser @dietukkerfries.bsky.social · 25/08/2026

Even de power van dat nieuwe apparaat van me uittesten met een complexe dataset waarvan die vorige snoeihard KO ging. Dit is bevolkingsdichtheid in 290k hexagons van 3 bij 3km voor heel Europa. Als je dit goed schaalt, kan je een hele leuke pixelachtige nachtkaart maken met lichtjes Enzo.

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jim faas 🍀 @jimfaas.bsky.social · 14/08/2026

🔴6 JAAR POSTCOVID🔵Nieuwe kennis oude reflexen? ▪️Precies 6 jr geleden blogde ik in MC dat postcovid hetzelfde lot dreigde te ondergaan als MECVS: eerst negeren, daarna psychologiseren ▪️tussenstand na 6 jaar: Wat weten we inmiddels wél, wat doen we nog steeds hetzelfde en vooral: wie heeft er haast

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ME/CFS Science @mecfsscience.org · 27/07/2026

2) Inebilizumab targets the CD19 a marker on B-cells; the immune cells that produce antibodies. Compared to Rituximab (which targets CD20), inebilizumab targets a broader range of B-cell subsets, including early B cells and plasmablasts.

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ME/CFS Science @mecfsscience.org · 27/07/2026

4) In addition, the patients must have received immunoadsorption in a previous trial. The must have had an initial positive response to the immunonadsorption followed by a worsening afterwards. Such a pattern suggest that there was a positive effect but it wasn't sustained.

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ME/CFS Science @mecfsscience.org · 18/07/2026

1) 🇩🇪 The German ME/CFS Research Foundation has supported 7 research projects with a total budget of € 2.4 million. It includes a treatment trial of tafasitamab, which targets B-cells, and a genetic study of families with multiple members affected by ME/CFS A brief overview

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ME/CFS Science @mecfsscience.org · 18/07/2026

2) The treatment trial is led by Carmen Scheibenbogen and will be a follow-up study to the randomized Phase II trial of the CD19 antibody inebilizumab. Tafasitamab also targets CD19 but is less expensive, so they want to test if this also works in a subgroup of 38 patients.

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Solve M.E. @solveme.bsky.social · 13/07/2026

If you were a participant in the Vyvgart trial, please email Mackenzie at coreresearch@mountsinai.org to get a free at-home lab kit. Mt. Sinai & Yale are testing against a newly discovered autoimmune biomarker, with the goal of initiating a new FCRN inhibitor trial by year-end!

Notice for 2023-2024 long COVID trial participants to donate blood for autoimmune biomarker research at Mt. Sinai.

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Ezra S @ezra.zone · 10/07/2026

well, it happened: i have now taken cancer drugs (as part of a clinical trial) to see what they do for my long covid.

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ME/CFS Science @mecfsscience.org · 11/07/2026

1) 🇬🇧 The results of the big STIMULATE-ICP study are in. It tested three repurposed drugs in hundreds of Long Covid patients: - colchicine: an anti-inflammatory - famotidine and loratadine: antihistamines - rivaroxaban: an anticoagulant Sadly, all three had poor results.

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Theo Jans 🌱🌿🌳🌤 @theojans1.bsky.social · 30/06/2026

CBS: vorig jaar weer minder immigratie, vooral minder asiel- en kennismigranten Beste mensen, Kijk nu eens rustig naar die grafiek; Er is HELEMAAL GEEN #asielcrisis. Er is geen tsunami van asielzoekers. En het opvangprobleem is de gecreëerde onwil van domrechts. nos.nl/l/2620940

nos.nl

CBS: vorig jaar weer minder immigratie, vooral minder asiel- en kennismigranten

In 2025 immigreerden 309.000 mensen naar Nederland, 8000 minder mensen dan in 2024, vooral van buiten de EU.

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Jelmer Visser @dietukkerfries.bsky.social · 26/06/2026

Maar als Antarctica ooit ontdooit zullen er allerlei fossielen van bizarre uitgestoven buideldieren opduiken, waar we nog nooit van hebben gehoord. Het is een missing link in de evolutionaire ontwikkeling, waar we op dit moment onmogelijk achter kunnen komen.

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ME/CFS Science @mecfsscience.org · 30/05/2026

1) Impressive paper from Iwasaki’s lab pointing at autoimmunity in a subgroup of Long Covid patients. They replicated previous experiments of antibody transfer causing symptoms in mice. A couple of findings that stand out…

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VirusSucks.com @virussucks.com · 26/05/2026

Did you participate in this Vyvgart clinical trial for #LomgCOVID? If so, Mt. Sinai needs your blood to analyze a potential autoimmune biomarker that might help millions.

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Jelmer Visser @dietukkerfries.bsky.social · 01/06/2026

Mensen…. KIJK WIE ZONET HELEMAAL SCHOR EN HONGERIG VOOR HET RAAM STOND!

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Jelmer Visser @dietukkerfries.bsky.social · 29/05/2026

Vrijlinks is de ideale “linkse oppositie” die extreemrechtse partijen dolgraag willen hebben.

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Jelmer Visser @dietukkerfries.bsky.social · 29/05/2026

Putin heeft ook zulke nep-oppositiepartijen in de Doema zitten. Die zeggen voor de bühne soms wat afwijkende dingen, waardoor het lijkt alsof Rusland een parlementaire democratie is.

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Jelmer Visser @dietukkerfries.bsky.social · 25/05/2026

Deze omschrijving van Nederlanders is bijna een halve eeuw oud.

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Velon CC @veloncc.bsky.social · 23/05/2026

Pain face hall of fame entry 🥵 Tim Rex turned himself inside out for team leader Jonas Vingegaard on the Doues and Lin Noir climbs on Stage 14 of the Giro d’Italia 💪 Tim Rex – combined effort over last 2 climbs ⏱️ Time: 31‘00“ ⚡️Avg power: 400w 💥 Max power: 580w 🇮🇹#GirodItalia

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Jelmer Visser @dietukkerfries.bsky.social · 21/05/2026

Dus. Wat vinden jullie van mijn vuurtorenkaart van Nederland?

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Jelmer Visser @dietukkerfries.bsky.social · 19/05/2026

En als er dan een economische crisis uitbreekt, je je baan kwijtraakt en dakloos wordt, is het in ieder geval aangenaam najaarsweer als voor een winkelcentrum staat te graaien naar statiegeldblikjes in vuilnisbak. 🙂 Het mooie van weinig hebben is dat je ook van kleine dingen kunt genieten.

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Joris Luyendijk @jorisluyendijk.bsky.social · 16/05/2026

Zin om de Russische moord-machine een tik(je) te geven, en tegelijk de kennis in NL van drones te vergroten? Deze club ontwikkelt, print en assembleert interceptor drones, in constante afstemming met Oekraiense commandanten a/h front. Kosten p/ drone: € 1000. Help jij? www.geef.nl/nl/actie/ver...

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Johan Van Weyenbergh @johanvawe.bsky.social · 29/04/2026

Pathogenic IgG from #LongCOVID patients with neurological sequelae triggers sensitive but not cognitive impairments upon transfer into mice rdcu.be/ff6vi

rdcu.be

Pathogenic IgG from long COVID patients with neurological sequelae triggers sensitive but not cognitive impairments upon transfer into mice

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ME/CFS Science @mecfsscience.org · 20/04/2026

1) 🇩🇪 There are now multiple trials of Immunoadsorption/plasmapheresis on ME/CFS. We've tried to make a brief overview but feel free to add studies in case we missed some. Looks like all of them are from Germany. Mostly look forward to the 2 sham-controlled trials.

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Jelmer Visser @dietukkerfries.bsky.social · 26/04/2026

Geritsel

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Post-Viral Trials @postviraltrials.bsky.social · 16/04/2026

The drug is trimetazidine (seems very paternalistic to not mention it)

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Raoul Schendel @raoullucas.bsky.social · 15/04/2026

Eine neue Beobachtungsstudie der Charité Berlin zur Immunadsorption bei #MECFS. Untersucht wird unter anderem, ob Patienten mit bestimmten Autoantikörpern profitieren und ob sich Verbesserungen anhand von veränderten Gedächtnis-B-Zellen voraussagen lassen. clinicaltrials.gov/study/NCT075...

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ME/CFS Science @mecfsscience.org · 03/04/2026

1) RECOVER-VITAL results are in. The trial tested long-term Paxlovid to treat viral persistence. It included more than 900 Long Covid patients, tested multiple outcomes for PEM, cognitive and autonomic dysfunction, but none showed significant improvement. A brief summary...

Screenshot of the RECOVER-VITAL trial registration

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ME/CFS Science @mecfsscience.org · 01/04/2026

1) 🇧🇷 A big trial from Brazil reports that the antidepressant fluvoxamine improved fatigue in Long Covid patients while the diabetes drug Metformin had no effect. The effect of fluvoxamine unfortunately looks quite small and it's unclear if it is clinically significant.

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Jelmer Visser @dietukkerfries.bsky.social · 01/04/2026

Geen etmaal gaat voorbij zonder deze eindeloze clownerij. En dat daar in de VS intern niemand ingrijpt, toont aan dat ze het blijkbaar allemaal wel prima vinden. Dat is oké. Maar dan moeten we alle banden met die Amerikanen verbreken. Z.s.m. Alternatieven zoeken. Dit moet stoppen.

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PolyBio Research Foundation @polybiorf.bsky.social · 24/03/2026

BREAKING: VIPER Diagnostics Program Launches as First Phase of PolyBio Long COVID Cure Initiative Program will validate diagnostic tests for SARS-CoV-2 persistence and other drivers of Long COVID, providing a path to targeted treatments.

A scientist with red, short hair and white skin sits at a computer screen evaluating a microscope slide. They are wearing a blue surgical mask. A large microscope sits on the desk beside them.

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Simmaron Research Foundation @simmaronresearch.bsky.social · 21/03/2026

We’re launching a placebo-controlled study of rapamycin for #MECFS and #LongCOVID. Early data from our Phase II trial shows promise — now we must test it under rigorous blinded conditions. Help us make it happen. Donate to support the study. www.simmaronresearch.com/donate #ME #Rapamycin

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Jelmer Visser @dietukkerfries.bsky.social · 20/03/2026

Rusland heeft ook wat gebeid in handen van oblasten die ze niet hebben geclaimd, ook Kharkiv, Sumy, Mikolaev zitten in zo’n situatie. Kherson en Zaporizhia worden - zoals Donetsk en Luhansk al in 2014 - wel volledig geclaimd.

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Jelmer Visser @dietukkerfries.bsky.social · 17/03/2026

Gezellig twitteren.

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Post-Viral Trials @postviraltrials.bsky.social · 13/03/2026

I’ve tried 14 of these, and then some. IVIg, midodrine, and Mestinon are the ones on the list I’d most highly recommend; tVNS not on the list; and exercise-based physical therapy once you’re doing some of these things and want to test if it’s working well.

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Raoul Schendel @raoullucas.bsky.social · 10/03/2026

Last week a long article about #BC007 was published here in Germany. In short: A new company named APTA Therapeutics, which largely consists of former BerlinCures employees, will continue to explore the drug's potential for #MECFS and #LongCOVID. www.riffreporter.de/de/wissen/lo...

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