iiinova — where your digital self keeps evolving

Reposted by Viv

ME/CFS Science @mecfsscience.org · 19/04/2025

This looks like an interesting and much needed project. In Neunkirchen-Seelscheid in Germany, a housing project is being planned especially for severely ME/CFS sufferers with 24-hour assistance. sozialhummel.de/wohn...

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Viv @stillviv.bsky.social · 15/03/2025

#5JaarLongCovid 5 jaar geleden keek ik, als toen al huisgebonden ME patient, aan de zijlijn mee hoe Covid een ravage aanrichtte.

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NietHersteld @niethersteld.bsky.social · 03/03/2025

🚨5 jaar Long Covid, nog steeds #NietHersteld ! Op 15 maart, #LongCovidAwarenessDay2025, is het tijd voor actie! Want ook al zie je ons misschien niet, we zijn er nog wel. En hoe er nu met deze groep omgegaan wordt kan niet langer! Samen kunnen we van ons laten horen! ✊💙 Doe je mee? #LongCovid🧵

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Kelly @broadwaybabyto.bsky.social · 25/02/2025

It’s hard to explain the hope I had at the beginning of the pandemic. I was scared, but I also thought we were going to become a more inclusive society. We would care more about chronic illness. Having that hope ripped away and replaced with eugenics & fascism has been incredibly painful.

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Naomi Harvey PhD @naomidharvey.bsky.social · 18/01/2025

An off label medication list has been compiled for cover from the Austrian Health Insurance Fund for ME/CFS and Post Covid Sydrome (long Covid) www.meduniwien.ac.at/web/referenz... I’ve used ChatGPT to translate them in the replies below this post in case it helps anyone else 🧵

meduniwien.ac.at

Für Ärzt:innen & Gesundheitsberufe | MedUni Wien

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elle carnitine 🪳 @ellecarnitine.bsky.social · 17/01/2025

Apparently, yet another well-respected figure of Long COVID research has said that we should move past the use of questionnaires and start doing trials using only biomarkers, so here is yet another thread on why that’s confused and harmful to sick people. Buckle up!

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Kelly @broadwaybabyto.bsky.social · 16/12/2024

Before you judge a disabled person for the way they’re coping with the messiness of life …consider the sickest you ever were. Maybe it was a flu or an infection thst required surgery Try and remember the pain, fatigue & crushing monotony of it Now imagine knowing it would never end. Then be kinder

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Viv @stillviv.bsky.social · 16/12/2024

Interesting background information, I am now even more puzzled (and disappointed!) by the Cochrane decision.

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Tom Kindlon @tomkindlon.bsky.social · 14/12/2024

8-year anniversary of reanalysis paper on recovery in £5m #PACEtrial, with data the PACE team fought so hard to keep to themselves. Shows recovery rates in all trial arms were low, using the criteria the PIs promised in their own protocol tandfonline.com/doi/full/10.... #MEcfs #CFS

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 05/12/2024

The last half of the 1990s was when the false image of ME/CFS as a “yuppie“ disease began to crumble, thanks to good work done by Leonard Jason and others like this west coast group. I had been ill for over 13 years before the CDC finally acknowledged that Black people like me could have ME/CFS.

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sarah boothby @swastrosarah.bsky.social · 06/12/2024

Please share widely! This was the best an inquest could do. It took 4 years and the death of my only child to get here. NHS England must keep to this promise; the simplest change to a long established narrative that killed Maeve and threatens every other person with #ME. 🙏 @gwynnemp.bsky.social

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Brian Hughes @bmhughes.bsky.social · 28/11/2024

A new BMJ review claims that #LongCovid can be treated using CBT and physical exercise As ever, the devil is in the detail TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted (Too bad they hid the crucial deets in an online supplement!) cc #pwME #MECFS

thesciencebit.net

That BMJ review of Long Covid therapies does not show what it says it does

The BMJ have published a “living systematic review” of interventions for the management of Long Covid. It sets out to gather all relevant studies, and to comb their findings in order to see what works...

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Kelly @broadwaybabyto.bsky.social · 28/11/2024

For anyone who needs a reminder tonight - your value is not tied to your ability to work or participate in capitalism. In fact - being disabled IS work. People have no idea how much work. They imagine it like a vacation - laying around all day doing whatever fun activities you most enjoy. 🧵

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Viv @stillviv.bsky.social · 23/11/2024

Fun challenge Choose 20 books that have stayed with you or influenced you. One book per day for 20 days, in no particular order. No explanations, no reviews, just covers. #BookSky💙📚 #Books #BookChallenge 1/20

Book cover of When breath becomes air by Paul Kalanithi

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Putrino Lab @putrinolab.bsky.social · 20/11/2024

Feels like a good time for a thread about all things exercise for people living with infection (and exposure)-associated complex chronic illnesses (IACCs) such as #MECFS, #LongCOVID and chronic #Lyme /tick- and vector-borne illness. Let’s start with a trip down memory lane. 1/

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 20/11/2024

Just read the editorial published by the ME Association, and while I won't share it, here's my response: No one claims that bedrest cures ME; rather, it's good to be as active as we can be without inducing PEM. The article is condescendingly written, strawmanning with the intent to agitate.

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Begrepen Klachten @begrepenklachten.bsky.social · 12/09/2024

Stichting Begrepen Klachten bestaat 1 jaar! Om dit te vieren willen we met deze video alle patiënten een hart onder de riem steken. Met ons team en met veel andere lotgenoten en organisaties – blijven we voor jullie strijden. #WijZienJou www.youtube.com/watch?v=-4JY...

youtube.com

#WijZienJou - Stichting Begrepen Klachten 1 jaar

YouTube video by Begrepen Klachten

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 08/08/2024

Today, Aug 8, is #SevereMEDay. Today we discuss severe-presenting #MECFS and remember people with severe ME. #MECFS is an infection-associated chronic illness, which means it is often, but not always, kicked off by an infection. ~Half of #LongCOVID cases at 6 mo meet the dx criteria for ME/CFS. 🧵

Two diagrams from the Mayo Clinic Proceedings article I co-authored. On the left, a diagram of a woman's body, including symptoms of fatigue, muscle aches, PEM, cognitive dysfunction, unrefreshing sleep, orthostatic intolerance, temp. dysregulation, urinary frequency, myalgia, sensory sensitivity/reactivity, swollen lymph nodes & other flu-like symptoms, shortness of breath, palpitations/chest pain, appetite changes and diarrhea/constipation. On the right, a wheel diagram of symptoms that may flare in post-exertional malaise, the pathology that occurs w/overexertion in which many symptoms flare and new symptoms may appear. It notes that PEM is not deconditioning, not being more tired than usual after activity, not second-day muscle soreness and symptoms are not necessarily relieved by sleep. It includes all the symptoms mentioned in the first diagram but has some sections on what it's like in the patient's own words.

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