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Didier

@medidier.bsky.social

ME after covid infection Feb'22. Bedbound. 🛌 #ThereForME #GreatestMEdicalScandal #PEM 🇬🇧🇲🇫🇪🇦🇧🇪

1189 Posts551 Follower893 Folgt
Adam@abrokenbattery.bsky.social · 2d ago

It’s Severe ME Awareness Week. Here are some highlights from the explainer video on severe and very severe #MECFS I made in 2021. Experts discuss the lack of medical care, swallowing difficulties and tube feeding often being delayed until it becomes life threatening.

ME/CFS Science@mecfsscience.org · 5d ago

1) 🇪🇺 Shoutout to Mike Harley, aka Marathon Mike. He has been running marathons in every European country to raise funds for ME/CFS research. Along his trips, he interviews ME/CFS patients to learn more about the situation in their country.

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Prof Christina Pagel@chrischirp.bsky.social · 5d ago

4. Support for children in disadvantaged communities, inc devices, connectivity, food, safe spaces to learn, catch-up teaching 5. Dedicated and planned mental health and social support if school closures become necessary 6. Build capacity to generate evidence more rapidly for the next time 11/12

Prof Christina Pagel@chrischirp.bsky.social · 5d ago

2. Clean indoor air: helpful in a pandemic and good for health and learning at all times (and not just in schools but other buildings too) 3. Effective public health measures: testing, contact tracing, support for isolation, communication, etc 10/12

Prof Christina Pagel@chrischirp.bsky.social · 5d ago

Keeping schools open is a goal not a policy. A blanket "never close schools" is a bad lesson. I suggest these: 1. Do not prejudge next pandemic which will be a different virus and could have very different age profile of who it attacks 9/12

Liz Burlingame@lizmeactga.bsky.social · 5d ago

The 'silent epidemic' of Long COVID has historical precedent. In 2017, the CDC referred to #mecfs as 'America's Hidden Health Crisis'. People with ME/CFS have been here before. We've been here for decades. @wbez.org @meactnet.bsky.social

Billy Hanlon@bhanlon15.bsky.social · last wk.

WBEZ (Chicago): 'New research aims to break the ‘silent epidemic’ of Long COVID' 'Research out of Northwestern University shows that women with Long COVID have more intense neurological symptoms than men' www.wbez.org/in-the-loop-...

Lucibee@lucibee.bsky.social · 6d ago

I'll say it again: Someone really needs to ask DHSC exactly *what* steps they *are* taking, because it's clear that hardly anyone has seen these modules. There was *supposed* to be an "awareness campaign" in place by May this year. That hasn't happened. bsky.app/profile/luci...

Lucibee@lucibee.bsky.social · 4w ago

The PH minister Sharon Hodgson is keen to mention the modules when constituents ask for updates about the ME Final Delivery Plan, but it's healthcare workers that need to see them, not constituents! "Taking steps" seems to mean putting modules on the hub, but then not promoting them effectively.

Form text from "reassurance" that Sharon Hodgson MP has been sending to MPs and constituents who have asked about the delay to a severe ME service: "I would also like to reassure [constituent’s name] that we are taking steps to raise awareness of ME/CFS among healthcare professionals. The Department and NHS England have developed an e-learning programme to support healthcare professionals deliver the right care for patients with ME/CFS. All four sessions of this programme are now available; sessions 1, 2 and 3 have universal access, while the fourth session, which includes support and clinical management for severe ME/CFS, is only available to healthcare professionals. Further information can be found at learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288."
Adam@abrokenbattery.bsky.social · 6d ago

"This is not rare. This is one of life's worst diseases." Professor Chris Ponting speaking about harm from graded exercise therapy and hospital care, and how patients have been let down for decades because #MECFS was wrongly thought to be psychological. (Clip from 2024)

Naomi Whittingham@naomiwhitt.bsky.social · 6d ago

I realised there was a part of chronic illness that I'd never actually written about. Not the grief or the isolation. But the experience of living inside a body that feels so unpredictable and unsafe. Now I’ve written it. I’d love to know if it resonates with you.

The Burden of Chronic Illness That I Rarely Talk About

Being ill is hard.  What an obvious thing to say – and yet how often it goes unspoken.  I’ve written about many aspects of life with long-term illness: from the grief of dreams shat…

alifehidden.com

Didier@medidier.bsky.social · last wk.

This study + the one on aab transfer to mice, the decodeME, the autopsy one coupled with the shrinking brainstem from Germany... all those deserved to be in the frontpage of every mainstream newspaper since 2024. Never happens. From "mysterious and complex" to invisible. It's so obvious it hurts.

ME/CFS Science@mecfsscience.org · last wk.

🇳🇱 This paper from Rob Wüst's group was published yesterday in Nature Communications. They found several differences between ME/CFS and LC patients and deconditioned participants who underwent 60 days of bed rest 👇

betsy ladyzhets 😷@betsyladyzhets.bsky.social · last wk.

Today @thesicktimes.org: @sweetsciencewriter.bsky.social covers the recent Dysautonomia International conference! Featuring a new biobank initiative, presentations on autoimmunity, clinical trial results, discussions on the overlap of POTS and ME, and more. thesicktimes.org/2026/07/28/d...

Dysautonomia conference centers biomarkers and post-exertional malaise - The Sick Times

The 14th annual Dysautonomia International conference outside Houston included presentations on the role of autoimmunity in dysautonomia and a biobank initiative for POTS research.

thesicktimes.org

Chris Ponting@cgatist.bsky.social · last wk.

“Physical inactivity cannot solely explain the lower exercise capacity and skeletal muscle adaptations in long COVID and ME/CFS patients” www.nature.com/articles/s41...

Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest - Nature Communications

Low aerobic capacity in patients with long COVID and ME/CFS is often attributed to physical inactivity. The authors show that long COVID and ME/CFS patients have distinct skeletal muscle changes that ...

nature.com

David Davies-Payne@d2p.bsky.social · last wk.

…"long COVID and ME/CFS displayed higher proportions of type IIa/IIx fibers, and signs of intrinsic mitochondrial dysfunction, observations that were not seen following bed rest." #MECFS #LongCovid www.nature.com/articles/s41...

Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest - Nature Communications

Low aerobic capacity in patients with long COVID and ME/CFS is often attributed to physical inactivity. The authors show that long COVID and ME/CFS patients have distinct skeletal muscle changes that ...

nature.com

ME/CFS Science@mecfsscience.org · last wk.

1) 🇩🇪 There's now more info about the PIONEER study which will test inebilizumab (a drug that targets B-cells), in a subgroup of ME/CFS patients. It's a randomised trial at the Charité that aims to include 38 participants.

Screenshot of the trial registration for the PIONEER trial on inebilizumab
Tom Kindlon@tomkindlon.bsky.social · last wk.

Rehabilitation for ME/CFS carries a high risk of worsening the condition An article by German ME/CFS Society (Deutsche gesellschaft für ME/CFS) argues rehabilitation for ME/CFS carries a high risk of worsening the illness Google translation www-mecfs-de.translate.goog/rehabilitati... #mecfs #cfs

Rehabilitation bei ME/CFS birgt hohes Verschlechterungsrisiko — Deutsche Gesellschaft für ME/CFS

Rehabilitation bei ME/CFS birgt ein hohes Risiko für Zustandsverschlechterungen Studienlage spricht gegen Reha-Empfehlung Rehabilitation ist bei vielen Krankheiten ein bewährtes Konzept zur Unterstütz...

www-mecfs-de.translate.goog

Adam@abrokenbattery.bsky.social · last wk.

“To live this life is bad enough, but to try and face the scepticism, the disbelief and even the ridicule… is very, very hard to deal with on top of having an illness.” Joan McParland from Hope 4 ME & Fibro Northern Ireland talking about living with #ME in 2012. #MECFS

Empty Stands@emptystands.me · 2w ago

Unsere Saison ist vorbei - und wir freuen uns schon auf die nächste. Doch bevor wir nach vorne blicken, möchten wir eines sagen: Danke. Danke an alle ehrenamtlichen Helfer*innen, die unsere Aktionen vor Ort überhaupt erst möglich gemacht haben. Ihr wart großartig!