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#mecfs

101 posts62 participants4 posts today
Continued thread
Tom Kindlon

As described in Science for ME weekly update:

A clear article written for non scientists that explains what the research did and what it found. "each genetic signal is like an ‘X’ on a treasure map indicating roughly where the researchers should dig for treasure. The next step is to find that treasure – the specific genes that are causing ME/CFS."
#mecfs @mecfs

*
I am Tully's fierce justiciar

please help my friend Evel!

xen is fundraising for a lightweight electric wheelchair. it's refurbished and xen has a discount code — but there are only two in stock!

151/$300

cash.app/$evelbrute
venmo.com/u/evelbrute
paypal.com/paypalme/beeees5

"(We could also use help with random needs and wants that are on my throne:
throne.com/evel

It has things for household, some one off things, some silly things and some serious things, and some gift cards that help with monthly expenses :floofHeart: )

🤎"

Cash AppPay $evelbrute on Cash AppInstantly exchange money for free on Cash App
#chronicIllness#queer#disabilityCrowdfund
ahimsa

"X marks the spot where ME/CFS biology can be discovered"

decodeme.org.uk/x-marks-the-sp

A blog post on the science behind DecodeME

"Scientists, people with ME/CFS, and their charities came together to create DecodeME, the world's biggest ME/CFS study – and its results are striking.

18,000 people with ME/CFS gave their DNA, enabling DecodeME to reveal eight genetic signals [which] indicate that immune and neurological processes play a significant role in ME/CFS."

DecodeME · X marks the spot where ME/CFS biology can be discovered - DecodeME06 August 2025 Scientists, people with ME/CFS, and their charities came together to create DecodeME, the world’s biggest ME/CFS study – and its results are striking. 18,000 people with ME/CFS gave their DNA, enabling DecodeME to reveal eightgenetic signals for the illness. These signals indicate that immune and neurological processes play a significant role in…
#MEcfs#PwME#DecodeME
ahimsa

Interested in learning more about the results from Decode ME the world's largest ME/CFS study?

There's a free webinar on Thur, Aug. 14, at 10:30 AM Eastern Time.

Registration link = us02web.zoom.us/webinar/regist

Questions for presenters can be posted by forum members on this Science for ME forum thread (no guarantee they will be answered but they will be passed on to the team):

s4me.info/threads/decodeme-ini

@mecfs

ZoomWelcome! You are invited to join a webinar: DecodeME Initial Results Webinar . After registering, you will receive a confirmation email about joining the webinar.Welcome! You are invited to join a webinar: DecodeME Initial Results Webinar . After registering, you will receive a confirmation email about joining the webinar.
#MEcfs#PwME#DecodeME
ahimsa

Video from Solve ME, about 13 minutes long.

"Hollis Mickey on Pacing with Severe M.E."

youtube.com/watch?v=5LUox41bP9

"Often we say, 'I crashed myself,' or feel frustrated or blame ourselves for exceeding a threshold. I am the biggest culprit of this. But crashing is not always predictable"

"My body is having an unreasonable reaction to a reasonable action."

Transcript:

solvecfs.org/wp-content/upload

YouTubeHollis Mickey on Pacing with Severe M.E.By SolveME
#MEcfs#SevereME#PwME
defel

Leider gibt es aktuell wieder einen schweren #mecfs Fall, bei dem das öffentliche Pflegesystem versagt. Olivera ist für die nächsten zwei Wochen unversorgt, was in ihrem Zustand lebensgefährdend ist. Bitte unterstützt, bspw indem der Fall öffentlich gemacht wird. Falls ihr in der Region Augsburg/München wohnt: Versorgung mit frisch gekochtem Essen gegen Bezahlung, am besten regelmäßig, aber erstmal akut. Die Agentur Haushaltshilfe ist auch bereits involviert und unterstützt.

Christina Koch

Gestern ein Gespräch geführt bzgl der Relevanz, die die #MEcfs #LongCovid Gemeinschaft hat, wenn es um journalistische Texte zu den Themen geht. Ausgangspunkt war der wichtige Artikel "Wir müssen Sie zusammenbrechen sehen" von Marlene Kalt. Ein Thread.🧵 ⬇️

Solche Artikel sind bedeutsam für die Betroffenen, weil sie schonungslos über die Grausamkeiten der Institutionen im Umgang mit den Erkrankten berichten.
woz.ch/2438/long-covid/wir-mue
1/

www.woz.ch · Long Covid: «Wir müssen Sie zusammen­brechen sehen»Menschen, die wegen einer Covid-Infektion oder anderer Ursachen an ME/CFS leiden, müssen schier unüberwindbare Hürden meistern, um überhaupt eine IV-Rente beantragen zu können. Das ist die Geschichte von Svenja Brucker*.
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