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#mecfs

123 innlegg68 deltakere2 innlegg i dag
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Christina Koch

Lesenswert! Die Autorin @privilegienschreck.bsky.social dazu:

Ich habe einen Text geschrieben. In linken Debatten werden psychische Erkrankungen zunehmend politisch verstanden, etwa als Ausdruck von Prekarität, Leistungsdruck und Vereinzelung. Doch was passiert, wenn diese Sichtweise die körperlichen Folgen der Pandemie verdrängt?

#LongCovid #MEcfs #PostCovid

gratis-3958020.webador.de/arti

@freval

gratis-3958020.webador.deDas Virus heißt nicht Kapitalismus / Artikel | Waldmeer | ME/CFS
ahimsa

From Medscape:

"Where Is the Medical Home for Postinfectious Illness?"

medscape.com/viewarticle/where

"Many can trace these symptoms to a specific infection… [but] infectious trigger may not have been confirmed or recognized at the time. They were healthy and active, then they weren’t. Some are severely disabled and can’t work, go to school, or even do simple tasks without feeling depleted and even sicker afterward."

@mecfs

Medscape · Where Is the Medical Home for Postinfectious Illness?Av Miriam E. Tucker
#PostViral#PostCovid#POTS
Replied in thread
Irish ME/CFS Association

⬆️ Content warning: suicide attempt

Mary previously said we could describe it as follows:

A fictionalisation of the struggles of a woman with #MyalgicEncephalomyelitis (ME), and the obstacles she faces on a daily basis as a wheelchair-using mature student.

In Irish with English subtitles

@mecfs
#MEcfs #CFS #PwME @chronicillness
@spoonies
@disability
@disabilityjustice #neisvoid
#chronicillness
#chroniclife
#Spoonielife
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

@marytynan

*
ahimsa

"Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and COVID"

counterpunch.org/2025/08/19/my

COVID has sharply increased the number of ME/CFS cases in the USA but research still badly underfunded

"Assuming a 2% ME/CFS incidence rate, we predict roughly 4.38 million cases of post-COVID ME/CFS …"

Adding these COVID cases to current ME/CFS numbers = about 5.7 million cases of ME/CFS

Annual lost income = between $225 - $305 billion

@mecfs @longcovid

#MEcfs #PwME #LongCovid @PwLC #ChronicIllness

CounterPunch.org · Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and COVIDMyalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), already a long-neglected condition, has been thrust into the spotlight by COVID-19. ME/CFS is
Laszlo

Wir brauchen dringend dringend dringend eine Basisschulung für Krankenhauspersonal zum Thema #MECFS .
Für Betroffene kann normale (auch gut gemeinte) Krankenhausroutine zur absoluten Gefahr werden.

Aus Gründen.

Nyx Mir

Gifts for ME is a US charity launching in early 2026 to provide support items for people with #MECFS.

Their example items like shower chairs and heart rate monitors are integral, but I love the thoughtfulness of the Playdate no-backlight & low stimulus gaming handheld.

giftsforme.org/

Gifts for M.E.Gifts for M.E.Clarinet, Composition, and Engraving music services for composers. An advocate for new music and hosts an annual call for scores to perform music. Freelance music engraver / music engraving services.
Arend (they) 🏳️‍⚧️🍉

I'm learning to cope with my #fibro / #mecfs by adopting the phrase, "Do it tired, just don't overdo it." It seems to work for things I have to do that I'd rather not, like cleaning a mess in the home, and things I don't have to do but rather would, like practicing music.

I'm curious if other folks with #ChronicIllness or #disability can relate, and I'd love to hear what you would have to say on the subject, as I'm fairly new to it.

MEActNOW

From Ronald W. Davis, PhD: Community Symposium on the Molecular Basis of ME/CFS returns!

👉 Register for the Community Symposium:
stanford.zoom.us/webinar/regis

ZoomWelcome! You are invited to join a webinar: Community Symposium on the Molecular Basis of ME/CFS. After registering, you will receive a confirmation email about joining the webinar.The Stanford Genome Technology Center will be hosting a virtual Community Symposium on Friday, September 5th from 8:00am-2:30pm (PST)! You will have the opportunity to hear from speakers who will present their findings on ME/CFS, what they believe is the cause of the disease, and how they are working towards a solution. Join us on September 5th to learn more!
#pwME#MECFS
JB 🐎 :neuro:

Just watched one of the most interesting and helpful scientific talks, hosted by Dysautonomia International on:

Neurological Mechanisms of Itch and the Connection to Dysautonomia - by Dr Brian Kim, Director of the Mark Lebwohl Center for Neuroinflammation and Sensation at Mount Sinai.

Everyone dismisses itching as if it’s trivial, but this lecture dives into the evolutionary origins (and why it has been well conserved all these years), connections with the immune system and even pain.

Ultimately, our illnesses are often forcefully placed in a single category when they actually connect many different biological systems. E.g. Itching, POTS, MCAS, post viral syndromes, heart arrhythmias… they could be seen as neurological, immunological and more. If you see a neurologist, they’ll say it’s neurological; if you see an immunologist and they’ll say it’s immunological. And they’re both right! But as patients, we understand this as conflicting messages, especially because it seemingly excludes other mechanisms or causes. Medical professionals from different fields need to talk MORE with one another! (I dream of the day when our medical systems are fully integrated and prioritise truly personalised medicine ❤️‍🩹)

What I appreciated most about Dr Kim’s talk was that he wasn’t bothered about classifying conditions; instead he advocates that scientists discover functional pathways for symptoms and connect them with drugs to accelerate the journey toward successful clinical trials without getting bogged down in definitions of conditions. I.e. prove a drug can make a tangible difference to patients and the illnesses will be validated and recognised in the process. I think most people with ME would especially appreciate this. We have already been waiting many years for not a lot of progress. DecodeME and the new PRIME network could really catalyse this!

The talk gets quite scientific so not sure how watchable it is for the average audience, but I think Dr Kim goes a good job of breaking concepts down to be more easily understood.

youtu.be/007UszgLeBA?feature=s

#pwME #POTS @mecfs #mecfs #MCAS #dysautonomia

YouTubeNeurological Mechanisms of Itch and the Connection to DysautonomiaAv Dysautonomia International
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