ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

💙 It's May 12th, International ME/CFS Awareness Day 💙

I'm one of the millions around the world who has ME/CFS.

I'm 63 years old and I've been dealing with ME/CFS for over 34 years, since January 1990.

(attached photo is from last year)

1/n

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

In past years I've shared stories of my formerly active life.

I'm skipping that this year because some folks interpreted my story in an ableist way. They thought I meant:

"See how active and productive I was? We need treatments so we can be productive again!"

No, I only shared my story to push back on false narratives that being fit and healthy protects you from disabling chronic illness.

Anyone can get ME/CFS or Long Covid!

https://www.meaction.net/learn/what-is-me/

2/n

@mecfs

dTram, to books
@dTram@mastodon.social avatar

@lesekreis

Habe gerade "Prinzessin Insomnia & der albtraumhaften Nachtmahr" ausgelesen.
Es hat mir sehr gut gefallen und geholfen beim Sortieren meiner Gedanken. Da es von jemandem mit ME/CFS inspiriert wurde, könnten viele mit oder ohne etwas mitnehmen vom Lesen des Buchs.

DebErupts, to random
@DebErupts@mastodon.social avatar

Reports coming in from all over the world, patients with severe lung scarring, some of whom presented rheumatologic symptoms -- rashes, arthritis, muscle pain -- that often accompany interstitial lung disease. MDA5-autoimmunity and Interstitial Pneumonitis Contemporaneous with COVID-19, or MIP-C for short.

An entirely new COVID-related syndrome | ScienceDaily
https://www.sciencedaily.com/releases/2024/05/240509124724.htm

vlrny, to mentalhealth
@vlrny@disabled.social avatar

Following up on a side chat, what are folks doing for lazy food hacks when yer too tired to cook but don't want to eat junk?

Share yer ideas so others can steal 'em!

#spoonies #chronicIllness #longCovid #chronicPain #mentalHealth #selfcare

Kencf618033,
@Kencf618033@disabled.social avatar

@vlrny
Tuna, flax seed oil, and a few drops of ghost pepper sauce.

#spoonies #chronicIllness #longCovid #chronicPain #mentalHealth #selfcare

franckraisch, to random German
@franckraisch@ruhr.social avatar

ist weiter verbreitet als wir denken. Leider wird viel zu wenig darüber berichtet. Betroffene haben keine Stimme mehr und schaffen es nur ganz selten in die Öffentlichkeit. Dabei müssen sie täglich immer weiterleben, denn sie sterben nicht so schnell an ihrer Krankheit. Ein Leben als Gespenst: https://www.saarbruecker-zeitung.de/saarland/blickzumnachbarn/betroffener-von-long-covid-ich-bin-nur-noch-ein-gespenst-das-lautlos-weint_aid-112438277

s4me, to mecfs
@s4me@med-mastodon.com avatar

Discover , and related news, advocacy and research from w/c 6th May in our News in Brief post.

Find summaries and further reading links for:
News, advocacy and articles
Research news
Crowdfunding
Coming events
Research

https://www.s4me.info/threads/news-in-brief-may-2024.38393/#post-531761

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

CDC post for ME/CFS International Awareness Day, May 12th:

https://www.cdc.gov/me-cfs/resources/awarenessday.html

"From May 6 to 12, CDC will light the Atlanta Visitor Center in blue to recognize ME/CFS International Awareness Day. We are honored to have people with ME/CFS and their caregivers join us to kick off this event."

ME/CFS = myalgic encephalomyelitis / chronic fatigue syndrome

About half of Long Covid patients meet ME/CFS diagnostic criteria

@mecfs @longcovid

augieray, to random
@augieray@mastodon.social avatar

STUDY finds that older individuals can greatly reduce risk by getting BOTH influenza and vaccines. "Those vaccinated with neither COVID-19 nor influenza vaccine had higher risk of long COVID (OR, 1.72; 95% CI, 1.26-2.35) compared to those vaccinated with both vaccines." (That means a 72% higher risk.)

https://www.ncbi.nlm.nih.gov/research/coronavirus/publication/38724010

ToveHarris, to random German
@ToveHarris@mastodon.social avatar

Die Kohärenz der Unmenschlichkeit

"Über die Abwehr von #LongCovid als sozialpolitische Frage, die Moral der Pandemiepolitik, die Niederlage der instrumentellen Vernunft und die Aufgaben einer humanen Gegenrationalität."

Danke an Paul Schuberth für diesen Text!

(Der Text wäre eine Spende an Jungle_World wert + Teilen.)

https://jungle.world/artikel/2024/17/hintergrund-long-covid-die-kohaerenz-der-unmenschlichkeit

#COVID #COVID19 #Corona #CovidIsNotOver #Klimawandel #Klimakrise

ThunderHoneySnow, to random
@ThunderHoneySnow@mas.to avatar

Long Covid can impact "everyone, regardless of age or the severity of one’s original symptoms.³ The largest group of people living with Long COVID is younger than one might think. According to the CDC, U.S. adults ages 35-49 had the highest rates of Long COVID symptoms . . . Plus, a recent study showed that by one’s third COVID-19 infection, patients have a 40% chance of developing long term symptoms"

https://www.modernatx.com/media-center/all-media/blogs/long-covid-awareness-day-2024

melsdung, to mecfs German
@melsdung@nrw.social avatar

"Unser Kollege Tim Braune erkrankte nach einer Corona-Infektion an Long-Covid und an ME/CFS. Nun ist er Rentner statt Chefreporter – mit 49 Jahren."

Die Überschrift sagt dann auch schon alles über das Leid, das diese Erkrankung mit sich bringt. 😔

(Fußnote: Leider kann ich nicht absehen, ob der Artikel für alle lesbar ist oder nicht. Eventuell also Paywall.)

https://rp-online.de/leben/gesundheit/betroffener-von-me-cfs-long-covid-ich-bin-nur-noch-ein-gespenst-das-lautlos-weint_aid-112422735

shroombab, to mecfs German
@shroombab@chaos.social avatar

Ärztinnen, Physiotherapeutinnen, Psychotherapeutinnen, Menschen, die mit und Patientinnen zu tun haben: Nächste Woche gibt es eine kostenlose zweitägige Konferenz mit den Top-Spezialist*innen für dieses Krankheitsbild. Es werden auch Fortbildungspunkte anerkannt. Vielleicht mögt ihr ja teilnehmen, oder es weitersagen!
https://unitetofight2024.world/

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

I've joined the "Teach ME, Treat ME" campaign from

We're asking for ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) to be taught in medical schools and via continuing education (CME)

⭐️ And you can help! ⭐️

Please share this CME with your healthcare providers:

https://millionsmissing.meaction.net/treatme/

Need help crafting an email? Here's a template:

https://docs.google.com/document/d/15jJZ3-eHQq0pVsshfK-E0so2ucvrBWAzK8en82Xfnfo/edit

Thanks ❤️

@mecfs

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

May 3rd presentation by Todd Davenport (about 1 1/2 hours) on MECFS & Long Covid:

"Post-Exertional Neuroimmune Exhaustion as a Bioenergetic Condition"

https://www.youtube.com/watch?v=vuoVAP1CC1Y&t=720s

(link skips part of intro)

I've not been able to watch this myself yet but wanted to pass it on.

@mecfs
@longcovid

edsuom, to random
@edsuom@hachyderm.io avatar

Yesterday I had not much to say. But that doesn’t mean I don’t have much to feel. And it all feels bad out there lately. (“Waves hand generally,” younger folks would say on Reddit.)

Today it has hit me in the stomach real hard that irreparable damage has been done to the lives of millions of people by this destructive and insidious virus that causes . And that’s not just from people with but also those of who still know and and all that shit.

aby, to disability
@aby@aus.social avatar

“A new study has analysed 26 RATs from Australia and Canada, finding only six could effectively detect the lowest concentrations of COVID-19… Researchers from James Cook University (JCU) say they were left ‘shocked’ after an analysis of 26 RATs from Australia and Canada found just six were effective at detecting the lowest concentration of COVID-19. One Canadian test failed to detect the COVID-19 protein entirely at any level of concentration… the six best performing RATs included the Canadian-approved BTNX Cassette, Flowflex, Medsup,... Fanttest, Innoscreen, and Juschek… BTNX, PCL, Medriva, Medomics, PanBio (Australia), PanBio (Canada), SDBiosensor, StandardQ, and Touchbio [are] the least responsive tests.”

https://www1.racgp.org.au/newsgp/clinical/what-are-the-most-reliable-rapid-antigen-tests

h/t to Violet Blue on @Patreon for their [:
https://www.patreon.com/posts/103924380?utm_campaign=postshare_fan&utm_source=android]

violetblue, to random
@violetblue@mastodon.social avatar

New: Cases surging globally (again), KP.2 FLiRT variant dominant in US “defies vaccines,” FDA postpones vaccine meeting, Moderna warns LC risk rises w/each infection, tests rated from best to worst, WHO knew it was airborne, hospital acquired infection = nearly 1 death/day in AU, and more.

Link: https://www.patreon.com/posts/pandemic-roundup-103924380

aby, to disability
@aby@aus.social avatar

“New data shows thousands of patients caught COVID in Victorian public hospitals in the past two years — and hundreds died… Almost one in 10 patients who caught COVID in hospital died… almost six per week, on average.”

https://www.abc.net.au/news/2024-05-06/hundreds-died-catching-covid-victoria-hospitals-testing-masking/103784896

h/t to Violet Blue on @Patreon for their [:
https://www.patreon.com/posts/103924380?utm_campaign=postshare_fan&utm_source=android]

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

This short video (about a minute) from asks people with ME/CFS, "How long did it take you go get diagnosed?"

(ME/CFS = myalgic encephalomyelitis / chronic fatigue syndrome)

https://www.youtube.com/watch?v=tnzz2QwwaMs

I'm "lucky" because it only took me 5 years to get a diagnosis vs. an average of over 8 years (from the 417 responses they got).

What's your answer? 🤔

1/2

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

You don't have to be an ME/CFS or Long Covid patient to help us improve medical education.

Join 's "Teach ME, Treat ME" campaign. Contact your doctor to tell them about the Mayo Clinic CME:

https://millionsmissing.meaction.net/treatme/

Learn more at https://millionsmissing.org

2/2

@mecfs
@longcovid

ChronicIllnessHumor, to mecfs
@ChronicIllnessHumor@mastodon.social avatar
pfred60, to auscovid19
@pfred60@aus.social avatar

Covid News: HBR Long Covid at Work - a managers guide

Quite an compelling look at long covid in the workplace and what can be done if management is willing.

Definitely worth a read.

Of course as always the best way to prevent long covid is to not be infected or do your best to reduce the number of infections. Wear a N95 and watch your air. You want clean air.

@auscovid19


https://hbr.org/2024/05/long-covid-at-work-a-managers-guide

CastlTrAstonDrs, to random
@CastlTrAstonDrs@med-mastodon.com avatar

NIH to open COVID clinical trials to study sleep disturbances, exercise intolerance, and post exertional malaise

https://www.nih.gov/news-events/news-releases/nih-open-long-covid-clinical-trials-study-sleep-disturbances-exercise-intolerance-post-exertional-malaise

bananabob, to cfs
@bananabob@mastodon.nz avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New & ME/CFS research from Australia:

"Investigation into the restoration of TRPM3 ion channel activity in condition: a potential pharmacotherapeutic target" [naltrexone]

Free:
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1264702/full

@mecfs

@longcovid

tomkindlon,
@tomkindlon@disabled.social avatar

2/

"TRPM3 dysfunction in post-COVID-19 condition and ME/CFS participants suggests impairment in ion mobilization and consequently results in Ca 2+ signaling and cell homeostasis disturbance in both diseases. The NTX treatment restored TRPM3 ion channel activity in the post-COVID-19 condition group, facilitating Ca 2+ influx for intracellular signaling pathways."


@mecfs @longcovid

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