ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

From Yale Medicine:

"Long COVID, ME/CFS and the Importance of Studying Infection-Associated Illnesses"

https://www.yalemedicine.org/news/long-covid-mecfs-and-the-importance-of-studying-infection-associated-illnesses

"Research on Long COVID may also shine light on the underlying causes of myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS."

@mecfs @longcovid

#LongCovid #MEcfs #POTS #Dysautonomia #Neuropathy #OrthostaticIntolerance

tobi82, to random German
@tobi82@mstdn.science avatar

Gemeinsamkeiten von und 😬

In ähnlicher Weise berichten die meisten Patienten mit Multipler Sklerose (MS) auch über Müdigkeit und kognitive Defizite. MS ist eine Autoimmunerkrankung, und kognitive Defizite wurden mit kortikalen und subkortikalen strukturellen und funktionellen Hirnschäden in Verbindung gebracht.

LongCovid steht unter Verdacht eine autoimmun Erkrankung zu sein.

- niemand ist bisher immun.

https://www.nature.com/articles/s41598-024-60368-0

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Here's the latest News in Brief from the Science for ME forum for week starting May 6:

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

The news summary includes articles, videos, research, advocacy, coming events, and more.

Note: A transcript from the CDC's May 6th ME/CFS webinar is now available:

https://www.cdc.gov/me-cfs/pdfs/23-sec-cdc-program-update-5-3-24.pdf

@mecfs @longcovid

#MEcfs #LongCovid #ChronicIllness #MyalgicEncephalomyelitis #Science4ME

RustyBertrand, to random
@RustyBertrand@vivaldi.net avatar

My computer will not connect to Bluetooth, light bulb, noise blocking headphones or anything. It never has, it's pretty much only used for streaming. Brand new.

Does it need to be reinstalled? Or do I have to waste my time going to the computer store, just to wait for hours for them to point out some stupid mistake I made.

It uses Microsoft Edge. I just use an evil Chrome browser to stream movies and music because the computer has no virus protection. Lots of MacAffe ads though.

My brain died from awhile ago, and the things I remember about computers are probably outdated. My world keeps getting smaller.

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

A thread for eight , and related research papers from w/c 6th May 2024.

Links are to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Inclusion does not equal recommendation.

1/9

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

A double whammy… patients face medical debt after insurance companies deny claims…

https://www.nbcnews.com/health/health-news/long-covid-symptoms-treatment-insurance-coverage-rcna72012

davidaugust, to Health
@davidaugust@mastodon.online avatar

Do you know what killed more than 19,000 Americans in the last 3 months? Covid. About 9 an hour. Many many more than that have been hurt, often permanently.

That’s a lower number than previously, yet the risks remain.

Stay home when ill, wear masks in crowds and inside, stay up to date on your vaccinations and improve ventilation (ex: opening windows) to stay healthier.

Source: https://covid.cdc.gov/covid-data-tracker/#maps_deaths-3-months

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

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

Sharing information about the Mayo ME/CFS document (Diagnosis and Management of ME/CFS) - and the associated CME (Continuing Medical Education) - is a great way to immediately improve patient care for people with ME/CFS.

Remember, roughly half of Long Covid patients meet the ME/CFS diagnostic criteria.

Need help crafting an email to send to your doctor? Here's a template:

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

5/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 #LongCOVID risk by getting BOTH influenza and #COVID19 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 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

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

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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