Toastie, to LGBTQ
@Toastie@journa.host avatar

"COVID and long COVID are not HIV/AIDS, but our response to both viruses has been to bury them, to cover disabled and high-risk people with dirt. There is silence, skepticism and denial as many of us have become immunocompromised, as thousands have died of complications of long COVID, as millions have died of COVID."

Beautiful essay by columnist Miles W. Griffis reflecting on AIDS, , and the work of artist David Wojnarowicz.

https://www.hcn.org/issues/56-6/how-to-live-and-die-with-long-covid/

timbray, to random
@timbray@cosocial.ca avatar

A white-hot extended burst of rage at the health sector’s reckless obliviousness to the persistence of COVID and its continuing dire impact on public health. Intense and impolite but important: https://www.thegauntlet.news/p/hospitals-are-killing-patients-because

LLS, to mecfs
@LLS@wandering.shop avatar

some days

#MECFS #longCovid

ahimsa_pdx, (edited ) to mecfs
@ahimsa_pdx@disabled.social avatar

#MEAction has extended the deadline for their Millions Missing 2024 fundraiser to June 21.

"We have finally crossed over 50%, so we need your help to finish out this fundraiser strong!"

Donation link:

https://www.meaction.net/millionsmissing-fundraiser-2024/?mc_cid=ebf9727656

Please donate if you can, but only if you are not struggling yourself! ❤️

1/2

@mecfs

#MEcfs #LongCovid #ChronicIllness #Fundraiser #Charity

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

" recognizes that everything seems to cost a little bit more these days...as it is now costing us a little bit more to provide the programming and resources needed for this community. If you have a few extra dollars to give, we would greatly appreciate it."

Full email here:

https://mailchi.mp/meaction/millionsmissing-fundraiser-extended

2/2

@mecfs

tomkindlon, to longcovid
@tomkindlon@disabled.social avatar

New-ish #LongCovid research from Italy:

Longitudinal Exploration of Cortical Brain Activity in Cognitive Fog: An EEG Study in Patients with and without Anosmia:

Free full text:
https://www.imrpress.com/journal/JIN/23/5/10.31083/j.jin2305105

"The results revealed significant differences in the neurophysiological parameters of P300 & beta band rhythms in subjects affected by cognitive fog, and these alterations persist even 8 months after recovery from #Covid19"

@longcovid
#PwLC #postcovid #postcovid19 #longhaulers #PASC #COVIDBrain

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

BMJ e-letter:
"Why I’d rather have a well-researched and well-informed doctor"

Free:
https://www.bmj.com/content/376/bmj.n3102/rr-0

"the NHS simply does not offer any kind of useful care" for ME and [#LongCovid]

#MEcfs #CFS #PwME
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@tomkindlon

Thanks for the link, Tom. We definitely need more doctor education!

Anyone reading this can share the Mayo ME/CFS CME (continuing medical education) with their doctor(s):

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

Half of Long Covid patients meet ME/CFS diagnosis.

The link above is for folks in the USA, but #MEAction also did outreach in May in some other countries:

https://www.meaction.net/2024/05/17/teachmetreatme-celebrating-an-impactful-campaign/

@mecfs @longcovid

#MEcfs #LongCovid #PwME #PwLC #TeachMETreatME

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

Short quote from the letter linked in Tom's post:

"I have sat through countless GP appointments where I have had to explain the basics of Post Exertional Malaise [PEM], the cardinal symptom of ME, before going on to discuss treatment."

I've had similar doctor visits.

It's frightening that so many doctors know so little about ME/CFS.

@mecfs @longcovid

#MEcfs #LongCovid #PEM #MedMastodon #HealthCare

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Here's the News in Brief summary from the Science for ME forum, for week starting May 27:

https://www.s4me.info/threads/news-in-brief-may-2024.38393/#post-535789

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

@mecfs @longcovid

#MEcfs #LongCovid #ChronicIllness #MyalgicEncephalomyelitis #Science4ME

themaskerscomic, to random
@themaskerscomic@forall.social avatar

MICE GET SICK FROM BLOOD FROM Long COVID PATIENTS

Dutch researchers have now published a study (preprint), 31. May 2024 : "Transfer of IgG from Long COVID patients induces symptomology in mice"

https://www.biorxiv.org/content/10.1101/2024.05.30.596590v1
.

COPY FROM THE SUMMARY

🔴 These findings demonstrate that transfer of IgG from Long COVID patients to mice replicates disease symptoms, underscoring IgG's causative role in Long COVID pathogenesis.

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

A thread for sixteen #MECFS, #LongCovid and related research papers from w/c 27th 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.

1/17

mastobit, to random
@mastobit@awscommunity.social avatar
mastobit,
@mastobit@awscommunity.social avatar

@nitpicking You’ve never heard of #LongCOVID? 🤨

MediaActivist, to random
@MediaActivist@todon.eu avatar

I've been working on this for quite some time, and now here it is at last - my latest piece, on how the shock of the pandemic, and its mishandling, has for too long been exploited by right-wing interests: https://www.mediaactivist.com/recovering-from-shock/ #CovidIsNotOver #CovidIsAirborne #LongCovid #AntiFascism

necrosis, to random German
@necrosis@chaos.social avatar

Frage. Hat jemensch mit der Diagnose #LongCovid es schon geschafft, einen #Schwerbehindertenausweis zu bekommen mit mindestens GdB 50 ?

#followerpower

dominiksteiger, to random
@dominiksteiger@swiss.social avatar

#LongCovid

Preprint: Transfer of IgG from Long COVID patients induces symptomology in mice.

https://www.biorxiv.org/content/10.1101/2024.05.30.596590v1

DenisCOVIDinfoguy, to auscovid19
@DenisCOVIDinfoguy@aus.social avatar

Long COVID may have a far-reaching impact on children and teens | dailyprogress.com

"COVID-19 proved it does not have favorites when it comes to age"

"Currently, long COVID is affecting children and adolescents at the highest rate"

#LongCOVID @auscovid19

Source: https://dailyprogress.com/news/local/charity-battle-long-covid-may-have-far-reaching-impact-on-children-and-teens/article_a3505c98-1ddb-11ef-b923-fba39c5e64d6.html

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

ME Research UK

Part 2 highlights from the 1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID, including-

  • History of ME/CFS

  • Clinical assessment of ME/CFS and

  • Immune and metabolic abnormalities

Read: https://www.meresearch.org.uk/1st-international-conference-on-clinical-and-scientific-advances-in-me-cfs-and-long-covid-lisbon-highlights-part-2/

@mecfs

duna, to longcovid
@duna@hachyderm.io avatar
AceyAngel, to disability
@AceyAngel@disabled.social avatar

Disabled and chronically ill person withbsupport needs is raising money for basic necessities, food and an immigration Visa to remain in partner's country.

$50 of $600 raised!
(We're getting there!, please boost if you cannot donate!)

Cashapp:$AceyAngel
PayPal: @ AddriannaWing1

Can also support by purchasing some art

https://ko-fi.com/spaceyangelacey/goal?g=0

#Disability #Health #Healthcare #ableism #ActuallyAutistic #GravesDisease #CoeliacDisease #POTS #LongCovid

tomkindlon, to bluesky
@tomkindlon@disabled.social avatar

In case of interest, I’ve recently passed 1000 followers on:

This is from posting pretty much solely on , and related conditions and to a lesser extent chronic illness in general, which shows it is possible to build up followings on them, in case people either gave up on them or never tried.

@longcovid @mecfs

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

From The Sick Times:

" ‘They bungled it:’ NIH documents reveal how $1.6 billion Long Covid initiative has failed so far to meet its goals "

https://thesicktimes.org/2024/05/31/they-bungled-it-nih-documents-reveal-how-1-6-billion-long-covid-initiative-has-failed-so-far-to-meet-its-goals/

This is a long article, an in-depth analysis of the NIH RECOVER research project.

There's a lot of data to absorb. I have not read the whole thing myself yet.

@longcovid @mecfs

#COVID #LongCovid #MEcfs #NIH #Research

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Possibly the biggest study yet to show #Covid increases the risk of #MEcfs (& #POTS )

"The risks of autoimmune- & inflammatory post-acute #COVID19 conditions: a network cohort study in six European countries, the US, & Korea"

https://www.medrxiv.org/content/10.1101/2024.05.15.24307344v1

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS #PwME #PosturalOrthostaticTachycardiaSyndrome @pots #LongCovid #PwLC @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #PASC #COVIDBrain
@covid19 #Coronavirus
#COVID19 #COVID

tomkindlon,
@tomkindlon@disabled.social avatar

2/

The risks of autoimmune- and inflammatory post-acute COVID-19 conditions: a network cohort study in six European countries, the US, and Korea

https://www.medrxiv.org/content/10.1101/2024.05.15.24307344v1

"In our unmatched comparison, we observed that, following , POTS and ME/CFS yielded higher rates than after negative testing. In absolute terms, we observed & diagnoses to have a similar disease burden as DM [diabetes]"

@mecfs @pots @longcovid @covid19

tomkindlon, to chronicillness
@tomkindlon@disabled.social avatar

Using co-design methods to develop new personalised support for people living with #LongCovid: The ‘LISTEN’ intervention

https://onlinelibrary.wiley.com/doi/10.1111/hex.14093

"The lived experiences of people with #LC, in relation to their condition and their experiences of healthcare services have provided a primary source of evidence”

#epatient #epatients #expertpatient #expertpatients @chronicillness @spoonies #chronicillness #spoonie #chronicdisease @longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
The Untapped Power of “We Don't Know”: Epistemological Humility in the Era of #COVID19

https://journals.sagepub.com/doi/10.1177/23743735241252475

"There are several arguments for how saying “We don’t know” might benefit patients.

@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid @chronicillness
@spoonies #chronicillness #spoonie @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
1/

NatureMC, to Futurology
@NatureMC@mastodon.online avatar

#FollowFriday I recommend @IrishMECFSAssociation if you are interested in studies and #research about #LongCovid #MECFS etc. They provide international informations.

#health #science

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