bentomn, (edited ) to random
@bentomn@hachyderm.io avatar

“We conclude that long Covid is a real condition,” committee chair Paul Volberding, a professor emeritus of medicine at UCSF, said in a video conference Wednesday. “People suffering from it have to be listened to and have to be believed and deserve the best access possible to the management strategies.”

#LongCovid

Report captures long Covid’s disabling effects and policy challenges
https://www.statnews.com/2024/06/06/long-covid-disability-national-academy-of-sciences/

bentomn,
@bentomn@hachyderm.io avatar

“The Social Security Administration has not yet said what it will do with the report’s conclusions. The agency is in the process of updating its long Covid guidance.”

bentomn, (edited )
@bentomn@hachyderm.io avatar

For those interested I can recommend the recorded webinar.

The committee held a webinar to introduce the 250 page report for those with limited time.

#LongCovid

Edit: link may be broken after 24 hours, sorry

Webinar - speakers & slides 30min, Q&A 30min
https://www.nationalacademies.org/event/42

bentomn, (edited ) to random
@bentomn@hachyderm.io avatar

Op-comic: The long, long road of long COVID - Los Angeles Times #LongCovid
https://www.latimes.com/opinion/story/2024-06-06/op-comic-long-covid

DenisCOVIDinfoguy, to auscovid19
@DenisCOVIDinfoguy@aus.social avatar

New report: More than 200 symptoms tied to long COVID.

"While there is evidence that many people with Long COVID symptoms have improved by 12 months, data beyond that time frame is limited but suggestive that recovery might plateau or progress at a slower rate"

#LongCOVID @auscovid19

Source: https://www.cidrap.umn.edu/covid-19/report-more-200-symptoms-tied-long-covid

Press release: https://www.nationalacademies.org/news/2024/06/new-report-reviews-evidence-on-long-covid-diagnosis-risk-symptoms-and-functional-impact-for-patients

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/

rchusid, to random
@rchusid@med-mastodon.com avatar
Hedgewizard, to random
@Hedgewizard@beige.party avatar

Government messaging - or the lack of it - is telling you that covid isn't worth worrying about any more.

If you've come to think that way, you need to read this.

https://www.ineteconomics.org/perspectives/blog/from-long-covid-odds-to-lost-iq-points-ongoing-threats-you-dont-know-about#:~:text=A%20recent%20study%20in%20the,extra%202%20points%20in%20IQ

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

#covid #LongCovid

LLS, to mecfs
@LLS@wandering.shop avatar

some days

#MECFS #longCovid

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

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

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

ASegar, to journalism
@ASegar@mastodon.social avatar

New Report Underscores the Seriousness of Long Covid by @nytimes

The National Academies said the condition could involve up to 200 symptoms, make it difficult for people to work and last for months or years.

[gift link] https://www.nytimes.com/2024/06/05/health/long-covid-symptoms-recovery.html?u2g=c&unlocked_article_code=1.xU0.ayVW.il373DAVxTcI&smid=url-share

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Extract from comments by Dr Binita Kane in this popular Guardian article today:

"‘I could bench-press 100kg. Now, I can’t walk’: Lucy’s life with #longCovid ."
"Before the pandemic, Lucy Keighley ran a gym, worked as a personal trainer and went on gruelling, exhilarating runs. But after three and a half years of illness, she isn’t sure she will ever recover"

https://www.theguardian.com/society/article/2024/jun/05/i-could-bench-press-100kg-now-i-cant-walk-lucys-life-with-long-covid

@mecfs
#MEcfs #CFS #PwME
@longcovid
#PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PASC #COVIDBrain

ChiaraChiarel, to random French
@ChiaraChiarel@piaille.fr avatar

https://www.theguardian.com/society/article/2024/jun/05/i-could-bench-press-100kg-now-i-cant-walk-lucys-life-with-long-covid

Long article très émouvant, le journaliste a apparemment été sincèrement touché par le sujet.

Interview d'une malade de Covid long et d'un médecin


fehrtrade, to random
@fehrtrade@toot.community avatar

Omg. While our symptoms are different, SO MUCH of this woman’s story could’ve been mine. I was nodding my head the entire way through. She’s captured the essence of Long Covid perfectly.

https://www.theguardian.com/society/article/2024/jun/05/i-could-bench-press-100kg-now-i-cant-walk-lucys-life-with-long-covid

BigJackBrass, to random
@BigJackBrass@vivaldi.net avatar

"The most a long Covid sufferer can do is manage symptoms and pray things get better. Even if things do improve, one activity too many in a day can be debilitating and set you back."

https://www.theguardian.com/society/article/2024/jun/05/i-could-bench-press-100kg-now-i-cant-walk-lucys-life-with-long-covid

#LongCovid

ChrisMayLA6, to Health
@ChrisMayLA6@zirk.us avatar

Here are some heartbreaking stories of Long Covid which, despite effecting around 2M people seems to have largely disappeared from mainstream discussions of health (although it appears on Mastodon more often). Perhaps understandably we seem now more focussed on the ever worsening NHS crisis.

However, when we turn to 'long-term sickness', we'll not get far if we don't have a much clearer idea of how & why Long Covid persists for so many.

#LongCovid #health

https://www.theguardian.com/society/article/2024/jun/05/i-could-bench-press-100kg-now-i-cant-walk-lucys-life-with-long-covid

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