daniellewis.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

I’m so tired of unsolicited medical advice. At least lately it’s been things like LDN & stellate ganglion blocks instead of brain retraining & celery juice, but it’s still not helpful & still exhausting trying to respond without either lying about appreciating it or sounding like an asshole

submitted 2 days ago • 8 comments

New Lancet study shows extremely low, 2%, recovery rate from Long COVID. However, those who considered their Long COVID resolved were still in worse health than those who never had Long COVID. www.thelancet.com/journals/lan...

submitted 7 days ago • 12 comments

i’ve tried maraviroc+statins, valtrex, and paxlovid. all were busts. holding out hope for truvada

submitted 5 days ago • 0 comments

Really upsetting stunning article where Avi Nath goes on the record with the names of people at Merck and Bristol Myers Squibb who denied him drugs to test his immune checkpoint inhibitor theory of Long Covid. Post-viral illness still has a serious image problem. cen.acs.org/pharmaceutic...

submitted 7 days ago • 5 comments

Interesting op-ed in @thesicktimes.bsky.social by the chairman of Invivyd, who himself has long COVID $IVVD thesicktimes.org/2025/02/14/i...

submitted 8 days ago • 0 comments

The Sick Times: 'Without clear clinical guidelines in México, people with Long COVID face gaslighting and erasure' 'A lack of information and protocols causes people with the disease to fend for themselves.' thesicktimes.org/2025/02/18/w...

submitted 8 days ago • 2 comments

Opinion: NIH must address the twin crises of long Covid and ME/CFS — together

submitted 22 days ago • 3 comments

Multiple doc friends are saying: influenza A cases are both higher than usual and they're seeing worse cases than usual. Wear a mask in public! If you haven't been for awhile, it's time.

submitted 17 days ago • 31 comments

update: this may have been confounded by brussels sprouts, which i am only now realizing may not be a safe food for me 😫

submitted 17 days ago • 1 comment

Today @thesicktimes.bsky.social: an essay by Linda Fuchs. "When our seventeen-year-old son Nick developed Long COVID... in 2022, like any parents, we were devastated. But for us it hit harder. History was repeating itself." thesicktimes.org/2025/02/06/m...

submitted 20 days ago • 0 comments

Economic Times: “Long COVID costs countries billions of dollars” Long COVID is costing countries billions of dollars in lost productivity and increased health and social welfare costs, economists say. m.economictimes.com/news/interna...

submitted 21 days ago • 4 comments

AAMC: “Congress must support robust federal funding for the NIH” “Research supported by the NIH is the foundation of medical advances that benefit every individual in the country” www.aamc.org/about-us/aam...

submitted 21 days ago • 1 comment

I just checked the Household Pulse Survey Long COVID data page again and it seems to be back up, including the gender & sexual identity breakdowns. www.cdc.gov/nchs/covid19...

submitted 22 days ago • 1 comment

if baked/grilled chicken breasts are one of my only safe foods, is it possible that roasting the chicken instead of baking/grilling it could be causing my current flare? i’m so confused because i didn’t think i was even testing anything

submitted 22 days ago • 2 comments

Looks like the Pulse survey--a regular survey of how many people are living with long COVID--has been taken down from the CDC website.

submitted 22 days ago • 1 comment

NEW: Trump says he's letting "lifesaving" foreign aid continue, but sources tell WIRED that DOGE is still blocking HIV/AIDS relief. Musk brags he's "feeding USAID into the wood chipper." A USAID worker tell us: “At a minimum, 300 babies that wouldn’t have had HIV now do." By @knibbs.bsky.social

submitted 23 days ago • 68 comments

Today @thesicktimes.bsky.social: an honor to have the great @davetuller1.bsky.social writing for us, covering the recent scandal at Cochrane over their flawed ME/CFS review. thesicktimes.org/2025/02/04/r...

submitted 22 days ago • 1 comment

Hi, I am @motherjones.com' disability reporter. In the following weeks, I am very interested in hearing how tariff nonsense impacts getting your meds and medical equipment. My email to get in touch is [email protected]. Reposts appreciated.

submitted 24 days ago • 126 comments

tfw you realize it’s MCAS, not PEM, so you haven’t broken your streak and are only going to be moderately miserable

submitted 32 days ago • 0 comments

Honored to co-organize Keystone this year - please consider submitting new #Longcovid research!

submitted 33 days ago • 1 comment

Some disabled and chronically ill people don't have access to doctors who will write them notes to advocate for them to work from home. That's why blanket return to office mandates that do acknowledge the ADA can harmful, especially as more people become disabled via Long Covid.

submitted 34 days ago • 2 comments

NIH freeze in communication is impacting my long Covid care.

submitted 34 days ago • 1 comment

#PoliPost #LongCovid #PublicHealth #TheAfter The NIH has been ordered to stop all study patient recruitment Incl the RECOVER study investigating Long Covid, which I have been in since 2021 (+ 3 more adjacent observational studies) Future funding requests blocked too This is really happening ⚰️

submitted 34 days ago • 2 comments

Long COVID affects up to 48M in the US, costing $5K-$11.6K per case. Total losses could top $6.5B yearly, with major impacts on health and productivity. Costs rise with more COVID cases. academic.oup.com/jid/advance-...

submitted 34 days ago • 2 comments

dreamt last night that we cured Long COVID. it was a Vyvgart-type drug that blocked autoantibodies. i got the treatment, and then i was able to start mountain biking again then i woke up drenched in sweat and feeling like death 🫠

submitted 34 days ago • 1 comment

Drives me crazy. If you don’t want to fight say so. Stop trying to discourage others from doing the work you’re too jaded to do. You try 50 times and win the 51st. That’s how it works. Progress happens when you find ways to make it matter. And sometimes it’s just your persistence.

submitted 35 days ago • 91 comments

Devastating for scientists and their research, and everyone who benefits from that research. I’m not sure if everyone outside academia is aware that a delay or “pause” in grant funding often means the researchers themselves are lost from the field, along with their expertise.

submitted 35 days ago • 835 comments

I just reached out to my senators about the NIH situation. If you need to find out how much impact NIH has in your state in terms of dollars in and their economic impact here's a link: www.unitedformedicalresearch.org/nih-in-your-...

submitted 35 days ago • 48 comments

Help us finally end subminimum wage. Make your voice heard and demand #FairPay for people with disabilities www.ndrn.org/end-subminim...

submitted 43 days ago • 0 comments

The U.S.’s winter COVID-19 surge continues. Some data sources suggest that we may be close to the peak of this wave, but it will be another week or two before that pattern is clear. bit.ly/3WjEJV1

submitted 43 days ago • 0 comments

I reported on what's at stake if Donald Trump and Congressional Republicans follow through on Project 2025's plan to dismantle the federal Department of Education at @motherjones.com. www.motherjones.com/politics/202...

submitted 45 days ago • 2 comments

I'd probably only trust someone like Jamie Ducharme to write this one. The psychologization of severe-presenting #MECFS and #LongCOVID. Worth a read. 🧪 Props to Rivka Solomon, and other people with lived experience who spoke. time.com/7206080/long...

submitted 43 days ago • 4 comments