Daniel Lewis
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daniellewis.bsky.social
Daniel Lewis
@daniellewis.bsky.social
1.4K followers 100 following 330 posts
My #LongCovid is mainly #PEM + #POTS + #MCAS
Posts Replies Media Videos
Reposted by Daniel Lewis
paulisci.bsky.social
A List of Things Said to Have Been Ruined by Women

🧵
November 6, 2025 at 8:43 PM
daniellewis.bsky.social
i feel fantastic and i’ve never felt as good as how i do right now
September 27, 2025 at 6:57 AM
Reposted by Daniel Lewis
nicoleclark.bsky.social
it feels so good to write again, to play games again, after the worst year of my life. i picked a ridiculous game (that i love!) to relearn controller skills with, but taking my time makes it possible
aftermath.site/silksong-hol...
A Condition Took Away The Use Of My Hands. Silksong Helped Me Rehab Them - Aftermath
Last year I woke up with the hands of an alien. Every item I grasped fell to the floor like so many grains of sand; every doorknob became a lock I couldn’t open. It didn’t hurt, but hundreds of dollar...
aftermath.site
September 19, 2025 at 2:48 PM
daniellewis.bsky.social
So fascinating that inverting

- Y only is like using a joystick in flight sims
- both X and Y is moving a camera in third-person adventure games
- neither X nor Y is like embodying the character’s head in first-person shooters

Which you invert depends on which type of game most influenced you
aftermath.site Aftermath @aftermath.site · Sep 11
OK, but who is inverting their horizontal controls?
aftermath.site/invert-control...
September 12, 2025 at 7:15 AM
Reposted by Daniel Lewis
aftermath.site
The iWalkFree is a well made product that lets you kinda walk if, like Chris, you have broken several bones in your foot. aftermath.site/iwalkfree-revi...
The iWalkFree 3.0 prosthetic-like hands free crutch. A person's lower body is shown in robins egg blue sweatpants. Their left leg is wearing a sensible flat, like TOMS. Their right leg, is affixed at a 45 degree angle, with a boot on it. The leg is then strapped into a T-shaped device that extends where the knee is bent, approximating a lower leg in a way similar to a prosthetic peg leg. The device is affixed to the leg at 3 different points with several straps and blue buckles. The strap around the thigh is tightened and adjusted with 2 knobs to adjust for the circumference of the thigh. There is an adjustment tab right below the knee for length which allows the lowest part of the device to be lengthened. The "foot" of the device looks somewhat like a the head of a golf club driver. The details are a vivid blue save for the "iWalk" text on the fabric strap that restrains the front of the thigh, next to a blue logo of a person walking.
August 14, 2025 at 5:01 PM
Reposted by Daniel Lewis
immunofever.bsky.social
You can learn more about capillaroscopy and how it's being used in our clinical study MAESTRO, as well as other technologies if you scroll through this thread here of short explainer videos by Caleb Rother, and undergraduate researcher in my lab: bsky.app/profile/immu...
immunofever.bsky.social Michal Caspi Tal, PhD @immunofever.bsky.social · Aug 8
I've been so lucky with incredible undergraduate researchers and summer interns! Check out the first of a series of shorts about the different tools we're using in our MAESTRO study from our summer intern Caleb Rother! First up: capillaroscopy!
youtube.com/shorts/nT9wg...
Can your fingernails tell you about your health? #shorts #health
YouTube video by Vox Sciencia
youtube.com
August 15, 2025 at 7:04 PM
Reposted by Daniel Lewis
loscharlos.bsky.social
Incredibly exciting diagnostic tool potential — @immunofever.bsky.social MIT team is doing nailfold capillaroscopies on #LongCovid patients before and after a NASA lean test, and said the results have been incredibly striking compared to controls.

My results were very abnormal !
August 15, 2025 at 6:14 PM
daniellewis.bsky.social
could ibogaine treat #LongCovid? it looks like it could work on a range of neurological conditions

warning: may cause ataxia, tremors, or nausea. in rare cases, may cause paralysis, seizures, mania, persistent hallucinations, respiratory failure, or heart failure

www.nytimes.com/2025/08/11/u...
Mr. Perry’s hallucinations, induced by the powerful psychotropic drug ibogaine he had taken about 45 minutes before putting on his eye mask, continued for more than 12 hours. The experience was an ordeal. He vomited intermittently and lost much of his body coordination. It took all of Wednesday to recover. But on Thursday morning, Mr. Perry recalled in describing his experience publicly for the first time, “I woke up very clearheaded, with this very warm feeling in my body. I was as calm and as happy as I’d been in memory.”
August 12, 2025 at 12:12 AM
daniellewis.bsky.social
i.imgflip.com/a2pruy.jpg
satisfied seal image macro with text “me in the morning after 32 oz. of trioral”
August 10, 2025 at 5:50 PM
daniellewis.bsky.social
i really don’t need a customer service voice bot to have vocal fry
August 8, 2025 at 6:43 PM
Reposted by Daniel Lewis
tomkindlon.bsky.social
🧵
Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome

Full preprint can be read for free here:
www.research.ed.ac.uk/en/publicati...

#MEcfs #PwME

1/
ABSTRACT Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a common, poorly understood disease that has no effective treatments, and has long been underserved by scientific research and national health systems. It is a sex-biased disease towards females that is often triggered by an infection, and its hallmark symptom is post-exertional malaise. People with ME/CFS often report their symptoms being disbelieved. The biological mechanisms causing ME/CFS remain unclear. We recruited 21,620 ME/CFS cases and performed genomewide association studies (GWAS) for up to 15,579 cases and 259,909 population controls with European genetic ancestry. In these GWAS, we discovered eight loci that are significantly associated with ME/CFS, including three near BTN2A2, OLFM4, and RABGAP1L genes that act in the response to viral or bacterial infection. Four of the eight loci (RABGAP1L, FBXL4, OLFM4, CA10) were associated at p < 0.05 with cases ascertained using post-exertional malaise and fatigue in the UK Biobank and the Netherlands biobank Lifelines. We found no evidence of sex-bias among discovered associations, and replicated in males two genetic signals (ARFGEF2, CA10) discovered in females. The ME/CFS association near CA10 colocalises with a known association to multisite chronic pain. We found no evidence that the eight ME/CFS genetic signals share common causal genetic variants with depression or anxiety. Our findings suggest that both immunological and neurological processes are involved in the genetic risk of ME/CFS.
August 6, 2025 at 8:29 PM
Reposted by Daniel Lewis
ntisec.bsky.social
Breaking NEWS: 🚨

#DecodeME has discovered 8 possible genetic predispositions in the genes of #MEcfs patients that are not found in the control group.
youtube.com/shorts/0S5u8...
DecodeME Initial DNA Results
YouTube video by DecodeME
youtube.com
August 6, 2025 at 9:24 PM
daniellewis.bsky.social
consulted with a new functional medicine doctor who suggested
- brain retraining
- semax
- extracorporeal blood oxygenation and ozonation or other IV ozone therapy
- therapeutic plasma exchange
- testing for and treating potential mold toxicity
August 6, 2025 at 8:13 PM
Reposted by Daniel Lewis
longcovidfam.bsky.social
We see officials saying #COVID cases are rising but healthy kids don’t need to worry. This study found reinfection doubles the risk of Long COVID in kids.

Sincerely, families who believed you when you said our kids weren’t at risk — and now they’re disabled.
COVID-19 re-infection doubles risk of long COVID in kids, young adults, data reveal
The second infection was also tied to a 50% or greater increase in several specific long-COVID conditions, including myocarditis and fatigue.
www.cidrap.umn.edu
August 5, 2025 at 5:03 PM
Reposted by Daniel Lewis
exceedhergrasp1.bsky.social
Great article from @juliametraux.bsky.social in @motherjones.com on the Trump administration ceasing to monitor disability inclusion & axing the 7% goal for govt contractors.

After COVID, there are more highly-qualified working disabled people than ever before.

www.motherjones.com/politics/202...
Labor Department moves to end disability hiring goal for federal contractors
Secretary Lori Chavez-DeRemer plans to axe a longstanding, successful incentive program for disabled workers.
www.motherjones.com
August 3, 2025 at 3:52 PM
daniellewis.bsky.social
*four empty extra-large pill organizers FTFY
August 3, 2025 at 3:51 PM
daniellewis.bsky.social
Signed up! My question for @simmaronresearch.bsky.social: “How did you select the dosage for the trial? Why not use the higher doses that are standard for its on-label indications?”
solveme.bsky.social Solve M.E. @solveme.bsky.social · Jun 17
Sign up for our Sept. 4 webinar w/Solve #MECFS Catalyst Award winner Simmaron Research. Panelists Dr. C. Gunnar Gottschalk, Dr. Avik Roy, & Dr. Stephanie Grach will discuss the study, “Low Dose Rapamycin in ME/CFS, Long COVID, and Other Infection Associated Chronic Conditions.”
👉 ow.ly/oxC850WaYA3
Graphic depicts Simmaron Research and Solve M.E. logos with text promoting a Thursday, Sept. 4 webinar at 3 pm PT/6 pm ET. Title of webinar is "Targeting Autophagy: A Clinical Trial of Low-Dose Rapamycin for ME/CFS, Long Covid, and IACCIs." Pictured are 4 panelists: Simmaron CEO Dr. C Gunnar Gottschalk (Blonde hair, white shirt), Simmaron CSO Dr. Avik Roy (Black hair, blue shirt), Dr. Stephanie Grach (brown hair, blue shirt), and Solve CEO Emily Taylor (brown hair, blue shirt).
August 3, 2025 at 6:36 AM
Reposted by Daniel Lewis
solveme.bsky.social
Sign up for our Sept. 4 webinar w/Solve #MECFS Catalyst Award winner Simmaron Research. Panelists Dr. C. Gunnar Gottschalk, Dr. Avik Roy, & Dr. Stephanie Grach will discuss the study, “Low Dose Rapamycin in ME/CFS, Long COVID, and Other Infection Associated Chronic Conditions.”
👉 ow.ly/oxC850WaYA3
Graphic depicts Simmaron Research and Solve M.E. logos with text promoting a Thursday, Sept. 4 webinar at 3 pm PT/6 pm ET. Title of webinar is "Targeting Autophagy: A Clinical Trial of Low-Dose Rapamycin for ME/CFS, Long Covid, and IACCIs." Pictured are 4 panelists: Simmaron CEO Dr. C Gunnar Gottschalk (Blonde hair, white shirt), Simmaron CSO Dr. Avik Roy (Black hair, blue shirt), Dr. Stephanie Grach (brown hair, blue shirt), and Solve CEO Emily Taylor (brown hair, blue shirt).
June 17, 2025 at 7:00 PM
Reposted by Daniel Lewis
jacysonne.bsky.social
#ChronicIllness
#NEISvoid
Via chronicillspodcast Image of sad chef from The Bear Me looking at my empty pill organizer, knowing I need to fill them up every day until I die.
August 2, 2025 at 5:04 AM
daniellewis.bsky.social
the fact that they introduction to the Wikipedia page for #MCAS says most people who think they have it actually have conversion disorder and nothing in the article mentions #ME or #LongCovid at all is bullshit
August 2, 2025 at 12:01 AM
daniellewis.bsky.social
take my money NOW goddamnit youtube.com/shorts/bQQW1...
These stairs help older people
YouTube video by Unstoppable Gadgets
youtube.com
July 29, 2025 at 4:32 AM
Reposted by Daniel Lewis
juliametraux.bsky.social
63. I think more disabled people would survive climate disasters if their neighbors checked on/helped them.
July 27, 2025 at 5:10 PM
Reposted by Daniel Lewis
juliametraux.bsky.social
61. More non-disabled parents of disabled kids should learn about disability culture and history.
July 27, 2025 at 5:07 PM
Reposted by Daniel Lewis
juliametraux.bsky.social
58. I actually think "brain fog" describes the sensation pretty well as someone who has it, but know some people disagree.
July 27, 2025 at 5:03 PM