Ezra 👹 @ahhrrr Twitter profile

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Ezra 👹

1 month

Currently #SaltingTheVibe in the recovery room at SF General after a doctor stuck a needle in my spine and removed my spinal fluid so researchers can maybe figure out why I’m not recovered from a “mild” infection two years ago.

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Ezra 👹

@ahhrrr

17 days

I just heard from a friend whose 6-year old is 3 weeks out from a Covid infection and is having tachycardia and extreme fatigue and needed resources and support. I'm just so heartbroken about what our society is doing to kids.

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Ezra 👹

@ahhrrr

13 days

Moderna is now advertising its vaccines based on Long Covid fear. Too bad vaccines don't actually prevent Long Covid.

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Ezra 👹

@ahhrrr

1 month

This is just mindblowing stuff. What a breakthrough.

Scientists Get to the Bottom of COVID’s Worst Pediatric Complication

Scientists at UCSF discovered how kids were developing multisystem inflammatory syndrome in children (MIS-C), a mysterious, life-threatening condition following a COVID infection.

www.ucsf.edu

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Ezra 👹

@ahhrrr

6 months

I have news! I’m excited to announce @lcstudiesdotnet , a new website to help people with Long Covid find research studies and clinical trials. I don’t want to bury the lede: check it out at

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Ezra 👹

@ahhrrr

2 months

ICYMI! I got an ImmunoPET scan at @UCSF and I made a video about what I learned! 💉🩻🤯

Take a look inside my Long Covid body!

I might look healthy – but underneath the surface, a lot is going wrong inside my Long Covid body. Let me show you what I learned from a recent experimental ...

www.youtube.com

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Ezra 👹

@ahhrrr

3 months

i shared this with a bunch of my friends and none of them cared? i don't know why i bother anymore🤷‍♂️

SFGATE

@SFGate

3 months

'Highest concentrations we've ever measured': COVID is teeming in SF wastewater

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Ezra 👹

@ahhrrr

10 months

would have been nice if someone told me that my seasonal allergies made me more likely to get long covid.

Eric Topol

@EricTopol

10 months

Pre-existing asthma or allergic rhinitis were associated with an increase in the risk of #LongCovid , from a meta-analysis of 13 studies

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Ezra 👹

@ahhrrr

2 months

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Ezra 👹

@ahhrrr

8 months

When I went to the ER a few months ago the ER doctor told me that he believed I knew more about what was happening in my body than anyone in the building, himself included. I cried because of his humility, and because there is nobody who can help me. #PodSaveJon

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Ezra 👹

@ahhrrr

19 days

since we're talking about masking in hospitals today, a few weeks ago while my arms and body was immobilized, a nurse removed my mask without my consent to take my temperature. I was livid. it is never okay, in any context, to touch someone else without their consent.

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Ezra 👹

@ahhrrr

6 months

New CDC Household Pulse Survey data is out (survey conducted 1/9-2/5/24): - 6.8% of adults are currently experiencing LC (up from 5.3% in October 23) - 17.6% of adults have ever experienced LC (up from 14.3% in October 23) Details here:

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Ezra 👹

@ahhrrr

1 year

@Bob_Wachter Dr. Wachter, I got infected in September 2022 shortly after receiving my bivalent booster (4th shot in total) and am now disabled due to long covid. I'm 36, male, and was previously healthy. Just a reminder that even if the risk is "low," vax does not prevent disastrous outcomes.

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Ezra 👹

@ahhrrr

2 months

LC patients are so often accused of being anxious and lazy, but here I am, up early, doing prep for my second gut biopsy for a research study, knowing full well how few healthy people would willingly subject themselves to this experience.

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Ezra 👹

@ahhrrr

11 months

Less than an hour into the PolyBio symposium and I can't help but think how damming it is for RECOVER. These small teams have worked together to make so many creative, provocative findings that are pushing the field forward. Where are the breakthrough findings from RECOVER?

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Ezra 👹

@ahhrrr

1 year

@loscharlos Thanks so much for posting this. When I wrote the letter I thought there was no chance they'd publish it...

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Ezra 👹

@ahhrrr

9 months

The last Christmas before I got sick...aka where I would be if not for Long Covid. Instead of being at Joshua Tree I'll be participating in the #LongCovidMoonshot and sending letters to congress about my unhappy holidays.

eIisa

@mildTin

9 months

The last Christmas I had before I got sick.. aka where I would be if not for #LongCovid Instead of being on the beach I'll be tuning into the #LongCovidMoonshot space tomorrow to talk sending holiday cards to congress! I'm from🐨but hope 🇺🇸 friends can send one in for me <3

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Ezra 👹

@ahhrrr

9 months

UCSF Ensitrelvir trial just posted to ! Excited about this one.

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Ezra 👹

@ahhrrr

2 months

I've just been watching for a few minutes but I'm so moved by @thephysicsgirl 's livestream today. Thank you Dianna and Kyle and everyone involved. Please watch.

Physics Girl LIVE with long Covid

Dianna is Live streaming a day in her life as someone suffering from long COVID and ME/CFS. The purpose of the Livestream is to raise money and awareness for...

www.youtube.com

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Ezra 👹

@ahhrrr

3 months

Ok so hear me out...por que no los dos? #JohnVsJonVsME #GreatestMEdicalScandal

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Ezra 👹

@ahhrrr

6 months

From the book Pale Rider by Laura Spinney, about the 1918 flu

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Ezra 👹

@ahhrrr

3 months

I was one of the 155.

Eric Topol

@EricTopol

3 months

A randomized trial for #LongCovid testing Paxlovid (15-days) vs placebo showed no benefit Just published @JAMAInternalMed

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Ezra 👹

@ahhrrr

2 months

@coco_chatel it all makes me so angry. I wish they'd be honest and say that vaccination won't save folks from long covid

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Ezra 👹

@ahhrrr

8 months

I don't just want clinical trials of drugs for Long Covid. I want well-designed, sufficiently powered clinical trials that test the key hypotheses of Long Covid's pathophysiology. I don't want to waste time on marginal treatments or red herrings.

Eric Topol

@EricTopol

8 months

Breaking down the risks and benefit for lecanemab, the amyloid beta-directed antibody vs Alzheimer's drug approved @US_FDA last year. It doesn't look good. @AnnalsofIM

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Ezra 👹

@ahhrrr

10 months

@SalvMattera I experience this too. I did an informal poll on instagram on how many people my friends know with LC - a lot of 0-5. But I know 15+ (and this is just people I knew before getting sick). This is why it's so important to talk about with friends/family

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Ezra 👹

@ahhrrr

2 months

One thing I left out of the video: the immune disfunction it shows is common in many people after a Covid infection - not just people with Long Covid symptoms! So much still needs to be studied.

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Ezra 👹

@ahhrrr

2 months

my friend just launched a line of products that encourage and celebrate masking – and 20% of profits will go to @patientled ! Coupon code for pwLC, too. Check it out!

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Ezra 👹

@ahhrrr

1 month

The NIH pushing Long Covid research forward

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Ezra 👹

@ahhrrr

10 days

I got a haircut last week (readimask!), I hadn't seen my barber since I got sick. I started saying "I don't know if you know anyone with LC..." but then said "oh who am I kidding, I'm sure you know people with LC." And he said: "Yep. A bunch."

Meighan Stone | @meighanstone.bsky.social

@meighanstone

10 days

Another day, another Kafkaesque #LongCOVID moment--stylist who has cut my hair for a decade just emailed all their clients they have Long COVID & now unable to work. They shared links to @thephysicsgirl @LCMoonshot & asked clients to learn more while recovering. It's everywhere.

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Ezra 👹

@ahhrrr

2 months

If you'd like to learn more about what this scan is and what it might mean, I highly recommend this preprint from the team.

Multimodal Molecular Imaging Reveals Tissue-Based T Cell Activation and Viral RNA Persistence for...

The etiologic mechanisms of post-acute medical morbidities and unexplained symptoms (Long COVID) following SARS-CoV-2 infection are incompletely understood. There is growing evidence that viral...

www.medrxiv.org

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Ezra 👹

@ahhrrr

1 year

has there been any research into #microclots contributing to transient ischemic attack ("mini stroke") in people with #LongCovid ? Asking for myself 🥴

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Ezra 👹

@ahhrrr

4 months

This is just some of the cerebrospinal fluid I donated to the @UCSF LIINC team today. I continue to be impressed by everyone on the team – not just because of their outstanding science, but also because they treat participants like me with empathy and humanity.

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Ezra 👹

@ahhrrr

10 months

Today is my birthday. I would like it if you call your congressional reps on Tuesday to demand a moonshot for long covid. You are probably calling your reps already to remind congress that human rights matter! More info and calling guide here:

Long Covid Moonshot

longcovidmoonshot.com

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Ezra 👹

@ahhrrr

1 month

I'm so pleased and hopeful to see today's introduction of the Long Covid Research Moonshot Act (S. 4964) in the Senate. 1/

Bernie Sanders

@SenSanders

1 month

For too long, millions of Americans suffering from long COVID have had their symptoms dismissed or ignored – by the medical community, by the media, and by Congress. Unacceptable. Congress must act now. Yes. It is time for a Long Covid Moonshot.

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Ezra 👹

@ahhrrr

13 days

Also, is it just me or does this whole thing seem in weirdly poor taste? I'm all for people knowing about the risks but I'm a lot sadder about LC than the dogs I know.

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Ezra 👹

@ahhrrr

8 months

Today my (mental health) therapist told me that the things I've shared about my experience with LC helped him support a friend who recently got Covid get much better (and needed) medical care. Telling our stories and sharing what we've learned has an impact. Don't stop.

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Ezra 👹

@ahhrrr

3 months

how I feel when forced to choose between Jon and John #JohnVsJonVsME #GreatestMEdicalScandal

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Ezra 👹

@ahhrrr

5 months

i met a well-known Long Covid researcher today, they were kind and thoughtful and honestly it gave me a lil' hope!

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Ezra 👹

@ahhrrr

19 days

I guess Bernie mentioning Long Covid was too much to hope for.

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Ezra 👹

@ahhrrr

1 month

It is very disappointing not to see either senator from California cosponsor this bill. @Senlaphonza and @SenAlexPadilla , you'll both be hearing from me a lot in the coming days.

Neurologist Mom

@NeurologistMom

1 month

It is disappointing not to see my senator, who has been doing great things for the community, on the list @PattyMurray #LongCovidKids #LongCovid

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Ezra 👹

@ahhrrr

2 months

If you watched my video and want to know more about the PET imaging being donw at @UCSF - check out this paper, fresh off the presses.

Tissue-based T cell activation and viral RNA persist for up to 2 years after SARS-CoV-2 infection

Total-body PET imaging and microscopy analysis of rectosigmoid biopsies reveal prolonged T cell activation and SARS-CoV-2 RNA persistence following COVID-19.

www.science.org

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Ezra 👹

@ahhrrr

13 days

(Yes, vaccines do reduce the chance of getting Long Covid and they are good for so, so many other reasons! But many vaccinated/boosted people get Long Covid, and this ad IMO implies that being vaccinated means you're safe.)

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Ezra 👹

@ahhrrr

6 months

Check out this incredible article by @betsyladyzhets at @thesicktimes for the background and for some analysis I did on the current state of Long Covid clinical trials:

Want to enroll in a Long Covid clinical trial? This new project helps track them. - The Sick Times

A new Long Covid project makes information about clinical trials more accessible to people who may want to participate in research while showing gaps in the current search for meaningful treatments....

thesicktimes.org

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Ezra 👹

@ahhrrr

8 months

So proud of the LC community this week! And so many good things are happening behind the scenes, too

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Ezra 👹

@ahhrrr

8 months

@emilyesfraser I read a blog post today by someone who says they do not have long covid but then goes on to describe PEM that has existed for three months since their infection. We are failing so many.

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Ezra 👹

@ahhrrr

11 months

@sunsopeningband as someone on the milder end of things it makes no sense to me at all. I can easily walk six minutes. I can probably run for six minutes! What I can't do is feel good several hours later

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Ezra 👹

@ahhrrr

8 months

too busy livetweeting to think...but this was a good hearing. SO many thanks to the panelists, including @AngelaMSWinCA and @zalaly , and to @SenSanders for chairing. I think the gravity and severity of the situation was well-communicated.

Patient-Led Research Collaborative

@patientled

8 months

Good morning! We’re live tweeting today’s hearing on Long Covid from the Senate Health, Education, Labor & Pensions Committee. Follow this thread – or watch the live stream here: #LongCovid 1/

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Ezra 👹

@ahhrrr

1 year

@ahandvanish I got long covid from an infection right after getting my bivalent booster! This is misleading to the point of malpractice

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Ezra 👹

@ahhrrr

6 months

@ahandvanish So infuriating how leaders keep saying rates are going down when we have evidence to the contrary.

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Ezra 👹

@ahhrrr

26 days

I'm very sad about this. My driver license is up for renewal and for the first time in my life I am not an organ donor. I don't believe my organs are healthy enough to donate, and I don't trust the system to protect a potential recipient.

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Ezra 👹

@ahhrrr

2 months

For the last six months, inspired by @LCMoonshot , I’ve been calling my congresspeople every week to share my LC experience. I post my calls elsewhere usually (ig/156.long.covid.calls) but wanted to share this week’s call here, too.

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Ezra 👹

@ahhrrr

9 months

I have to say that the people I've met who also have post-acute infection syndromes (and other related chronic illnesses) are some of the kindest, most thoughtful people I've ever met. None of us want to be here, but the shared sense of solidarity is deeply meaningful to me

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Ezra 👹

@ahhrrr

8 months

this recent post by @julia_doubleday really helped me wrap my mind around why folks like @jonfavs are so quick to dismiss the pain and suffering of people in his own community. #PodSaveJon

How the press manufactured consent for never-ending COVID reinfections

Continual reinfection was not the "new normal" Biden advertised. How did we get here?

www.thegauntlet.news

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Ezra 👹

@ahhrrr

7 months

Got the chance to meet IRL today with a group of long covid friends & allies and it was such a powerful, moving experience to feel seen and not have to explain what this ordeal has been, and continues to be

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Ezra 👹

@ahhrrr

1 year

today's the one-year anniversary of the infection that gave me long covid. how many more years will it be until there is a treatment?

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Ezra 👹

@ahhrrr

2 months

So, I think it’s time we change the narrative. People with LC and other chronic conditions are not anxious or lazy. They are brave. They are powerful. And they are leaders, pushing society and science forward.

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Ezra 👹

@ahhrrr

4 months

@mileswgriffis @betsyladyzhets - Participate as healthy/recovered controls in research studies (LIINC is looking for help in this area)! - Normalize talking about Long Covid, and spreading the word about what it means to have LC (it's more common than many folks realize)

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Ezra 👹

@ahhrrr

6 months

just did my calls for the @LCMoonshot campaign and got three live humans for the first time ever

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Ezra 👹

@ahhrrr

6 months

In closing, this project has been an upaid labor of love for the last six months, and I'm nervous and excited to share it with you all. Please be patient with me as I work to make this something useful for the community!

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Ezra 👹

@ahhrrr

19 days

also, there was no clinical need, urgent or otherwise, to take my temperature.

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@ahhrrr

2 months

@PutrinoLab @CDCDirector I got vaccinated and STILL got long covid, almost two years in – what advice would she have for me now to get my life back?

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Ezra 👹

@ahhrrr

2 months

@mileswgriffis And even the most serious researchers don’t have any authority over the non research staff in clinics. There have been unmasked staff present even at visits I’ve done with masked researchers.

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Ezra 👹

@ahhrrr

2 months

@sun_in_winter12 @UCSF Honestly, this info brought me a lot of validation - I hope it brings validation to others as well!

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Ezra 👹

@ahhrrr

3 months

@healingfromlc Yes, it has raised my baseline for triggering PEM and has lowered the intensity of my PEM. It also has reduced cognitive dysfunction and pretty much eliminated my depression. I wish it did more, but the extra functionality it gave me is making a big difference.

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Ezra 👹

@ahhrrr

5 months

In the last week I've talked to three people IRL who had extended (1-5 years) of post-acute fatigue after suspected Dengue infections. I know it's anecdata but...that sure seems like a lot of post-acute Dengue.

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Ezra 👹

@ahhrrr

11 months

the number of people I know with "just one weird thing" happening since they got covid...

Salvatore Mattera

@SalvMattera

11 months

I do think 15-30% of people have long COVID. It's just mostly mild (one or two symptoms). It's bothersome, but doesn't leave them bed-bound, so they don't talk about it. Often, they don't even link it to COVID.

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Ezra 👹

@ahhrrr

9 months

Thinking a lot right now about the people who are gonna get long COVID for Christmas. 💔

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@ahhrrr

1 year

another sunday evening spent thinking about the years, the decades, the centuries that have passed, and the untold millions of people who have been suffering, pleading for help and recognition that never seems to come

A Sudden Illness

From 2003: Laura Hillenbrand on the mysterious sickness that seized control of her life and wouldn’t let go.

www.newyorker.com

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@ahhrrr

23 days

It was such a pleasure to work with this team to put in writing some important recommendations for Long Covid clinical trials. We need to ensure that trials are measuring the right things, and designed in ways that will have the biggest impact.

Julia MV

@julialmv

23 days

Guidance for designing and optimizing #LongCOVID clinical trials from @patientled including me: Includes considerations for therapeutic candidates, participant inclusion, endpoints, and more!

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Ezra 👹

@ahhrrr

3 months

@weeklyshowpod You should definitely cover Long Covid and ME. I'm spending my saturday feeling like crap figuring out to edit instagram reels to see if I can get anyone to care about ill people like me. We could really use your help.

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@ahhrrr

9 months

@cjmaddison I truly wonder how many common diseases might be in some way the long-term consequences of earlier infection. I have a feeling that it's not just MS.

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@ahhrrr

19 days

Oh, this was for a procedure I got as part of a Long Covid study. (The nurse wasn't part of the study team. When I bought this up later to the study team, they were incredibly supportive and corrected the issue when I went back for a follow-up procedure).

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Ezra 👹

@ahhrrr

8 months

@loscharlos @jonfavs @SenSanders made me chuckle, thank you

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@ahhrrr

8 months

@coco_chatel I did GOTV work for the Dems in the last few elections and now I can't because I need to devote my limited energy from long covid to self preservation and recovering from part time work so I don't ruin my health or finances.

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@ahhrrr

9 months

@postviraltrials @loscharlos @healingfromlc Yes, I'm listening in to an NIH ME/CFS webinar this morning. Michal Peluso said that recruiting is almost complete and they hope to have a readout by the end of 2024. He also mentioned an upcoming trial in 2024 with Shionogi's ensitrelvir antiviral.

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Ezra 👹

@ahhrrr

2 months

@bhanlon15 @MichaelPelusoMD @UCSF I'd really like someone in RECOVER to tell me how they expect video games to solve the dysfunction shown in my PET scan!

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Ezra 👹

@ahhrrr

1 month

If you haven't submitted a case on CURE ID yet, please do! This is a great initiative being run by the US government – one of the best ways to generate evidence for future clinical trials!

CURE ID

@id_cure

1 month

Thank you to the #LongCovid community that has rallied- CURE ID now has 400 approved cases! Check out the detailed data to see what others have tried and whether it helped them or not. Submit your own treatment experience and help us get to 1,000 cases!

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@ahhrrr

10 months

@SalvMattera Agreed about the impact, but IMO under the current working definitions of long covid, that's just very mild long covid. Just because it doesn't bother you doesn't make it not long covid. But I hear where you're coming from.

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@ahhrrr

1 year

@loscharlos Thanks! That means so much coming from you. Was very active here back in the day but generally don't post anymore. Just unlocked my account today for the first time in many years.

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@ahhrrr

17 days

This paper was a labor of love and I've been so gratified to see researchers running LC clinical trials out in the world already refer to it!

Patient-Led Research Collaborative

@patientled

17 days

We’ve released a new paper on designing & optimizing clinical trials for #LongCOVID ! Strong, high-impact trials are critical & most current ones are insufficient. The paper gives guidance on treatments, outcomes, design, participant inclusion, & more. 1/

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@ahhrrr

13 days

(also vaccine injury is real and unfairly marginalized)

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@ahhrrr

6 months

Enter ! Behind the scenes, the site downloads data about Long Covid research studies from , but shows only the most relevant information for people with Long Covid.

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@ahhrrr

8 months

@emilyesfraser Yep. And my dad's dog with a chronic cough is getting better care than I am.

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@ahhrrr

3 months

@julia_doubleday yes, at several "testing required" events I went to in 2022 all of the attendees tested but as far as I could tell there was no protocol for the support staff. blew my mind

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@ahhrrr

2 months

Biopsy complete. Now feeling crampy and crashy and planning to rest all day. And, duh, of course I used appropriate PPE. #YallMasking

Julia MV

@julialmv

2 months

Yes, I like to wear my old long distance running shirts (and an N95, obvi) to ME/CFS drs appts. #YallMasking

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@ahhrrr

9 months

Wrote my unhappy holiday cards for the #LongCovidMoonshot action today! @BarbaraLeeForCA @Senlaphonza and @AlexPadilla4CA will be receiving my note, this week's letter to @POTUS from @patientled and others, and @mildTin 's amazing fact sheet!

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@ahhrrr

4 months

not all heroes wear capes (they wear masks)

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Ezra 👹

@ahhrrr

3 months

Long Covid sucks so much y’all

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Ezra 👹

@ahhrrr

6 months

Apropos of nothing, Hanlon's Razor is a thing I think about a lot: "Never attribute to malice that which is adequately explained by stupidity."

Hanlon's razor - Wikipedia

en.wikipedia.org

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@ahhrrr

1 month

This bill would have NEVER been introduced were it not for the ill patients using their limited energy to relentlessly demand the support that is deserved. So many thanks to everyone for their contributions. 6/

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@ahhrrr

3 months

the kicker of this incredible piece by @betsyladyzhets sums up what so many feel: “If you don't like our criticism, if you think you can do things better, demonstrate it with the $500 million.” - @loscharlos We're waiting. And suffering while we wait.

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

In February 2021, the National Institutes of Health launched a new $1 billion initiative to study Long Covid, a chronic disease that has changed the lives of millions of Americans. Three years later,...

thesicktimes.org

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Ezra 👹

@ahhrrr

2 months

This essay is from two years ago but every word still applies to today.

You Are Not Entitled To Our Deaths: COVID, Abled Supremacy & Interdependence

[Image description: Photograph of a melting iceberg taken from above. White pieces of ice of varying sizes of all different shapes float over dark blue water. The ice is white, with shades of grey …

leavingevidence.wordpress.com

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Ezra 👹

@ahhrrr

4 months

I just wrote a @LCMoonshot letter: Long Covid research funding in the FY25 budget. Write one here:

Long Covid research funding in the FY25 budget

Over the next few weeks, the Senate and House will be holding hearings and drafting appropriations bills that will determine how money is spent in the next fiscal year. Congress needs to hear from us...

actionnetwork.org

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Ezra 👹

@ahhrrr

6 months

Why build this site? It all started back in September when I read this tweet:

Meighan Stone | @meighanstone.bsky.social

@meighanstone

1 year

@SawyerBlatz @postviraltrials @HopkinsMedicine @dsethlewis @JadenGeller Dream is v1.0 does daily API calls for Long COVID/PASC & few other target keywords, puts into clear chart, hyperlinks to application emails or websites. v2.0 parses into better everyday language. v3.0 simple screener questions tool "do you have PCR test?" to refine user results?

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Ezra 👹

@ahhrrr

6 months

There are so many additional filters and features I’d love to add – this is just scratching the surface of what’s possible. But I wanted to get the site out into the world now, to get feedback and thoughts from the community.

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@ahhrrr

8 days

@atranscendedman The volume of papers is unprecedented. And there is a lot of high quality work coming out. But the lack of funding for treatment trials is a huge, unnecessary limiting factor.

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Ezra 👹

@ahhrrr

6 months

@meighanstone 's suggestion stuck with me. As a person with Long Covid, I’ve found it really meaningful to be able to contribute to research studies – but it is HARD to figure out what studies exist, and which ones I can enroll in.

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Ezra 👹

@ahhrrr

2 months

@PutrinoLab my dad's dog with persistent kennel cough gets substantially more care and respect than I do with Long Covid. It's maddening.

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Ezra 👹

@ahhrrr