Jennie Spotila

Outstanding article from ⁦@thesicktimes⁩ diving into NIH documents and proving how NIH is failing people with Long Covid. thesicktimes.org/2024/05/31/the…

Don't believe the New York Times: Piranesi and Jonathan Strange & Mr Norrell are two of the best novels of the century. And today they're both on sale for kindle. If you haven't yet read these extraordinary books, now is your chance.

Believe in yourself like visitors who believe they can pet a bison.

@NeleHelena What does “equal” mean? 50/50 share of household duties? 50/50 financial contribution? Then very unlikely. Equal consideration/respect/role in decision making? Possible, but hard work.

I agree with the comments that say... Healthy: possible but rare Equal: not possible (even when it's a relationship between chronically ill people / but I also don't think relationships are equal in general due to some many things)

So romantic relationships and severe #MEcfs and such illnesses. Do you think it's possible to have an equal and healthy relationship under those circumstances?

@CHRomatowski @rhymeswithvery @bhanlon15 @NIHDirector ME advocates/allies have a vastly different definition of what “studying ME/CFS for decades” looks like, compared to what NIH thinks it looks like. And in my opinion, NIH IS blowing the “once ever opportunity” of Long COVID too.

Tuning in this morning to the NIH ACD. Dr. Koroshetz presenting on Long COVID, ME/CFS and RECOVER

@sunsopeningband We have at least one blue jay that can mimic a red-tailed hawk PERFECTLY. The bastard sits in the tree by our patio and does it to scare the other birds from the feeders. Works every time.

And maybe I spend too much time with the birds outside to have figured this all out lol.

Today I saw a mockingbird in my neighborhood, rare-ish in my 'hood even though I see many in the Delta just a short distance away, but I only spotted him because he was mimicking the chirp of the juvenile red-tailed hawks that are relatively common in my 'hood. Birds are wild.

@sunsopeningband Aw, congratulations Todd!

Some personal news: 23 years today married to my One and almost 30 years together. I’m so grateful she chose me and, for whatever reason, continues to make that choice every day. She’s a remarkable woman and the genesis of everything good in my life. ❤️ music.youtube.com/watch?v=GJnem-…

@betsyladyzhets @thesicktimes Betsy, I am truly honored to hear that! 🙏🏻

@jspotila @thesicktimes Thank you for sharing the article! Your past work has been very inspirational to me in doing this reporting, I hope it can be part of the same legacy in pushing for accountability from the NIH

Outstanding article from ⁦@thesicktimes⁩ diving into NIH documents and proving how NIH is failing people with Long Covid. thesicktimes.org/2024/05/31/the…

@AshHultman 100%! Koroshetz has made statements nearly identical to this multiple times before.

This! "Only heavy public pressure will lead to change" how NIH responds to post-viral syndromes

@emmydugas @WildNycgirl More on Dr. Collins @jspotila by Jennie Spotila from 2018. All The Time and None At All occupyme.net/2018/04/25/all… @MEActNet @NIHDirector @exceedhergrasp1 @MEawarenesshour #myalgicencephalomyelitis #mecfs #neisvoid

@julierehmeyer @sunsopeningband @thesicktimes Aw Julie! 🙏🏻 Nothing compared to you!

@sunsopeningband @jspotila @thesicktimes Yep. I’m in awe of everything you’ve accomplished.

@CHRomatowski @sunsopeningband @thesicktimes Thank you @CHRomatowski! This is very kind of you to say.

@sunsopeningband @thesicktimes That means the world to me, @sunsopeningband, truly. 🙏🏻

@jspotila @thesicktimes Jennie, if I may, don’t sell yourself short. Not only has your work been informative and impactful, you’ve navigated a frustrating and slow FOIA process all while trying to live with a chronic disease. I think you walked so many others can run and I appreciate your work a lot. 🙌🏻

@jspotila @mfairma @_diatoma @dsethlewis @exceedhergrasp1 @Rivkatweets @minadjenkins @RFH1955 @TapanuiFlu @marydimmock 🔥 Me too, @jspotila. occupyme.net/2017/11/01/%EF… “If Dr. Nath is completely unaware that people – including government scientists – have used the word “tired” to belittle, demean, & dismiss people with ME, then the NIH communications team needs to get on that and educate the man.”

Jennie Spotila’s investigative work over the past two decades has been extraordinarily helpful to the #MEcfs community. Without her we wouldn’t have fully understood what was going on with the NIH and its utter neglect and abandonment of the ME community. Thank you @jspotila !!

@mfairma @_diatoma @dsethlewis @exceedhergrasp1 @Rivkatweets @minadjenkins @RFH1955 @TapanuiFlu @marydimmock From 2017, the time Dr. Avindra Nath publicly referred to his staff as “Team Tired.” I’m actually more mad about it now than I was seven years ago. occupyme.net/2017/11/01/%EF…

@_diatoma @dsethlewis @exceedhergrasp1 @Rivkatweets @minadjenkins @RFH1955 @TapanuiFlu Would love to see @JSpotila @exceedhergrasp1 @marydimmock answer this question.

What’s an event in the history of the #GreatestMEdicalScandal that you find infuriating or just freaking unbelievable?

I hope the @thesicktimes work is more effective for people with Long Covid than mine has been for people with ME. The culture at NIH around post-viral syndromes is entrenched and dysfunctional. Only heavy public pressure will lead to change.

My own work on NIH documents related to ME funding is much smaller but with similar findings, including the reliance on non-experts, marginalization of patient engagement, and money wasted on overhead and low priority research.

If you can, please give @davidtuller1 a hand and contribute to his crowdfund campaign!