Going to try to pick up where @ahandvanish left off on live-tweeting today's NIH #LongCovid workshop

"We're really having an epidemic of this chronic critical illness and it deserves attention as well." - Dr. Terri Hough, OSU on pulmonary sequelae of #LongCovid.
GI/liver symptoms in hospitalized patients prevalence:
- Dr. Hashem El-Serag (Baylor)
GI in #LongCovid –– COVID in stool. From below slide: "as long as 5 weeks after negative respiratory PCR."

@itsbodypolitic patients have had difficulty accessing COVID stool testing but have been asking for it for months.
Study of 15 hospitalized patients that examined intensity of shedding and the gut microbiome.

Drop in good, rise in bad stuff in microbiome after COVID.
"Entry of virus into gut may be associated with disruption of gut or dysbiosis."

Connections to IBS
We need longitudinal follow-up to help answer these questions on #GI in #LongCovid:
Metabolic #LongCovid –– Dr. Hashem El-Serag (Baylor)
Rheumatology and Immunology in #LongCovid with Judith James MD PhD

Talking about MIS-A, APS, vasculitis, fatigue & malaise
I'm particularly interested in APS antibodies in COVID-19. My wifi just cut out for a minute (agh!).
Role of endothelial cell in #LongCovid vasculitis.
#LongCovid fatigue, malaise, myalgias and arthralgias. (aghh my wifi cut out again 😫)
We may need to look more at prolonged lymphopenia. She says it may be found in up to 70% of COVID patients.
Autoantibodies in #LongCovid. My wifi is really cutting out so I think I need to stop live tweeting because I'm missing a lot of this.
Considerations going forward for looking at immunology and rheumatology in #LongCovid
Peter Rowe on pediatric #LongCovid. Dr. Rowe studies ME/CFS at Johns Hopkins.

Shout-out to @davidtuller1 –– Dr. Rowe mentioned the press on this issue of #LongCovid in children.
Dr. Rowe: orthostatic intolerance must be evaluated with standing test in the clinics when evaluating #LongCovid –– *ALL* #LongCovid patients he's saying.
Dr. Rowe: "We think joint hypermobility is part of the pathophysiology of the orthostatic intolerance."

New technique of measuring cerebral bloodflow is important. In #MECFS –– over threefold reduction in brain bloodflow compared to healthy controls.
Dr. Rowe encouraging any provider new to #LongCovid to review Institute of Medicine report on #MECFS for diagnostic criteria.
Dr. Rowe talking about wellness score. Mean wellness score in #MECFS: 50. Health patients: 90. #LongCovid patients: 40. 😳 (Wellness = 100 well, 0 unwell.)
Dr. Rowe describing a case study: an adult female patient who is a PhD scientist. #LongCovid meant "she couldn't make sense of her bank statement" or "follow a TV show" anymore. A PhD scientist.

Goes on to describe that this patient experiences significant #PostExertionMalaise
Dr. Rowe describes a 19-year-old univ. student who ran on cross country team. Now plays a backyard game of cornhole and gets 3 days of #PostExertionMalaise.
Describes patients with #LongCovid and #MECFS
Dr. Rowe talking about #MastCellActivationSyndrome in these #LongCovid patients
Dr. Rowe: stop recommending GET. We must not make the same mistakes as we did decades ago with this, again with #LongCovid.
Dr. Rowe knocked it out of the park with his segment just now. Wow. 👏
Oh, and Dr. Rowe made sure to clarify here: this patient's symptoms and #PostExertionMalaise started far before deconditioning could have been a consideration here. (Remember this patient was the cross country athlete before #COVID.)
Dr. Rowe: on allergic manifestations of #LongCovid. Nod to Dr. Afrin's work on #MCAS. Need more research here. Mentioned trials on famotidine and antihistamines during acute COVID
Q&A session: are there studies on sleep disorders in #LongCovid? Both Dr. Nath and Terri Hough (OSU) say this is needed. Terri Hough says sleep issues do a great job knitting all the symptoms together. (Her quote was really good but I didn't catch the whole thing)
Q&A: answer on immunity from Judith James –– we need to expand looking at antibody responses. Acknowledges early antibody tests were not ideal. (@itsanginLA I thought of you here)
Q&A: Q for Dr. Judith James, rheum/immune. Dr. James: We need many large cohorts to study this area: We're seeing some individuals developing multiple antibodies, higher titer antibodies, or disease-specific antibodies...
...Con't Q&A on that answer: It's important that we follow those patients longitudinally to see if they develop other autoimmune diseases later.
Q&A: CPET question. Dr. Rowe: 2-day consecutive CPET has been used to document disability in #MECFS because they show a reduction of work capacity even though putting forward maximal effort. 2-day CPET may be a helpful tool in measuring #LongCovid
Watching today’s event + live tweeting the part I covered took all my energy today. It all happened so fast that I didn’t have time for image descriptions. If anyone wants to help with writing image descriptions for the slides I would really appreciate it!

• • •

Missing some Tweet in this thread? You can try to force a refresh

Keep Current with Alison Sbrana

Alison Sbrana Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!


Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @AlisonSbrana

4 Dec
Watching day 2 of @NIAIDNews #LongCovid workshop. Right now: breakout sessions. I'm watching the neuro breakout session, led by Dr. Komaroff. @ahandvanish is there representing #LongCovid patients with @itsbodypolitic. Tune in: videocast.nih.gov/livew.asp?live…
@NSU_INIM's Dr. Klimas spoke about early in the meeting about the history of #MECFS and challenges in developing diagnostic criteria for #MECFS without biomarkers, and the similarities and differences to #LongCovid. I felt represented by her discussion as a #PwME
@NSU_INIM's Dr. Klimas also emphasized the need for separating
- hospitalized COVID patients with organ damage that is causing neuro symptoms after COVID
- #LongCovid which typically is in non-hospitalized cases
Read 103 tweets
9 Aug
Young & healthy folks: I know the media has told you that you need to be safe to protect the high-risk around you from #COVID19 . But please, you must protect *yourself* also. Here's why – a thread:
6 years ago, I was a young, healthy, active person when I got a virus. 1/8
The virus itself wasn’t a severe case. I was never hospitalized from it. 2/8
#postCOVID19 #MyalgicEncephalomyelitis
Read 9 tweets

Did Thread Reader help you today?

Support us! We are indie developers!

This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Too expensive? Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal Become our Patreon

Thank you for your support!

Follow Us on Twitter!