If genuine and up to date, this is disappointing on multiple levels (see thread below).

Best news is Bateman Horne Center's Lucinda Bateman as co-PI.

I'm looking forward to sharing more about the Long COVID Wearable Study and answering all your questions later today!

Can't wait to read it tomorrow!

'Disability Intimacy has the unfair expectation to be everything for everyone, to answer the question of desirability for an entire community that is not monolithic.

Wong refuses to shut out the 'other' in favor of the conventionally digestible.'

NIH, 4/24/24: 'NIH RECOVER makes long COVID data easier to access'

'Deidentified data from thousands of adults with long COVID are now available to researchers'

nih.gov/news-events/ne…

The biggest health care victory in my #LongCOVID journey yet - a wheelchair with power assist!

(after over a year of assessments & insurance denials)

I am so excited to be able to go up ramps without exhausting myself!

Mobility aids are such a crucial part of LC and ME care.

Would like to see this conceptual shift more broadly -

PEM is not a symptom, but a physiological state where a *lot* is going wrong; many symptoms can be part of that PEM state. #longcovid

I miss running so much too.

It was my go-to way to de-stress, solve tough problems, and socialize.

I still self-identify as a runner even though I haven't been able to run for years (unless you count my dreams).

It's wild how many coping mechanisms #LongCOVID can take away.

Today, we’re launching a new in-app research study into reinfections with Patient-Led Research Collaborative🚀

It’s been widely reported by people with #LongCovid & #MECFS that infections can have a significant impact on long-term symptoms

With your help, we can better understand this phenomenon 🧵

Sign up for our Apr. 29 webinar 'Symptom Management and Patient Empowerment Through the #LongCovid Wearable Study.' Scripps Research Sr. Program Dir. Julia MV will explain how you can join the study using your #SolveTogether account. Register: ow.ly/eevN50RbU7u

Well, those are the ones you can interview with. There are ones completely bedbound, in unbearable pain 24/7, cannot tolerate even a bit of light and sound, cannot eat or drink. Examples? My daughter, Erin Godwin ‘s daughter, so on… #LongCovid Kids #LongCovid

'A biased test kept thousands of Black people from getting a kidney transplant. It’s finally changing'

14,000 Black kidney transplant candidates have been moved up in priority on the transplant list after a biased race-correction factor was eliminated.

apnews.com/article/kidney…

People with 2 copies of APOE4 have ~10X risk of Alzheimer's. Here's the discovery of a protective variant and learning how fibronectin 1 plays a role
link.springer.com/article/10.100…

I'm excited to answer all your questions about the Long COVID Wearable Study at this webinar!

Register for the webinar here (updated link):
ow.ly/eevN50RbU7u

Learn more about and/or enroll in the study here (anyone with ME and/or POTS is welcome): longcovid.scripps.edu

New Severity Scale for ME/CFS

I wrote this new severity scale for ME/CFS about 2 years ago.  I really wanted to express how severe the illness can actually get which is not at all reflected in our current mild-moderate-severe-v.severe scale.  And I wanted to make it more…

Truly could not be more excited for this 😭

Thank you Bernie Sanders for your leadership, thank you Michael Peluso, MD for calling for this with me in our Nature comment, and thank you Long Covid Moonshot & entire #LongCovid community for getting us to this point!

sanders.senate.gov/press-releases…

I wonder how much of 'medium COVID' (what I call folks recovering between 1 & 6 months after infection) this lower rate of viral persistence in plasma explains.

It would be interesting to see whether this levels off or continues to ⬇️ over time.

Love the pre-pandemic controls!

Today The Sick Times: I wrote about a new project, by Ezra, making clinical trials more accessible to the #LongCovid community. Ezra also shared his original analysis of the clinical trial landscape with me -- check out the piece for interactive charts!
thesicktimes.org/2024/03/26/wan…

Over 200 participants have enrolled in the Long COVID Wearable Study!

But most participants already own wearables.

I would greatly appreciate if you could share the study with those who don't have the means to purchase one or aren't sure about the value:
longcovid.scripps.edu

Just happened upon the below from last #LongCovidAwarenessDay

Every word still applies this year.

Nature: ‘Projecting the long-term effects of the COVID-19 pandemic on U.S. population structure’

nature.com/articles/s4146…