This is great. I was in the moderate to very severe A category for much of my illness

To those who tried Truvada, how long until the side effects went away? It’s been 2 weeks - the nausea has decreased a lot but still feel at a generally lower baseline, much more susceptible to PEM, all the immune symptoms very prevalent, worse POTS & light sensitivity. #longcovid

Today we need to stand (or sit or lay down in my case) in solidarity with Millie, who is in hospital with very severe M.E.. She is being kept against her will, her M.E. deteriorating every day. Hospitals aren't equipped to deal with severe M.E. #BringMillieHome #DontLetMEDie

Bernie Sanders (Bernie Sanders) has released a #LongCovid Moonshot Legislative Proposal calling for $10b in research funding!!

This is thanks to so much advocacy from patients & allies 💓 Immense gratitude to Lisa McCorkell Patient-Led Research Collaborative @lcmoonshot Michael Peluso, MD & the community!

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…

The first #MillionsMissing #TeachMETreatME event happens tomorrow! UNC Family Medicine UNC Family Medicine hosts an *internal* Grand Rounds first thing in the morning on Wednesday, April 12th.

More #MEAction Network #MillionsMissong24 events coming up in April & May

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…

Incredible stuff — so much gratitude to
Lisa McCorkell & Michael Peluso, MD for inspiring the community around this #LongCovidMoonshot last fall — and to Bernie Sanders for once again proving to have unparalleled moral clarity, courage & vision that leads this country forward.

Folks in #MECFS community are feeling left out of the #LongCovid Moon Shot legislative proposal after being neglected for 40+ years. You can provide feedback on the proposal by 4/23/24 by emailing [email protected]. More info: sanders.senate.gov/wp-content/upl…

I might be wrong but these Glu and Asp are released in post-acute injury conditions.
That points to an injury mechanism.

Anyone with ME needing an NG tube, so important to rule out MCAS, MALS, Nutcracker syndrome, CCI, and other conditions that can cause gastroparesis.

The BBB is disrupted in long Covid and explains a lot of what we see in clinic as well as the progression of other neurological symptoms. Working to repair and regenerate should be a major focus.

nature.com/articles/s4159…

With #MEcfs it's dangerous to go to the hospital. But Millie had no choice. She needed life saving help. But she is treated by doctors who have no clue about her illness + refuse to listen to experts, making her sicker in horrible ways 💔

#BringMillieHome #DontLetMEDie

It shouldn't be a postcode lottery to whether you receive appropriate treatment, as to whether a NG tube can be inserted, which is literally a matter or life and death. #BringMillieHome #DontLetMEDie

An important new study published in The Lancet Infectious Diseases found SARS-CoV-2 virus proteins persisting in blood in about 25% of people who had COVID up to 14 months prior. polybio.org/covid-19-virus… Comparison blood drawn pre-COVID showed only 2% assay positivity.

It has been proven that Graded Exercise Therapy is not a successful 'treatment'. It's been proven that M.E. is a neurological condition. So why is Millie being treated like her condition is psychiatric? GMC Royal College of Psychiatrists
Royal College of Physicians
#BringMillieHome #DonntLetMEDie

New study out from the amazing Michael Peluso, MD et al!

They looked at both:

a) whether viral antigen persists after COVID infection (it does, in 25% of people!!)

b) which tests were more likely to pick this up

1/ #LongCovid