Caroline Elizabeth Christian

Scleroderma, SLE, MCTD, dermatomyositis, among other CTDs, also feature abnormal capillaroscopies - has the MIT team discussed the intersection of these diseases and LC?

What a beautifully written piece. Thank you for sharing it here and on this day.

New recipe goes out in the SPRING newsletter on Thursday!

Looking to connect with people who have median Arcuate Ligament syndrome MALS who have had surgery. What's your pain benefit? Any relief from other symptoms like nausea? Any effects on your comorbids?

Since the election, I have experienced profound dread, fear, sadness, anger, etc. Yesterday a new and more potent emotional valence set in due to the actions of 10 democratic senators:

Hopelessness and despair.

This is what happens when you feel no one w/ leverage is fighting for you.

I just got through and was able to leave a message. I will fax as well.

Elon Is Coming for Your Social Security Plus: Don’t call it a “State of the Union” speech.

Former SSA commissioner Martin O'Malley: “We have a 50-year low in staffing while the baby boomer generation is swelling their ranks. That’s the underlying reality...these guys appear hell-bent on breaking it."

The latest Press Pass from @cheetah.bsky.social: www.thebulwark.com/p/elon-is-co...

It was 10 years ago today at 5:20am that my life was uprooted. Only 11 minutes into my typical morning run, I collapsed. During the following days and weeks that I tried to keep going, I got sicker. Today, I am still sick. Today is my 10th #MECFS Ill-aversary. 10 years > 20% of my life. #neisvoid

So sorry, friend. Crazy how so many of us can precisely mark the border between health and illness.

Commencing the Reduction of the Federal Bureaucracy By the authority vested in me as President by the Constitution and the laws of the United States of America, it is hereby ordered:     Section 1.

Aaand there it is:

2/19 - Executive Order from White House: 'Commencing The Reduction Of The Federal Bureaucracy’

"(iv) the Secretary of Health and Human Services shall terminate the Secretary’s Advisory Committee on #LongCOVID”

HT @bhanlon15.bsky.social

www.whitehouse.gov/presidential...

Sign up for my free newsletter if you're interested in this (dead easy) Cauliflower Soup recipe!! It goes out on February 15th. 💗

rachelriggs.substack.com

#paleo #dairyfree #healthyfood #eatyourveggies #mecfs #longcovid

Watching the RFK hearing fills me with more despair than I thought possible.

He's a lunatic.

Republicans are craven.

Democrats are useless.

And all of these people know that this is a farce, but they're playing their parts instead of living in reality.

“Constitutional crisis” is too mild a phrase for what’s happening here. I just don’t know what else to call it.

My NIH study section that was to meet tomorrow was one of those canceled. This represents many months of work by the applicants and by the NIH staff and reviewers. Devastating is the correct word.

Ooh can’t wait to hear more! 🙂

Research study opportunity!

The Mestinon/LDN LIFT study is seeking eligible participants within 150 miles of Brigham and Women's Hospital at Harvard Medical School. See details below.

#pwME #MyalgicEncephalomyelitis #MECFS

www.omf.ngo/studyme

I fit that bill and am still in the “dipping a toe in” phase.

Build it and they will come! I find engagement is down on all platforms.

I'm on the late shift covering the impact of these Los Angeles fires, and looking to speak to people who have evacuated so far, and whose homes and businesses have been affected. If that's you or someone you know, send them my way: Lois.beckett@theguardian.com.

If you're in an evacuation zone in SoCal, please check in with any disabled/aging neighbors you have to see if they need help evacuating.

Thanks!!

🙏

Thank you! I wish we had more evidence to support this using this drug class to treat LC and ME. Patience is not my virtue! Thanks so much!!

NIH-funded trial to determine if immunomodulation can improve brain and cardiovascular dysfunction in Long COVID Vanderbilt University Medical Center is working with scientists around the U.S. to launch the first Phase III, multicenter, placebo-controlled trial to determine the effect of immunomodulation on Long...

Has anyone seen any updates on the REVERSE LC trial evaluating Baricitinib in pwLC? Thanks!

news.vumc.org/2024/02/22/n...

Probably against all better judgement, a journal has invited me to write a guest editorial on the topic of Long Covid.

What should I cover?

It's been great to see the influx of people from the ME/CFS and long Covid community in the last week.

Here's a starter pack by @chromatowski.bsky.social that's worth checking out:
bsky.app/starter-pack...

It lists interesting people to follow and also has a feed

#MEcfs #CFS #PwME #LongCovid

1/

Hi friend!

Hello! Hoping to connect with friends in the #MECFS and #Longcovid chronic illness communities!

Anyone benefitting from rapamycin?

Workwell Teams up with STAT Health | Workwell Foundation Workwell Foundation recently teamed up with Daniel Lee, the co-founder and CEO of STAT Health, to test an exciting new in-ear wearable device that measures blood flow to the head.

Workwell teams up with STAT Health

Our research aims to understand whether cerebral blood flow is reduced during post-exertional malaise (PEM) and if this metric helps explain the worsened orthostatic symptoms many report while in PEM. 

Check out our new blog on this exciting collaboration!