Bridget

Small fiber neuropathy (SFN) (aka small fiber polyneuropathy)

And Sjogrens (they listed sicca)

Other comorbids (not complete)
Orthostatic intolerance (OI), Postural orthostatic tachycardia syndrome (POTS), NMH or vasovagal Syncope

joint hypermobility, Ehlers Danlos Synsrome (EDS)

Thoracic Outlet Syndrome (TOS), Eagle syndrome, MALS, Nutcracker, May Thurner,
Chiari, CCI, AAI

Black cat lies on his back

Calico curled up asleep

Tortishell stares at the camera

My three cats

Patient voices were heard! The ADDRESS-LC trial on Bezisterim is now open to those who have been living with Long COVID for more than 2 years. We’re glad to see Biovie’s trial continues to reflect patient + scientific input!

Find a trial site near you: addresslongcovid.com/sites/

Not LC, but was thrilled to see a publication on #mecfs & voice/speech abnormalities
www.mdpi.com/2077-0383/14...

Help needed from LC pals!

The CURE ID survey, where you report meds and supps you’ve tried, is reopening!

If you’ve reported before, they’d love more info on what *didn’t* work for you, and what you’ve tried more recently.

And if you’re new to this, they want you to join in! Overview below:

Communication app in development An app is being developed to help people with ME and Long COVID (and similar) communicate their needs. The developers are requesting input from caregivers. Please fill out the short survey (google doc link below). Your responses will make this app as helpful as possible. ME Communication / Caregiver Survey Thanks for taking the time to help us today! We're creating a simple tool that will help people with ME and Long Covid communicate their needs when speaking is too hard. We'd love your input to make sure it truly helps. If you are a caregiver for a person with ME, this is the survey for you! https://docs.google.com/forms/d/e/1FAIpQLSfrTu82ubZYeDZZjSKHJUccv0QTq4rDp2OlQpGk8MDuHxThAg/viewform?pli=1 If able, the input of the person with ME you care for is of great value. The link so they can complete the survey People with ME SURVEY HERE.

ME communication/caregiver survey to help with the development of a communication app

Caregiver survey
docs.google.com/forms/d/e/1F...

ME patient survey
docs.google.com/forms/d/e/1F...

#LongCovid #MEcfs

I learned nothing about #MECFS in med school.

Had 1 lecture on #EDS that emphasized how rare it is.

Had 1 lecture mentioning #dysautonomia, nothing on #POTS

Zero on #MCAS

Repeated reminders that patients omit, fib, may not be reliable historians etc.

Granted this was 2 decades ago but 🤷🏻‍♀️

Without fail.

Me: I didn’t do anything extra. Why do I feel like I’m on the edge of the crash?

Husband: Did you check the weather?

I hate the cold and heat intolerance. I have a narrow 10 degree window in which my symptoms drop.

#MECFS

Black background with Blue forget-me-not flower white text reads: Severe M.E. Day August 8th Forget M.E. Not @MEActMaryland.bsky.social Logo bottom left corner

#severeME Day
Aug 8th is a day of Remembrance & a day of amplification

25% of those with #MyalgicEncephalomyelitis are Severe/Very Severe. Trapped in the Dark, the Void, the Wasteland

#SevereMEAwareness
#SevereMEAwarenessDay
#UnitedForME

The one who sees kids is also retiring soon...but he has trained a replacement. She sees adults too, but I'm not sure she's able to take any new patients (because obviously one doc for every person in the DMV is too many).

There's also a functional med who charges a ton in NoVa.

The patches definitely have a fragrance. It is not as bad as many, but still very much there.

I would think any type of "pain cream" could be compounded because they do specialty mixes of all kinds of pain creams (seriously, the combos!) So calling & asking for fragrance free seems reasonable.

"My Body Is No Longer My Own and I am Terrified." Chronic illness is an education in how much every single part of your body matters.

“If I'm asked to do something not on the schedule I think, "How much will this cost me? How much pain will this invite?" Socially speaking, this is nothing short of agony.": buff.ly/MnFdD1A

from elle
#SocialLife #lifestyle #ChronicPain #NEisvoid #ChronicFatigue

I use Belmar in Golden, CO. $67.50 is my $90 LDN price. They contact me about refills.

Hadn't heard about your National Compounder. But I'll add it to my list that I know & rec:
Belmar
Skips (FL)
CareFirst Compounding (NJ)
AgelessRX (has prescribers, if one can't get a local dr to write a script)

Photo of woman (Cynthia Johnson) wearing a jean jacket going across a crosswalk on a red mobility scooter. The back drop behind her is Abbey Road. #MEcfs since 2009 #StandByMEcfs

Scan code for "Financial Stability for Chronically-Ill Advocate" GoFundMe for Cynthia Johnson

Photo of woman with ME/CFS on red and black mobility scooter in front of sign: Third Annual Community Symposium on the Molecular Basis of ME/CFS, Saturday, September 7, 2019 (Photo of Cynthia Johnson taken by her son in 2019 at an Open Medicine Foundation event at Stanford. She has suffered from ME/CFS since 2009.)

Please give as you are able today!
Help is so very greatly needed and appreciated.
The sooner that I can raise the rest of the funds, the better for my complicated health issues. It will also allow me to devote more of my very limited energy towards ME/CFS advocacy.
#StandByMEcfs #pwMEcfs since 2009

Extremely fascinating. Looking forward to my brain deciding I can dig into this!!

Cool! 😎

I had meetings this morning with staff from #Oregon senators @wyden.senate.gov & @jeff-merkley.bsky.social as part of @solveme.bsky.social Advocacy Week 😁

Looking forward to some meetings on Thursday with staff from @salinas.house.gov office and other house reps!

#MEcfs #PwME #LongCovid

ME/CFS Research Roadmap: expert stakeholder roadmap towards biomarkers, diagnostics, & clinical trials. NIH approved, but no Congressional funding. Would be transformative.

Protect & expand the CDC #MECFS program. Provides education, validation, prevalence numbers, & clinical tools. Includes programs like MCAM that do multi-site, longitudinal research on ME & SBAS that train school nurses to identify kids at risk, preventing long-term disability with early intervention

Hopefully, other goals needed to continue to forward ME & LC research & education will be supported going forward as well! Such as:

I'm lucky in Maryland

Both Sen Alsobrooks & Sen Van Hollen supported restoring CDMRP funding. This is vital, unique, non-duplicative research that has #MyalgicEncephalomyelitis, #LongCovid, & #GulfWarIllness amongst its PRMRP topic areas

Photo of me, and white woman with brown hair in a blue shirt wearing hoop earrings with the Maryland flag design on them

Nothing says #Maryland like something with our flag on it. Made sure to wear my MD flag earrings today for meetings with staff at offices of @vanhollen.senate.gov & @alsobrooks.senate.gov for
@solveme.bsky.social Advocacy Day!

Having the faith to try new treatments is in & of itself a victory. (So is having the confidence to take a pause).

I often go back to repeating the mantra "this is not a linear illness" until I can see the change or remember them

Happy JUNETEENTH y'all!!! Support Black creators. Here's a great place to start:
go.bsky.app/VSHmC2p

For #Juneteenth we collected some resources:

JUNETEENTH: it's the celebration of the end of slavery in the United States, marking the day when the last enslaved African Americans were free.
nmaahc.si.edu/explore/mome...

YouTube video by The ME Action Network #MillionsMissing 2025 speech by Grace

We are honored to be able to share this speech by Grace- a college student living with ME and Long COVID.

We invited Grace to speak at #MillionsMissing as it is so important that young adults affected by ME are heard.

Speech: youtu.be/ZgURoWamFNI

Take action: www.meactions.org/millionsmiss...

Thank you, @kristinwrites.bsky.social!

We have hoodies and sweatshirts and joggers too! Plus hats, tees, tanks, mugs, totes!

Check it out! www.bonfire.com/store/meacti...

#pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #ChronicIllness #Spoonie

Ita dysautonomic dysfunction levels.

Alt ID1 : Graphic in blue/ yellow/ and white sharing info about the upcoming event: “Biomechanical Considerations in Pediatric ME/CFS” with Dr. Peter Rowe on June 9th at 1 pm ET. It includes a photo of Dr. Rowe #MEAction #TeachMETreatME @MeActnet

Premiering Now: Biomechanical Considerations in Pediatric ME/CFS the 4th Episode in the #MedEd Webinar Series by Dr. Peter Rowe youtube.com/@meactmaryland

Do you struggle to shampoo your hair? Grip strength? Come learn more! #MyalgicEncephalomyelitis ##thoracicoutletsyndrome #tos

#MEAction Maryland Our work as advocates for #mecfs involves a lot of myth busting about common misconceptions of complex chronic illness. One of the most dangerous myths we address is that children don’t become chronic...

Improving accessibility, the "Evidence-Based Pediatric ME/CFS webinar series by Dr. Peter Rowe" now have their full transcripts available via link - not just on www.youtube.com/@meactmaryland

#MyalgicEncephalomyelitis
#pediatrics
#MedEd
#MECFS