Sonya (she/her)

Something I think about a lot: One of the reasons people used to think boys “outgrew” ADHD is because in adulthood men tend to offload their executive function (managing calendars, remembering birthdays, cleaning, grocery shopping) to wives and secretaries so it masked their symptoms.

Elon Musk now has access to your Social Security number. The world’s richest man has gained access to the confidential personal information of every taxpayer in the United States.

Can't stress enough how important it is to care for our nervous systems right now and in the days, months and years to come. All of that fear and anxiety will take a toll on us. Take time to breathe, feel it and let it move through you. Even if all you can do is 5-15mins a day, that can do wonders.

Truly dystopian activities

✅ 😞

This type of horrific treatment must stop. There is ample evidence of the harm this causes #pwME

PLEASE sign & share

Photo of a large bed covered with a denim patch quilt. There is a lot of variation in color as well as some squares with pockets and others with drawings and messages written in marker

I have #SDAM (difficult to recall personal past events) but I can often remember facts. I was 🤯 this wk when a loved one shared this 📸 of a denim quilt I made them 19 yrs ago - I had NO memory of it! How could I forget the fact that I created this personalized king sized quilt from salvaged denim?!

Anyone know the common source(s) for nicotinamide riboside?

I’ve found 3 products that don’t seem to have 🌽-derivative fillers but haven’t uncovered the source material

Considering trying it instead of D-ribose (typically recommended for #pwME ) since I can’t find a d-ribose not derived from 🌽

Our current town’s firefighters put 🎅🏻 on a 🚒 every Dec & drive thru town throwing popcorn balls to kids. We’ve been here 5yrs & *every* yr my cPTSD is triggered by SUPER loud🚨🚨🚨 that I associate w/catastrophe - even when I know they’re coming. At least it wasn’t yesterday, 12/14 anniv is hard enough

From what I’ve read in the past year, studies have not shown that Paxlovid treatment during acute COVID reduces the risk of Long COVID nor have they shown that it’s effective as a treatment for Long COVID.

Mitigation of risk - NOT prevention of infection. Very different outcomes

I don’t have capacity to read entire Lancet report, but suspect article linked here is poorly written as this snippet is repeated in Lancet report, “benefit of the vaccine in preventing long COVID outcomes is largely attributable to its capacity to mitigate the risk of SARS-CoV-2 infection”

Except Covid vaccines don’t prevent infection - they prevent severe illness from infection

I’ve been trying to get POTS treatment since its dramatic onset 1/9/23 after I had Covid 12/31/22. FINALLY got a med 11/8/24 after steady decline. I have hope now that I won’t be forever housebound/bedbound, but imagine if it was treated then, instead of SO many Dr visits, tests & dismissal 😞

I know it may seem
that the deadly outbreak
of a mystery disease in Congo
isn’t your problem,
after all,
you aren’t in Congo,
but by this point
in the current pandemic
you should understand
that what starts
as someone else’s problem
can very quickly become
your problem as well.

Going to #longcovid clinic is stressful. I wasn’t sure I’d have enough energy to get there tomorrow but new med dose kicked in today 😌 Still need to gather info & questions, but realized @ 5pm - it’s been so long since 🚙 was driven that 🪫 is ☠️ So… $65 in Uber 😞 + $50 copay + $$$ compounded 💊 #MECFS

Thanks, I’ll look these up another day. At capacity today

To be at risk you’d need to have the risk version on the variant for that gene. Sequencing.com Genome Explorer app

Fatigue, hyperadrenic POTS (positional high BP & HR), brain fog, memory issues, cognitive decline, tinnitus, palpitations, anxiety, muscle aches, joint pain, light & noise sensitivity, dry eyes, vertigo, periodic GI issues (POTS-related), night sweats, vertigo, increased optical migraines

I ❤️ Sockwell’s wool compression socks, but unfortunately they’re insufficient for my POTS. I need the pantyhose that go to waist. The medical grade ones cause PEM right now when I put them on tho so I’m using 15-20 hose & looking for abdominal binder - cardiologist said to wear one for 4hrs/day

I looked up ME/CFS also & only found 2 variants associated but neither apply to me

Finally opened my genome app & found a few risk variants I have that are associated w/LC
TLR2 rs3804099 risk is C
NLRP3 rs10754555 risk is C
HLA-G rs371194629 risk is I
Of 94 COVID-19 associated variants listed in app, most are related to severe COVID rather than LC tho (9 apply to me)

Amnesty International investigation concludes Israel is committing genocide against Palestinians in Gaza @amnestyuk.bsky.social
www.amnesty.org/en/documents...

✅

Sign the Petition ME Association Chair Neil Riley must step down

FYI there’s a new petition regarding this issue here: www.change.org/p/me-associa...

Sign the Petition ME Association Chair Neil Riley must step down

The @MEAssociation have not provided any adequate response to @alexisme.bsky.social’s open letter, therefore a collaborative of severe ME advocates have sent a follow up letter as well as creating a petition for Neil Riley to step down. Please sign and share:

www.change.org/p/me-associa...

Reminder to all able bodied people: you cannot always tell if someone is disabled or not…so if someone asks for accommodation, don’t assume you know better than they do…just give accommodation

Thank YOU for being such a great resource!

Long COVID-induced ME/CFS has disabled me to the point where I am one of the 25%. I am one of #MillionsMissing who desperately want to return their lives. We hold on to hope that someday things might get better. Donations today are doubled: www.meaction.net/donate

MEAction advocates for, & educates on behalf of, #pwME Too few 🧑‍⚕️ are knowledgeable abt ME or practicing compassionate care for #pwME. ME/CFS is a severe, disabling, & life-altering disease: 75% of ME patients are too ill to work, & 25% are unable to leave their 🏡 or, in some cases, their 🛏️