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#pots

17 posts12 participants0 posts today
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I'll end by saying I did advocacy week for the first time this year. I learned so much & enjoyed meeting (via Zoom) other volunteers who attended Senate & House staff meetings.

The training sessions were helpful and were recorded in case you could not watch in real time.

My team leader was so well informed. It helps to have healthy volunteers (no brain fog) in addition to patient volunteers!

Kudos to Solve ME!

solvecfs.org/advocacy-week-202

@mecfs @longcovid

5/5

Solve ME/CFS Initiative · Advocacy Week 2025: Power, Progress, and Patient-Led Change - Solve ME/CFS InitiativeFrom June 23–27, Advocacy Week 2025, over 200 fierce, compassionate advocates came together from all across the country to make sure one thing was clear: ME/CFS, Long Covid, and related conditions will not be ignored.
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More quotes:

"We also hosted our annual EmPOWER M.E. virtual forum, designed to give patients practical tools and legal knowledge to navigate life with complex chronic illness.

This year’s main session focused on the life-saving practice of pacing — including physical, emotional, cognitive, practical, and sensory strategies …"

Recording of the June 27 EmPOWER M.E. forum:

youtube.com/watch?v=to9xPPuRM1

@mecfs @longcovid

4/n

Replied in thread

Policy asks:

- Restore funding for Congressionally Directed Medical Research Program (CDMRP) & protect ME/CFS as a topic area

- Protect & restore the CDC’s Chronic Fatigue Syndrome Program

- Fund the NIH’s ME/CFS Research Roadmap (in collaboration with #MEAction and #NotJustFatigue)

- Support 10-year follow-up to the 2015 IOM/NASEM report

- Ensure ME/CFS is included in NIH restructuring discussions

Details:

solvecfs.org/wp-content/upload

@mecfs @longcovid

3/n

Continued thread

Another quote:

"This year’s Advocacy Week was intentionally focused. We prioritized key bipartisan members of Congress involved in the federal budget process—at a time when essential ME/CFS and Long COVID programs and funding are on the chopping block. We trained new advocates, empowered seasoned leaders, and adjusted in real-time to fast-moving developments in D.C."

@mecfs @longcovid

2/n

Replied to Jeri Dansky

@jeridansky @ai6yr @sindarina @mattblaze @MsMerope
Land lines are already on life support. When my copper #POTS line went dead last year, I had to wait a week or so for a tech to be able to come out, scheduled on a very user-unfriendly support website. The tech mentioned in passing that there are only 2 or 3 techs covering the entire peninsula from SJ to SF, both COs and lines, because he had to wait for his counterpart to get to the CO to check the line from the other end.

AT&T just wants to focus on the higher margin and more monetizable business of selling expensive lifetime-limited electronics that push ads and tracking into our pockets.

Regarding my question about keeping my copper phone lines or not, I just saw this which I'd missed before; AT&T has announced it intends to get rid of its copper networks by 2029, assuming regulators allow that. California might be an exception.

pcmag.com/news/att-to-retire-t

In 2024, California said no to its request to get out of its Carrier of Last Resort obligations.
cpuc.ca.gov/news-and-updates/a.

But it's trying again:
ptreyeslight.com/news/landline

@ai6yr @sindarina @mattblaze
@MsMerope

Continued thread

Everyone became very worried about me being on my own. It was awful. #Pots is really dangerous and very serious.I spent years trying to get better until diagnosis, recovering black eyes, broken noses, thinking would i breathe this next time. People being ableist about young girls with Pots... will just kill young girls with Pots.

#Pots lot of talk on it not being real recently... I got a diagnosis in my teens after a full year of passing out that was really serious. I got RAD seizures with them back then, would stop me breathing, make me go blue and stiff. I passed out into traffic, in a road, down a flight of stairs, at a train station.

You'd have no idea if I'd start breathing before I was diagnosed a few times I nearly didn't. I broke alot of bones back then, spent alot of time in hospital.

It’s my birthday, but I now view time by different measures

I crashed so this is belated, but for my birthday/Stonewall anniversary ask, I received over 40 pro-mask messages of people wearing N95 or similar respirators! I think there are even more, I lost count a few times. Thank you SO much to everyone who participated and helped take care of themselves and their communities.

https://www.illmarks.com/2025-6-28-its-my-birthday-but-i-now-view-time-by-different-measures/

Ich habe jetzt eine große barrierearme Dusche mit Haltestangen und Sitz. Und es ist für mich noch ein bisschen unglaublich, aber ich dusche jetzt ohne, dass ich mich danach vor Erschöpfung und Symptomen zwei Stunden ins Bett legen muss.