Notices by ahimsa (ahimsa_pdx@disabled.social)

@skinnylatte
Hey there, kelp! Water you doing? 😉

#Puns

My story, in brief:

I caught an unknown virus in Dec 1989. I thought I'd recovered but then started getting new symptoms in Jan 1990. In March I went on medical leave.

Over the next 5 years I went to dozens of doctors but got no diagnosis until 1995. I tried to keep working but finally got too sick to work in 2000.

Pushing myself all those years led to a permanent worsening of my condition.

Not a good idea! 😔

2/n

@mecfs @longcovid

#MEcfs #PwME #MillionsMissing #MEAwareness #WorldMEDay

💙 It's May 12th, International ME/CFS Awareness Day 💙

My ME/CFS onset was in Jan 1990

🚨 Many recent ME/CFS cases have been triggered by COVID 🚨

In this thread I plan to post about 3 main things:

1. My ME/CFS story (briefly)

2. Helpful resources for patients and clinicians

3. Advocacy options for patients & allies (friends/family) - mostly US based

1/n

@mecfs @longcovid

#MEcfs #LongCovid #PostCovid #Disability #DisabilitySOS #CovidIsNotOver #MillionsMissing #MEAwareness #WorldMEDay

If you learn nothing else from my thread today, please remember this:

Exercise is NOT recommended for people with ME/CFS!

Exercise is not good for anyone who has post-exertional malaise (PEM), sometimes called post-exertional symptom exacerbation (PESE), and that includes a significant portion of people with Long Covid.

This video has more info:

https://www.youtube.com/watch?v=wxSwYUennBA

3/n

@mecfs @longcovid

#MEcfs #PwME #PEM #PESE #LongCovid #MillionsMissing #MEAwareness #WorldMEDay

🚨 Call to action! 🚨

#MEAction has written a letter to NIH demanding full funding for the ME/CFS Research Roadmap

And they've asked folks to sign on to this letter:

https://airtable.com/appEwdLZCdtR0xwuv/pagMvv9RZYLxZiDFe/form

From the letter:

"NIH budget for ME/CFS is $13 million for fiscal year 2024/25– the lowest in comparison to its disease burden of any disease monitored by NIH"

Even if you don't sign please boost 🙏

Thank you! ❤️

@mecfs @longcovid

#MEcfs #PwME #LongCovid #NEISVoid #ChronicIllness #Disability

"Mohsen Mahdawi — the Columbia student arrested at his citizenship appointment — speaks"

https://www.opb.org/article/2025/04/29/detained-columbia-student-mohsen-mahdawi-speaks-from-prison/

"In the first media interview with any of the Trump administration’s student detainees – all at risk of deportation — Mahdawi spoke to Leila Fadel in the Northwest State Correctional Facility in St. Albans, Vt., where he’s awaiting a court hearing Wednesday …"

#USPol #Immigration #DueProcess #FreeSpeech #Mahdawi #Resist #Fascism

Ooh, this episode of Independent Lens (PBS) looks good!

"Free For All: The Public Library"

https://www.pbs.org/video/free-for-all-the-public-library-xby0gf/

"From the pioneering women behind the 'Free Library Movement' to today's librarians who service the public despite working in a contentious age of closures and book bans, meet those who created a civic institution where everything is free and the doors are open to all."

#Libraries #Books #BookBans #PBS #Documentary

And a thread that mentions libraries isn't complete if I don't add this video from the Hillsboro Public Library:

"Don't You (Forget About Things)"

https://www.youtube.com/watch?v=jqO5-T0WchA&list=PLcJy2k9jTPdIAw8e-g64RC5h53702G2F_

#Libraries #Hillsboro #Oregon #Humor

This blog post from Independent Lens talks about why we need libraries:

"More Than Books: 10 Different Ways Public Libraries Make Our Lives Better"

https://www.pbs.org/independentlens/blog/more-than-books-10-different-ways-public-libraries-make-our-lives-better/

🚨 On May 12, International ME Awareness Day, #MEAction will be sending out an SOS for ME/CFS and Long Covid 🚨

SOS = Save our support systems. Save our science. Save our society.

A protest will be held at the Capitol in Washington, DC, and folks can also join in from home

#MEAction encourages all folks with disabilities to join!

More details / toolkits here:

https://www.meactions.org/millionsmissing2025

Please boost! ❤️

@mecfs @longcovid
@disability

#MEcfs #MillionsMissing #LongCovid #MEAwareness #Disability

@DoomsdaysCW

In case it helps anyone out there, here's the official information on sanctuary laws in Oregon from the Oregon Dept. of Justice:

https://www.doj.state.or.us/oregon-department-of-justice/civil-rights/sanctuary-promise/

Attached image is a partial screenshot (reader view)

The website also includes info on hotlines for reporting violations of the law.

#USPol #Sanctuary #SanctuaryStates #Oregon #Resist

"Trans Woman Escapes America’s Hate and Finds Peace on the Ocean"

https://www.unclosetedmedia.com/p/trans-woman-escapes-americas-hate

"Shortly after President Trump’s reelection, Kelsey Granger fled Texas by boat and has been living on the Atlantic Ocean ever since."

#USPol #Trans #TransRights #LGBTQ #LGBTQIA

Encouraging quote from Jamie Seltzer of #MEAction -

“MECFS researchers and advocates have been managing to do the impossible with next to nothing, and we will continue to do so ...

So for all of those folks with long COVID out there who are looking at this and feeling in despair, we have been here before and we have persisted …

We are unlikely to snap our fingers and find a cure, but that was always true, and advocates are going to keep fighting.”

#LongCovid #MEcfs #HealthCare #Resist

I think I've already posted this but it's worth re-posting:

"Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... Again"

https://www.salon.com/2025/04/01/admins-on-chronic-disease-research-abandons-long-and-mecfs-patients-again/

"Budget cuts and the dismantling of federal agencies are making it harder for patients with long COVID and ME/CFS"

@mecfs @longcovid

#LongCovid #MEcfs #Research

I encourage patients and allies who are feeling discouraged to join the Millions Missing 2025 campaign:

https://www.meactions.org/millionsmissing2025

The SOS theme = "Save our support systems. Save our science. Save our society."

The main event is a protest on May 12 in Washington, DC. There'll be smaller events across the US. Or schedule a meeting with your local congress rep

Can't attend in person? Join in online on May 12

See the link for lots more ideas

#MEcfs #LongCovid #MillionsMissing #MEAction #Resist

"Print Media to Mass Protests: 'Please Turn to Page 18' "

https://newrepublic.com/article/193683/print-media-downplay-mass-protests

"Here’s how newspapers across America minimized one of the largest demonstrations since Trump’s return to power."

#USPol #HandsOff #Media #Protest #Resist

Sen. Cory Booker still speaking on the senate floor!

As I type this Booker is talking about the closing of social security offices. Reminder, cuts to SSA also hurt folks who rely on disability payments not just folks over 65.

Story from NPR:

https://www.npr.org/2025/04/01/nx-s1-5347318/cory-booker-senate-speech

Livestream on CSPAN:

https://www.c-span.org/event/us-senate/us-senate/432077

#USPol #CoryBooker #Senate #Democracy #Resist #SocialSecurity #Disability

Re-posting with content warning:

As always in #uspol, what’s controversial here is not that an American bomb leveled an entire apartment building in #Yemen killing 53 people (both Republicans and Democrats believe such operations are permissible), only that the plans to do so were discussed on an unsecured chat #signal #signalgate

source = https://spore.social/@abshlimon/114229476401590873

From Ben HsuBorger at #MEAction:

"Why I Joined a Stand Up for Science Rally"

https://www.meaction.net/2025/03/12/why-i-joined-a-stand-up-for-science-rally/

"I have lived as an ME/CFS 'spoonie' for the past 20 years after I got a virus and never recovered. I’ve spent much of the past 10 years of my career advocating for ME/CFS research at the NIH"

"I don’t want to see the same scientific harms that have happened in the ME community become even more widespread across all of science"

@mecfs

#MEcfs #StandUpForScience #Protest #Resist #USPol

More quotes:

"Check out other organizations that fight for Long COVID day in and day out including:

Black Long COVID Experience, COVID-19 Longhaulers Advocacy Project, Long COVID Families and Patient-led Research Collaborative, among others!

Share information, check out these groups, donate today!

Long COVID research care and treatments matter for everyone."

@longcovid

3/3

#LongCovid #MEcfs #Awareness #ChronicIllness #StopRestPace #LongCovidAwarenessDay