Malka_G

Trying to rebuild my #NEISvoid and #ChronicIllness communities here! This starter pack looks helpful for anyone else trying to do the same: go.bsky.app/GcGzAae

2/ We grew up watching Back to the Future thinking 2025 would have flying cars (hell that was supposed to happen 10 years ago). Instead, we got chronic illness, corrupted science, & vibes-based infection control. And that gave us fascism. Just like the 1918 pandemic & the events that followed.

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/

again, this is why wearing a mask is one of the most compelling acts of daily resistance you can engage in. if you changed almost nothing else but start wearing a mask in public indoor spaces, you’re arguably doing more material mitigation to keep you & your community well than this administration.

Many data sets held by NOAA are being "retired" in may, including datasets relevant to ocean sciences and climate. If you have need for these data, or are an archivist, it would be good to download this now. PLEASE SHARE WIDELY. www.nesdis.noaa.gov/about/docume...

🏥HHS ELIMINATIONS💀 We have created a list of all agency and program eliminations proposed in the HHS 2026 Budget. Feds: Please let us know if you have any clarity to share. The cuts are massive. Reach out if you would like a PDF or xlsx @alt-hhs.altgov.info @altfda.altgov.info

Disabled/neurodivergent people are worthy of living regardless of whether they have a job or pay taxes or not.

🚨 Still not getting the attention it deserves: Critical systems behind Medicare, Medicaid, and more—programs that serve over 150 million Americans—are at risk of collapse. Wired article explains how mass layoffs in HHS IT + cybersecurity leave our health infrastructure dangerously exposed. 🧵

Disability is one of the few minority groups you can join at any time. People believe they will be the exception & have trouble accepting they’re likely to become disabled at some point in their lives. Work on internalized ableism. Engage in disability justice. It will benefit you in the long run

This is fine. Everything is super, duper fine. www.cbsnews.com/news/fda-foo...

Some bad news for people living with #MECFS. Under the 2026 "passback", the "reorganization" of HHS and CDC would cut all ME/CFS funding from CDC. I think this is a 'scoop', since I'm unaware of anyone having reported on it, yet. Let's talk about what a passback is, and what it means for us. 🧵🧪

US FDA suspends food safety quality checks after staff cuts reut.rs/42C4h1Z

PLRC is 5 years old today!!!! If you are able, please consider donating to help sustain #LongCOVID research when it’s needed most. bit.ly/plrc-donate 1/

📢 The Internet Archive needs your help. At a time when information is being rewritten or erased online, a $700 million lawsuit from major record labels threatens to destroy the Wayback Machine. Tell the labels to drop the 78s lawsuit. 👉 Sign our open letter: www.change.org/p/defend-the... 🧵⬇️

YES! This is a budget *proposal* at the current stage. We can NOT let them do this. This is the time to fight. This is the time to tell everyone you know what's happening and why it matters, to call your senators and reps, to write an op ed, to make your voice heard

I have at least one interaction daily which reminds me of how oblivious most average Americans are to the aggressive destruction of public health & the unravelling of protections for their health happening in real time. That really scares me because it will be too late when realization sets in.

My friends made these graphic to push for a boost for my fundraisers — both need urgent support so I’m not homeless and can survive Please boost and engage with this post even if you can’t donate! 💜 Rent fund: www.paypal.com/paypalme/Sav... 💛 Medical GFM: www.gofundme.com/f/save-nevra 1/3

We’re not living through a “wow this is a bad administration” moment. It’s a “there may not be another administration” moment. It’s not just politics.

All 27 scientists at this CDC lab were told their duties were "unnecessary," and now viral outbreak investigations have been halted.

Reminder that kosher for #Passover does NOT mean #GlutenFree! Matzah, matzah meal and matzah farfel by definition have gluten (unless it is oat matzah, which isn't used in packaged foods). There are lots of GF products for Passover, but you still need to read labels. #Pesach #FoodAllergies

The absolute panic when one of the few packaged foods you tolerate is suddenly discontinued... #MCAS #NEISvoid

Disability is not a moral failing. Health is never a guarantee. Instead of judging those who are sick, help them. Fight for better social supports. Wear a mask. Push back on ableism. Give to mutual aid. Give help freely & without strings and don’t make people beg.

Also yes project 2025 was always the plan.

All Los Angeles Public Library locations are providing free N95 masks. Libraries are essential!

It’s an inconvenient truth: if we claim to care about EQUITY, we must protect people from COVID at work, schools, health settings, etc…the most disadvantaged are among those disproportionally impacted by acute & long-COVID. We need courage to speak up, clean the air, mask up in the name of EQUITY.

For people with complex chronic illnesses - the ER is often one of the worst places we can be. They’re busy, full of sick people, staff are overworked and often burned out and they can be a sensory nightmare. Ever spent 2 days on an ER gurney? You will know what I mean. /2

Scary stuff. "Should this project succeed, our ability to make collective sense of the world will be further fractured. We will no longer inhabit one of several competing filter bubbles; each of us will be in our own private filter bubble."

There’s so many benefits to wearing a mask: You protect yourself Your protect those around you You send a message that you don’t believe people are expendable You have peace of mind that even if you get sick - you won’t have infected or harmed anyone else You make them harder to ban!

WHO Director, Dec 10 2024: “We cannot talk about COVID in the past tense. It’s still with us, it still causes acute disease and “long COVID”, and it still kills.” www.who.int/director-gen...

How do you get someone to take it? But getting them to TRUST you, which is not about precision or process, it’s about EMOTION Understanding audience, purpose, context, emotional strategy, those are all communication things It’s a completely different skillset than science

I’m going to tag @regenceutah.bsky.social every day until they approve my friend’s chemotherapy This is day 6 She is scheduled to start chemo this Friday The numbers listed on their website don’t work Instead we are emailing their CEO and also the governor and senators!

We're hiring 2 new roles! These are 6-month contracts with possible extension, and can be between 25-40 hrs/week. Deadline Dec 31! 1) Partnerships & Advocacy Coordinator 2) Fundraising & Operations Manager Please share widely! patientresearchcovid19.com/job-opportun... #LongCovid #neisvoid #pwme

#pwLC #pwME #NEISVoid Propublica request for feedback on barriers to care in US

If you’re newly disabled - you may find one of the toughest battles you’ll have is with yourself. Unlearning internalized ableism, convincing yourself it’s “ok” to rest, ask for help & rely on others… these are not easy things to do. But they are critically important for survival.

(US) Urgent Call to Action: Medicare Telehealth Benefit From Massachusetts ME/CFS & FM Assoc massmecfs.org/newsletters/... Links in image www.congress.gov/bill/118th-c... actionnetwork.org/letters/pres... actionnetwork.org/users/sign_in #chronicillness #Spoonies #ChronicallyIll #LongCovid #MEcfs

Docs, Just because you’ve found a possible cause for your patient’s symptoms, doesn’t mean you’ve found the most likely cause. If the case isn’t cut-and-dry, search for possible cause 2 and 3, *then* decide which is most likely. #MedEd #NEISvoid

friendly reminder that you didn't waste your year. any moments of happiness or comfort, any small accomplishments, they all matter. this has been a really hard year, and simply surviving is something to be proud of. #2024 #2025 #spoonie #disabled #mentalillness #chronicillness #bpdfam #bpd #neisvoid

If you have #POTS and #MECFS and are affected by the #IVfluids shortage, this thread is for you. Did you know a proper Oral Rehydration Solution is proven to be as hydrating as IV fluids? And even more beneficial for than IV fluids in some ways? Not regular electrolyte drinks. Let’s talk. #NEISvoid

It's a lonely feeling when you feel like you've lost years to being in survival mode. Especially when it used to be a communal thing, before everyone decided to ignore facts and embrace constant sickness. Now you watch the normalcy farce on social media and feel empty.

Unless Congress acts in the next three weeks, Medicare will stop covering telehealth. For people too sick to leave home for months, including millions who have been disabled by Covid, this will mean losing all access to healthcare. Please sign this petition urging your representatives to act

One of the single best things you can do for us on #InternationalDayofPeoplewithDisabilities is to wear a mask. Make public spaces safe for us again. Join us in demanding masks in healthcare. Refuse to leave us by the wayside.

Telehealth was something disabled people had spent years begging for. It’s a game changer when you have an energy limiting chronic illness. It’s hard to imagine any legitimate reason to remove it - it will cause harm. Let patients access care in the way that is safest for them.

Unless Congress acts in the next three weeks, Medicare will stop covering telehealth. For patients like me, too sick to leave home for months at a time, that would mean losing all access to healthcare. Please sign this petition prodding your representatives to act: actionnetwork.org/letters/pres...