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Malka_G

@malkag.bsky.social
533 followers 2.2K following 220 posts

Writer/editor. Chronically ill. Slowly working on setting up this account. Hoping to reconnect with #NEISvoid, #DisabilityTwitter, #CovidIsntOver, #StillMasking, etc.

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Reposted by Malka_G
Hector Diaz @iamhectordiaz.com · 08/05/2025
A Chicago Pope implies the existence of an MLA Pope and APA Pope
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Sean Mullen, Ph.D. @drseanmullen.bsky.social · 23/04/2025
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.
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Tom Kindlon @tomkindlon.bsky.social · 21/10/2024
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/
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babs ✨ @itsbabs.bsky.social · 22/04/2025
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.
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Curtis Suttle @virosphere.bsky.social · 18/04/2025
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...
nesdis.noaa.gov
Notice of Changes
Notices of changes are formal public announcements of planned services changes to applications and other products.
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Alt CDC (they/them) @altcdc.altgov.info · 18/04/2025
🏥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
An image of all agency and program eliminations proposed for HHS. Reach out to altCDC for an accessible version or filterable PDF. The alt-text box does not fit all the text contained.
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Briana Mills, LMFT ♿️🏳️‍🌈 @brianamillslmft.bsky.social · 18/04/2025
Disabled/neurodivergent people are worthy of living regardless of whether they have a job or pay taxes or not.
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Alt CDC (they/them) @altcdc.altgov.info · 18/04/2025
🚨 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. 🧵
wired.com
HHS Systems Are in Danger of Collapsing, Workers Say
The purging of IT and cybersecurity staff at the Department of Health and Human Services could threaten the systems used by the agency’s staff and the safety of critical health data.
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Kelly @broadwaybabyto.bsky.social · 18/04/2025
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
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C.H. Romatowski @chromatowski.bsky.social · 18/04/2025
For #NEISvoid folks stocking up on supplements—my LC friend Anna is an NP, so has provider discounts from Pure Encapsulations (35%), Thorne (30%), and Fullscript (25%, has many brands). I just checked and she said I could share her Linktree w/those discounts: linktr.ee/annabell_np
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Dallas Holladay, DO (she/her) @dholladay.bsky.social · 18/04/2025
This is fine. Everything is super, duper fine. www.cbsnews.com/news/fda-foo...
cbsnews.com
FDA making plans to end its routine food safety inspections, sources say
Food safety inspections would be left to state and local authorities under the plan being developed by the FDA.
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 17/04/2025
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. 🧵🧪
National Center for Emerging and Zoonotic Infectious Diseases
The Budget discontinues funding for the Lyme Disease,. Prion Disease, Chronic Fatigue Syndrome and the Harmful Algal Bloom programs to prioritize funding for core infectious disease and surveiIlance activities. The Budget also includes $25 minion for the wastewater surveillance program within the Emerging Infectious Diseases PPA."
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Reuters @reuters.com · 17/04/2025
US FDA suspends food safety quality checks after staff cuts reut.rs/42C4h1Z
US FDA suspends food safety quality checks after staff cuts
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Patient-Led Research Collaborative @patientled.bsky.social · 17/04/2025
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/
banner with pastel colors that says "Patient-Led Research Collaborative 5th anniversary - you can sustain long covid patient-led work when it's needed most!" with a link to bit.ly/plrc-donate
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Internet Archive @archive.org · 17/04/2025
📢 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... 🧵⬇️
Defend the Internet Archive.
Protect the Wayback Machine.
Tell the music labels: Drop the 78s lawsuit.
Sign our open letter on change.org
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Rachael Sirianni, PhD @docsirianni.bsky.social · 17/04/2025
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
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BK. Titanji @boghuma.bsky.social · 16/04/2025
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.
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Joe Katz @joekatz45.bsky.social · 17/04/2025
"The Trump administration is seeking to deeply slash budgets for federal health programs, a roughly one-third cut in discretionary spending by the Department of Health and Human Services, according to a preliminary budget document obtained by The Washington Post." This is... a lot. Gift link.
wapo.st
Internal budget document reveals extent of Trump’s proposed health cuts
HHS would be asked to absorb a $40 billion cut, about one-third of its discretionary budget.
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Liz Nevra A. @nlizaki.bsky.social · 17/04/2025
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
A pink, purple a yellow graphic depicting flowers and hands reaching out to each other reads:

Support Nevra
Nevra recently underwent a diagnostic surgery for her endometriosis which has put extra strain on her body and has worsened her POTS and CCI symptoms.
She urgently needs a fundraising push to be able to afford rent, carers, medical care and to pay back her surgery loans.
Link for rent $1434 needed in 13 days
PayPal.com/paypal/me/saveliznevra
Link for all other costs goal: £1500
GoFundMe.com/f/save-nevra
+Links in @SaveLizNevraOfficial's bio
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Joanne Freeman @jbf1755.bsky.social · 16/04/2025
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.
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NPR @npr.org · 16/04/2025
All 27 scientists at this CDC lab were told their duties were "unnecessary," and now viral outbreak investigations have been halted.
npr.org
In the middle of a hepatitis outbreak, U.S. shutters the one CDC lab that could help
All 27 scientists at this CDC lab were told their duties were "unnecessary," and now viral outbreak investigations have been halted
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Malka_G @malkag.bsky.social · 10/04/2025
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
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Malka_G @malkag.bsky.social · 07/04/2025
The absolute panic when one of the few packaged foods you tolerate is suddenly discontinued... #MCAS #NEISvoid
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Kelly @broadwaybabyto.bsky.social · 15/02/2025
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.
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Molly Jong-Fast @mollyjongfast.bsky.social · 24/01/2025
Also yes project 2025 was always the plan.
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Dr. Lucky Tran @luckytran.com · 14/01/2025
All Los Angeles Public Library locations are providing free N95 masks. Libraries are essential!
N95 Masks are Available at all Los Angeles Public Library Locations
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Dr Val Finlayson @justsomeisotope.bsky.social · 12/01/2025
FYI for anyone else in Montgomery and Prince George's counties: WSSC Water urges limited water use due to increase in breaks and leaks | wusa9.com search.app/pF7btWW7yJ32...
wusa9.com
Washington, DC's Leading Local News: Weather, Traffic, Sports and more | Washington, DC | wusa9.com
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Dr. Jen Irwin @drjenirwin.bsky.social · 12/12/2024
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.
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Kelly @broadwaybabyto.bsky.social · 13/12/2024
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
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Malka_G @malkag.bsky.social · 12/12/2024
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."
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Kelly @broadwaybabyto.bsky.social · 11/12/2024
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!
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Dr. Jen Irwin @drjenirwin.bsky.social · 11/12/2024
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...
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🌈Dr. Frizzle @swilua.bsky.social · 10/12/2024
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
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🌈Dr. Frizzle @swilua.bsky.social · 11/12/2024
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!
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Patient-Led Research Collaborative @patientled.bsky.social · 11/12/2024
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
patientresearchcovid19.com
Job Opportunities – Patient Led Research Collaborative
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PhillyPhile215 @phillyphile215.bsky.social · 09/12/2024
#pwLC #pwME #NEISVoid Propublica request for feedback on barriers to care in US
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Kelly @broadwaybabyto.bsky.social · 09/12/2024
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.
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Tom Kindlon @tomkindlon.bsky.social · 09/12/2024
(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
Urgent Call to Action:
Medicare Telehealth Benefit
Urgent call for support for H.R. 7623 - Telehealth Modernization Act
The expansion of coverage for telehealth visits enacted in 2020 during the pandemic, and renewed for 2 yrs in 2022, must be renewed by the end of this year, or the benefit will be lost for many Medicare recipients. This could have serious consequences for many in our community who have come to rely on telehealth visits. Some Medicare Advantage plans may retain full coverage but this could change if they follow Medicare guidelines and are notified by Medicare that such visits are no longer covered.

H.R. 7623, with strong bi-partisan support, was reported out of the House Health subcommittee to the full Energy and Commerce Committee, but has not been taken up there. If no action is taken, expanded telehealth benefits will expire on December 31.

Homebound Hub has sponsored this easy way to send a personalized letter to your 3 elected representatives. (Note: if you are not already registered with Action Network you will need to sign up first.)
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Patients with Power @ptswithpower.com · 05/12/2024
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
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Mentally Millennial🦋💅🏻 @millennialmh.bsky.social · 05/12/2024
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
recoversuggestions:
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.
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RaiinbowEyes @raiinboweyes.bsky.social · 04/12/2024
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
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Brianna @goodchat.bsky.social · 04/12/2024
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.
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Taylor Lorenz @taylorlorenz.bsky.social · 04/12/2024
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
actionnetwork.org
Preserving Telehealth
Preserving Telehealth Many U.S. telehealth benefits are set to expire shortly at the end of this year (December 31, 2024). With this email campaign, you can simply fill out your information and it wi...
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Kelly @broadwaybabyto.bsky.social · 04/12/2024
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.
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Kelly @broadwaybabyto.bsky.social · 04/12/2024
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.
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Julie Rehmeyer @julierehmeyer.bsky.social · 04/12/2024
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...
actionnetwork.org
Preserving Telehealth
Preserving Telehealth Many U.S. telehealth benefits are set to expire shortly at the end of this year (December 31, 2024). With this email campaign, you can simply fill out your information and it wi...
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