@encephalogirl.bsky.social
Former environmental scientist disabled by myalgic encephalomyelitis & primary immunodeficiency. Blog for better understanding & advocacy.
https://encephalogirl.substack.com/
https://encephalogirl.substack.com/
ME/CFS is a disease that should be treated by any neurologist. Our lack of access to quality healthcare and specialists is more consequential than anything else associated with this disease right now.
encephalogirl.substack.com/p/brains-neu...
encephalogirl.substack.com/p/brains-neu...
Brains! Neuroinflammation in ME/CFS
ME/CFS classified as neurological disease by World Health Organization (WHO). Here's why.
encephalogirl.substack.com
February 4, 2025 at 5:55 PM
ME/CFS is a disease that should be treated by any neurologist. Our lack of access to quality healthcare and specialists is more consequential than anything else associated with this disease right now.
encephalogirl.substack.com/p/brains-neu...
encephalogirl.substack.com/p/brains-neu...
Reposted
ICYMI: Medicare plans to stop covering telehealth visits starting next month.
Telehealth is oftentimes the only way chronically ill, disabled, and elderly folks can access care.
Please sign below to tell Medicare to keep covering telehealth services.
#chronicillness #mecfs #neisvoid
Telehealth is oftentimes the only way chronically ill, disabled, and elderly folks can access care.
Please sign below to tell Medicare to keep covering telehealth services.
#chronicillness #mecfs #neisvoid
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...
actionnetwork.org
December 8, 2024 at 4:33 AM
ICYMI: Medicare plans to stop covering telehealth visits starting next month.
Telehealth is oftentimes the only way chronically ill, disabled, and elderly folks can access care.
Please sign below to tell Medicare to keep covering telehealth services.
#chronicillness #mecfs #neisvoid
Telehealth is oftentimes the only way chronically ill, disabled, and elderly folks can access care.
Please sign below to tell Medicare to keep covering telehealth services.
#chronicillness #mecfs #neisvoid
Getting a myalgic encephalomyelitis (ME/CFS) diagnosis is an up hill battle. This post provides some resources that might be helpful during the process. Plus, a simple call to action for our allies.
#MECFS #pwME
encephalogirl.substack.com/p/is-there-a...
#MECFS #pwME
encephalogirl.substack.com/p/is-there-a...
Is There a Doctor in the House?!?
The curious case of the missing doctor. A call to action & resources to self-advocate.
encephalogirl.substack.com
December 7, 2024 at 1:49 PM
Getting a myalgic encephalomyelitis (ME/CFS) diagnosis is an up hill battle. This post provides some resources that might be helpful during the process. Plus, a simple call to action for our allies.
#MECFS #pwME
encephalogirl.substack.com/p/is-there-a...
#MECFS #pwME
encephalogirl.substack.com/p/is-there-a...
Reposted
It's easy to fire up a righteous take about a health insurance CEO.
It's apparently harder to actually care about health by:
* masking
* cleaning your air
* improving ventilation
* vaccinating
* staying home when you're not well
It's apparently harder to actually care about health by:
* masking
* cleaning your air
* improving ventilation
* vaccinating
* staying home when you're not well
December 6, 2024 at 3:23 PM
It's easy to fire up a righteous take about a health insurance CEO.
It's apparently harder to actually care about health by:
* masking
* cleaning your air
* improving ventilation
* vaccinating
* staying home when you're not well
It's apparently harder to actually care about health by:
* masking
* cleaning your air
* improving ventilation
* vaccinating
* staying home when you're not well
If by “all in your head” they mean neuroinflammation, then yes.
Myalgic encephalomyelitis is a neurological disease per the WHO.
Neuroinflammation and reduced blood flow to the brain are major disease processes in ME.
encephalogirl.substack.com/p/brains-neu...
Myalgic encephalomyelitis is a neurological disease per the WHO.
Neuroinflammation and reduced blood flow to the brain are major disease processes in ME.
encephalogirl.substack.com/p/brains-neu...
Brains! Neuroinflammation in ME/CFS
ME/CFS classified as neurological disease by World Health Organization (WHO). Here's why.
encephalogirl.substack.com
December 6, 2024 at 12:38 PM
If by “all in your head” they mean neuroinflammation, then yes.
Myalgic encephalomyelitis is a neurological disease per the WHO.
Neuroinflammation and reduced blood flow to the brain are major disease processes in ME.
encephalogirl.substack.com/p/brains-neu...
Myalgic encephalomyelitis is a neurological disease per the WHO.
Neuroinflammation and reduced blood flow to the brain are major disease processes in ME.
encephalogirl.substack.com/p/brains-neu...
Reposted
Strong new evidence for T cell exhaustion in myalgic encephalomyelitis (ME/CFS) reflecting chronic viral infection, relevant to #LongCovid, and possible path to treatment candidates
www.pnas.org/doi/epub/10.... @pnas.org
www.pnas.org/doi/epub/10.... @pnas.org
December 2, 2024 at 8:46 PM
Strong new evidence for T cell exhaustion in myalgic encephalomyelitis (ME/CFS) reflecting chronic viral infection, relevant to #LongCovid, and possible path to treatment candidates
www.pnas.org/doi/epub/10.... @pnas.org
www.pnas.org/doi/epub/10.... @pnas.org
Some suggestions and tips for getting approved for disability with myalgic encephalomyelitis.
encephalogirl.substack.com/p/applying-f...
encephalogirl.substack.com/p/applying-f...
Applying for Disability
Resources & tips to help navigate a tough time (US readers)
encephalogirl.substack.com
November 27, 2024 at 1:16 PM
Some suggestions and tips for getting approved for disability with myalgic encephalomyelitis.
encephalogirl.substack.com/p/applying-f...
encephalogirl.substack.com/p/applying-f...
In non ME related life— look at these wee little mushrooms starting to pop in the shroom tent! Itty-bitty baby golden oyster mushrooms. 🍄🟫
November 27, 2024 at 1:01 PM
In non ME related life— look at these wee little mushrooms starting to pop in the shroom tent! Itty-bitty baby golden oyster mushrooms. 🍄🟫
Reposted
Most Medicare coverage for telehealth is set to end soon unless Congress acts. I reported on how this is a bad situation for the millions of people who rely on telehealth to more easily get medical care for @motherjones.com. www.motherjones.com/politics/202...
Congress has one month to save a key Medicare benefit
Millions of Medicare patients use telehealth—but their coverage is ending abruptly.
www.motherjones.com
November 25, 2024 at 10:19 PM
Most Medicare coverage for telehealth is set to end soon unless Congress acts. I reported on how this is a bad situation for the millions of people who rely on telehealth to more easily get medical care for @motherjones.com. www.motherjones.com/politics/202...
Reposted
In case you’re wondering whether you have ME, or whether your long COVID has progressed to become ME, here is a fantastic short explanation from the Bateman Horne Center. #mecfs #longcovid #myalgicencephalomyelitis
How to diagnose ME
youtu.be/8LXIXx7woCo
How to diagnose ME
youtu.be/8LXIXx7woCo
The Basics: Diagnosing ME/CFS
YouTube video by Bateman Horne Center
youtu.be
November 23, 2024 at 9:00 PM
In case you’re wondering whether you have ME, or whether your long COVID has progressed to become ME, here is a fantastic short explanation from the Bateman Horne Center. #mecfs #longcovid #myalgicencephalomyelitis
How to diagnose ME
youtu.be/8LXIXx7woCo
How to diagnose ME
youtu.be/8LXIXx7woCo
Reposted
"House Republicans have revived HR 9495, which would give Trump power to shut down nonprofits he doesn't like under the guise of fighting “terrorism.”
52 House Dems shamefully joined the GOP in voting for it last week.
Every Dem should vote against this authoritarian power-grab."
52 House Dems shamefully joined the GOP in voting for it last week.
Every Dem should vote against this authoritarian power-grab."
November 20, 2024 at 12:18 AM
"House Republicans have revived HR 9495, which would give Trump power to shut down nonprofits he doesn't like under the guise of fighting “terrorism.”
52 House Dems shamefully joined the GOP in voting for it last week.
Every Dem should vote against this authoritarian power-grab."
52 House Dems shamefully joined the GOP in voting for it last week.
Every Dem should vote against this authoritarian power-grab."
Reposted
Research shows that disabled people need at least 28% more income, to achieve a standard of living similar to that of non-disabled people.
search.app/BFdu1LBFS4RH...
search.app/BFdu1LBFS4RH...
A cutting board costs me $75 – it might cost you $10. What to know about the ‘disability tax’ | Well actually | The Guardian
Research shows disabled people need at least 28% more income than non-disabled people for a similar living standard
search.app
November 19, 2024 at 7:44 PM
Research shows that disabled people need at least 28% more income, to achieve a standard of living similar to that of non-disabled people.
search.app/BFdu1LBFS4RH...
search.app/BFdu1LBFS4RH...
Myalgic Encephalomyelitis is a disabling neurological disease without a single approved treatment.
encephalogirl.substack.com/p/brains-neu...
encephalogirl.substack.com/p/brains-neu...
Brains! Neuroinflammation in ME/CFS
ME/CFS classified as neurological disease by World Health Organization (WHO). Here's why.
encephalogirl.substack.com
November 19, 2024 at 9:01 PM
Myalgic Encephalomyelitis is a disabling neurological disease without a single approved treatment.
encephalogirl.substack.com/p/brains-neu...
encephalogirl.substack.com/p/brains-neu...
Reposted
Time to go to bat again, folks. They're trying to ram the bill through that would allow the Dep't of Treasury to arbitrarily label a nonprofit a terrorist organization and strip it of its 501(c) status.
Can't emphasize enough that no evidence is required to do so.
theintercept.com/2024/11/15/n...
Can't emphasize enough that no evidence is required to do so.
theintercept.com/2024/11/15/n...
House GOP Moves to Ram Through Bill That Gives Trump Unilateral Power to Kill Nonprofits
A bill to give Donald Trump power to kill nonprofits is still supported by dozens of Democrats — giving the GOP plenty of breathing room.
theintercept.com
November 17, 2024 at 4:50 PM
Time to go to bat again, folks. They're trying to ram the bill through that would allow the Dep't of Treasury to arbitrarily label a nonprofit a terrorist organization and strip it of its 501(c) status.
Can't emphasize enough that no evidence is required to do so.
theintercept.com/2024/11/15/n...
Can't emphasize enough that no evidence is required to do so.
theintercept.com/2024/11/15/n...
Reposted
New starter pack, "ME/CFS advocates": "Here are some interesting accounts of #MECFS advocates to follow that are perhaps lesser known but nonetheless very valuable"
go.bsky.app/PZW1Sab
Honoured to be included by @mecfsskeptic.bsky.social who I consider one of the most insightful advocates
#PwME
go.bsky.app/PZW1Sab
Honoured to be included by @mecfsskeptic.bsky.social who I consider one of the most insightful advocates
#PwME
November 17, 2024 at 2:46 PM
New starter pack, "ME/CFS advocates": "Here are some interesting accounts of #MECFS advocates to follow that are perhaps lesser known but nonetheless very valuable"
go.bsky.app/PZW1Sab
Honoured to be included by @mecfsskeptic.bsky.social who I consider one of the most insightful advocates
#PwME
go.bsky.app/PZW1Sab
Honoured to be included by @mecfsskeptic.bsky.social who I consider one of the most insightful advocates
#PwME
Reposted
HUGE THANKS 🏆 to everyone who has signed so far!
We're at ✨8300 signatures✨-- can you help get us to 10k?
This petition closes TODAY so please sign and share, not just here but w/your networks!
We're at ✨8300 signatures✨-- can you help get us to 10k?
This petition closes TODAY so please sign and share, not just here but w/your networks!
✨This petition will close TOMORROW, Nov 15!✨ We're over 7k-- next stop 10k!
In this political climate, it's more important than ever to tell NIH that we need to fund infection-associated chronic illnesses.
Sign & share widely!
US signers: lnkd.in/e99rsvdT
International signers: lnkd.in/e3TpjnTE
In this political climate, it's more important than ever to tell NIH that we need to fund infection-associated chronic illnesses.
Sign & share widely!
US signers: lnkd.in/e99rsvdT
International signers: lnkd.in/e3TpjnTE
November 15, 2024 at 5:34 PM
HUGE THANKS 🏆 to everyone who has signed so far!
We're at ✨8300 signatures✨-- can you help get us to 10k?
This petition closes TODAY so please sign and share, not just here but w/your networks!
We're at ✨8300 signatures✨-- can you help get us to 10k?
This petition closes TODAY so please sign and share, not just here but w/your networks!
New post!
Thanks to @galen2.bsky.social for giving me the opportunity to share your story and hype your book!
encephalogirl.substack.com/p/galen-and-...
Thanks to @galen2.bsky.social for giving me the opportunity to share your story and hype your book!
encephalogirl.substack.com/p/galen-and-...
Galen & James, a life of very severe ME
Caregiver and advocate, Galen's upcoming book shares it all
encephalogirl.substack.com
November 15, 2024 at 1:20 PM
New post!
Thanks to @galen2.bsky.social for giving me the opportunity to share your story and hype your book!
encephalogirl.substack.com/p/galen-and-...
Thanks to @galen2.bsky.social for giving me the opportunity to share your story and hype your book!
encephalogirl.substack.com/p/galen-and-...