Jess
@jemdawg.bsky.social
scientist turned professional sick person
living with ME
living with ME
Reposted by Jess
As a person with Very Severe ME, I hate how articles describe ME.
“chronic fatigue, some people can’t exercise and work, often people have headaches and nausea”.
I haven’t
* left my bed in 2 years
* spoke in 1.5 years
* heard a human voice in 1.5 years
And that’s how you describe my illness?
“chronic fatigue, some people can’t exercise and work, often people have headaches and nausea”.
I haven’t
* left my bed in 2 years
* spoke in 1.5 years
* heard a human voice in 1.5 years
And that’s how you describe my illness?
March 20, 2025 at 2:03 PM
As a person with Very Severe ME, I hate how articles describe ME.
“chronic fatigue, some people can’t exercise and work, often people have headaches and nausea”.
I haven’t
* left my bed in 2 years
* spoke in 1.5 years
* heard a human voice in 1.5 years
And that’s how you describe my illness?
“chronic fatigue, some people can’t exercise and work, often people have headaches and nausea”.
I haven’t
* left my bed in 2 years
* spoke in 1.5 years
* heard a human voice in 1.5 years
And that’s how you describe my illness?
Reposted by Jess
“Cure ME/CFS” banner at a German football league match.
I love this kind of activism—it builds public awareness and sympathy in ways otherwise impossible.
Guerrilla actions are so hard for pwME, who often don’t have the energy. But thankfully, some still manage to make it happen.
@emptystands.me
I love this kind of activism—it builds public awareness and sympathy in ways otherwise impossible.
Guerrilla actions are so hard for pwME, who often don’t have the energy. But thankfully, some still manage to make it happen.
@emptystands.me
In der Südkurve gab es heute Support für Empty Stands. 🫶
(Bestimmt hat jemand bessere Bilder, ich hatte ganz klassisch eine Fahne im Sichtfeld.)
@emptystands.me
@ffhambu.bsky.social
@bdk1.bsky.social
(Bestimmt hat jemand bessere Bilder, ich hatte ganz klassisch eine Fahne im Sichtfeld.)
@emptystands.me
@ffhambu.bsky.social
@bdk1.bsky.social
April 7, 2025 at 4:45 PM
“Cure ME/CFS” banner at a German football league match.
I love this kind of activism—it builds public awareness and sympathy in ways otherwise impossible.
Guerrilla actions are so hard for pwME, who often don’t have the energy. But thankfully, some still manage to make it happen.
@emptystands.me
I love this kind of activism—it builds public awareness and sympathy in ways otherwise impossible.
Guerrilla actions are so hard for pwME, who often don’t have the energy. But thankfully, some still manage to make it happen.
@emptystands.me
Reposted by Jess
If you head to rollingstone.com right now, you will see our rockstar activists from our DC protest in front of the White House. That's kind of like making the cover, right?
I wanted to share this image as Long COVID Awareness Day comes to close.
Paywalled:
www.rollingstone.com/culture/cult...
I wanted to share this image as Long COVID Awareness Day comes to close.
Paywalled:
www.rollingstone.com/culture/cult...
March 16, 2025 at 3:25 AM
If you head to rollingstone.com right now, you will see our rockstar activists from our DC protest in front of the White House. That's kind of like making the cover, right?
I wanted to share this image as Long COVID Awareness Day comes to close.
Paywalled:
www.rollingstone.com/culture/cult...
I wanted to share this image as Long COVID Awareness Day comes to close.
Paywalled:
www.rollingstone.com/culture/cult...
Reposted by Jess
I have been sick with Long COVID for 3 years.
Bedridden for nearly two years.
Unable to have a conversation for 1.5 years.
Long COVID is devastating, and it doesn’t always get better with time.
#LongCOVIDAwarenessDay
Bedridden for nearly two years.
Unable to have a conversation for 1.5 years.
Long COVID is devastating, and it doesn’t always get better with time.
#LongCOVIDAwarenessDay
March 15, 2025 at 5:51 PM
I have been sick with Long COVID for 3 years.
Bedridden for nearly two years.
Unable to have a conversation for 1.5 years.
Long COVID is devastating, and it doesn’t always get better with time.
#LongCOVIDAwarenessDay
Bedridden for nearly two years.
Unable to have a conversation for 1.5 years.
Long COVID is devastating, and it doesn’t always get better with time.
#LongCOVIDAwarenessDay
Reposted by Jess
Chronic illness means learning to live with unimaginable amounts of pain & suffering
It means adapting to being trapped in a body that you don’t understand. That never feels safe
It’s learning that hospitals won’t help you, friends & family will leave you, and your “normal” is forever changed.
It means adapting to being trapped in a body that you don’t understand. That never feels safe
It’s learning that hospitals won’t help you, friends & family will leave you, and your “normal” is forever changed.
March 6, 2025 at 8:53 AM
Chronic illness means learning to live with unimaginable amounts of pain & suffering
It means adapting to being trapped in a body that you don’t understand. That never feels safe
It’s learning that hospitals won’t help you, friends & family will leave you, and your “normal” is forever changed.
It means adapting to being trapped in a body that you don’t understand. That never feels safe
It’s learning that hospitals won’t help you, friends & family will leave you, and your “normal” is forever changed.
Reposted by Jess
Last night I stood up for those who need Medicaid, Medicare, and Social Security. Democrats will never abandon the fight to make sure every American has a safe, healthy, and financially secure life. #ISaidWhatISaid
March 6, 2025 at 12:46 AM
Last night I stood up for those who need Medicaid, Medicare, and Social Security. Democrats will never abandon the fight to make sure every American has a safe, healthy, and financially secure life. #ISaidWhatISaid
Reposted by Jess
🚨 SciShow just covered ME/CFS!
⚠️ Key clarification: Don’t push past your limit, even if you don't feel worsening symptoms. Clinicians recommend doing 50% of what you think you can to avoid crashes.
🎥 Watch and share: loom.ly/CeL4Zr4
#pwME #MECFS #LongCOVID
⚠️ Key clarification: Don’t push past your limit, even if you don't feel worsening symptoms. Clinicians recommend doing 50% of what you think you can to avoid crashes.
🎥 Watch and share: loom.ly/CeL4Zr4
#pwME #MECFS #LongCOVID
Exercise Actually Makes Chronic Fatigue Syndrome Worse
Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.
loom.ly
March 5, 2025 at 5:12 PM
🚨 SciShow just covered ME/CFS!
⚠️ Key clarification: Don’t push past your limit, even if you don't feel worsening symptoms. Clinicians recommend doing 50% of what you think you can to avoid crashes.
🎥 Watch and share: loom.ly/CeL4Zr4
#pwME #MECFS #LongCOVID
⚠️ Key clarification: Don’t push past your limit, even if you don't feel worsening symptoms. Clinicians recommend doing 50% of what you think you can to avoid crashes.
🎥 Watch and share: loom.ly/CeL4Zr4
#pwME #MECFS #LongCOVID
Reposted by Jess
If Republicans make massive cuts to Medicaid, it will impact all aspects of our health care system. Millions of kids will lose coverage, hospital and insurance rates will soar and nursing homes will shut down.
All this in order to give huge tax breaks to billionaires.
NO CUTS TO MEDICAID.
All this in order to give huge tax breaks to billionaires.
NO CUTS TO MEDICAID.
March 1, 2025 at 6:18 PM
If Republicans make massive cuts to Medicaid, it will impact all aspects of our health care system. Millions of kids will lose coverage, hospital and insurance rates will soar and nursing homes will shut down.
All this in order to give huge tax breaks to billionaires.
NO CUTS TO MEDICAID.
All this in order to give huge tax breaks to billionaires.
NO CUTS TO MEDICAID.
Reposted by Jess
Q: Has COVID-19 increased ME/CFS cases?
A: Before 2020, 1-3 million people in the U.S. had ME/CFS. Now, research suggests that number may be as high as 15 million due to COVID-19. We need more awareness, research, and care! 💙 #MECFS #LongCOVID #IACCs #ChronicIllness #BHC @openmedf.bsky.social
A: Before 2020, 1-3 million people in the U.S. had ME/CFS. Now, research suggests that number may be as high as 15 million due to COVID-19. We need more awareness, research, and care! 💙 #MECFS #LongCOVID #IACCs #ChronicIllness #BHC @openmedf.bsky.social
February 18, 2025 at 5:41 PM
Q: Has COVID-19 increased ME/CFS cases?
A: Before 2020, 1-3 million people in the U.S. had ME/CFS. Now, research suggests that number may be as high as 15 million due to COVID-19. We need more awareness, research, and care! 💙 #MECFS #LongCOVID #IACCs #ChronicIllness #BHC @openmedf.bsky.social
A: Before 2020, 1-3 million people in the U.S. had ME/CFS. Now, research suggests that number may be as high as 15 million due to COVID-19. We need more awareness, research, and care! 💙 #MECFS #LongCOVID #IACCs #ChronicIllness #BHC @openmedf.bsky.social
Reposted by Jess
#MEAction will host a virtual town hall on February 25th at 2 pm PST/5 pm EST to discuss the impact of recent executive orders and other policy discussions that could affect the ME community. It will be recorded.
RSVP: us06web.zoom.us/webinar/regi...
#pwME #MECFS #LongCovid #disability #MyalgicE
RSVP: us06web.zoom.us/webinar/regi...
#pwME #MECFS #LongCovid #disability #MyalgicE
February 18, 2025 at 6:49 PM
#MEAction will host a virtual town hall on February 25th at 2 pm PST/5 pm EST to discuss the impact of recent executive orders and other policy discussions that could affect the ME community. It will be recorded.
RSVP: us06web.zoom.us/webinar/regi...
#pwME #MECFS #LongCovid #disability #MyalgicE
RSVP: us06web.zoom.us/webinar/regi...
#pwME #MECFS #LongCovid #disability #MyalgicE
Reposted by Jess
Veterans deserve the best health care available. At a time when the VA is already understaffed, these layoffs will hurt veterans. Unacceptable.
Trump must not cut VA health care so that he can give tax breaks to Musk and other billionaires.
The VA must rescind this order.
Trump must not cut VA health care so that he can give tax breaks to Musk and other billionaires.
The VA must rescind this order.
February 18, 2025 at 3:38 PM
Veterans deserve the best health care available. At a time when the VA is already understaffed, these layoffs will hurt veterans. Unacceptable.
Trump must not cut VA health care so that he can give tax breaks to Musk and other billionaires.
The VA must rescind this order.
Trump must not cut VA health care so that he can give tax breaks to Musk and other billionaires.
The VA must rescind this order.
Reposted by Jess
Keith Haring died of AIDS aged 31 on 16 Feb 1990.
One of his last works, Unfinished Painting, was deliberately incomplete, reflecting the devastating, unquantifiable loss to the arts due to AIDS.
#LGBTplusHistoryMonth
One of his last works, Unfinished Painting, was deliberately incomplete, reflecting the devastating, unquantifiable loss to the arts due to AIDS.
#LGBTplusHistoryMonth
February 16, 2025 at 9:00 AM
Keith Haring died of AIDS aged 31 on 16 Feb 1990.
One of his last works, Unfinished Painting, was deliberately incomplete, reflecting the devastating, unquantifiable loss to the arts due to AIDS.
#LGBTplusHistoryMonth
One of his last works, Unfinished Painting, was deliberately incomplete, reflecting the devastating, unquantifiable loss to the arts due to AIDS.
#LGBTplusHistoryMonth
Reposted by Jess
It’s common to start out mild and become more severe, either through more viral exposures (very common now), or by “pushing through” symptoms and over-exerting— something most doctors ADVISE for new ME patients. Medical sexism means they think we’re sad, not severely ill.
February 15, 2025 at 8:58 AM
It’s common to start out mild and become more severe, either through more viral exposures (very common now), or by “pushing through” symptoms and over-exerting— something most doctors ADVISE for new ME patients. Medical sexism means they think we’re sad, not severely ill.
Reposted by Jess
Hi, it’s me, one (1!) COVID infection in March 2020 ruined my entire life. I’m bedbound and unable to work, maybe forever 🫠
The NIH recently published a study: one of every 22 covid infections triggers ME. People are not being warned that their whole life could just vanish. Journalism literally exists for situations like this. #JohnVsJonVsME
#GreatestMEdicalScandal
💗💝💕💝💗
www.livescience.com/health/coron...
#GreatestMEdicalScandal
💗💝💕💝💗
www.livescience.com/health/coron...
1 in 22 COVID survivors develop debilitating chronic syndrome
A study suggests that catching COVID-19 significantly raises the risk of developing ME/CFS (formerly called "chronic fatigue syndrome"), a typically lifelong condition that can be debilitating.
www.livescience.com
February 16, 2025 at 2:35 AM
Hi, it’s me, one (1!) COVID infection in March 2020 ruined my entire life. I’m bedbound and unable to work, maybe forever 🫠
Reposted by Jess
I see a lot of people saying now is the time to get out of the U.S. if you can.
Please remember most disabled people can’t leave. It’s incredibly difficult to immigrate to another country when you have documented medical issues. Many are also too sick to endure a move.
We must fight for them.
Please remember most disabled people can’t leave. It’s incredibly difficult to immigrate to another country when you have documented medical issues. Many are also too sick to endure a move.
We must fight for them.
February 15, 2025 at 5:09 AM
I see a lot of people saying now is the time to get out of the U.S. if you can.
Please remember most disabled people can’t leave. It’s incredibly difficult to immigrate to another country when you have documented medical issues. Many are also too sick to endure a move.
We must fight for them.
Please remember most disabled people can’t leave. It’s incredibly difficult to immigrate to another country when you have documented medical issues. Many are also too sick to endure a move.
We must fight for them.
Reposted by Jess
And no, contrary to many ableds’ imaginings, becoming disabled won’t make you suddenly decide you’d be better off dead. You’ll realize you’re still you & your life is still your life & you’ll wish really badly that society didn’t devalue disabled lives & make it so freaking hard for us to survive
No one is immune from #disability.
Do yourselves a favor and reflect on that. Seriously.
#DisabilityJustice
Do yourselves a favor and reflect on that. Seriously.
#DisabilityJustice
No one is immune from disability. It can happen to anyone at anytime, regardless of how 'young and healthy' you are.
Stop believing you will be the exception, and start engaging in disability justice. It's far easier to fight for better support and treatment while you still have your health.
Stop believing you will be the exception, and start engaging in disability justice. It's far easier to fight for better support and treatment while you still have your health.
February 15, 2025 at 3:49 AM
And no, contrary to many ableds’ imaginings, becoming disabled won’t make you suddenly decide you’d be better off dead. You’ll realize you’re still you & your life is still your life & you’ll wish really badly that society didn’t devalue disabled lives & make it so freaking hard for us to survive
Reposted by Jess
I believe this one came from one of our lovely caregiver volunteers! Caregivers are so welcome in our community! Share the love!
Full video: youtu.be/nr_U0D5N9J8
#pwME #Caregiver #MECFS #LongCovid
Full video: youtu.be/nr_U0D5N9J8
#pwME #Caregiver #MECFS #LongCovid
February 14, 2025 at 10:26 PM
Reposted by Jess
Content note: death
People w/ the most severe forms of ME have died bc their bodies couldn’t generate enough energy to eat or digest food, but tell me more about how we’re just “deconditioned” & need to get over our “false illness beliefs” & try a bit harder?
#GreatestMEdicalScandal
#JohnVsJonVsME
People w/ the most severe forms of ME have died bc their bodies couldn’t generate enough energy to eat or digest food, but tell me more about how we’re just “deconditioned” & need to get over our “false illness beliefs” & try a bit harder?
#GreatestMEdicalScandal
#JohnVsJonVsME
February 15, 2025 at 1:07 AM
Content note: death
People w/ the most severe forms of ME have died bc their bodies couldn’t generate enough energy to eat or digest food, but tell me more about how we’re just “deconditioned” & need to get over our “false illness beliefs” & try a bit harder?
#GreatestMEdicalScandal
#JohnVsJonVsME
People w/ the most severe forms of ME have died bc their bodies couldn’t generate enough energy to eat or digest food, but tell me more about how we’re just “deconditioned” & need to get over our “false illness beliefs” & try a bit harder?
#GreatestMEdicalScandal
#JohnVsJonVsME
Reposted by Jess
Sexism is woven into the fabric of the #GreatestMEdicalScandal, our serious disease is treated like “girls are just crazy.” This is a huge story just waiting for attention. #JohnVsJonVsME JohnVsJon.com
@lastweektonight1.bsky.social
@thedailyshow.com
MEme c/o @diatoma.bsky.social
@lastweektonight1.bsky.social
@thedailyshow.com
MEme c/o @diatoma.bsky.social
February 15, 2025 at 12:27 AM
Sexism is woven into the fabric of the #GreatestMEdicalScandal, our serious disease is treated like “girls are just crazy.” This is a huge story just waiting for attention. #JohnVsJonVsME JohnVsJon.com
@lastweektonight1.bsky.social
@thedailyshow.com
MEme c/o @diatoma.bsky.social
@lastweektonight1.bsky.social
@thedailyshow.com
MEme c/o @diatoma.bsky.social
Reposted by Jess
The Cost of Being Rarely UNDERSTOOD
ME/CFS isn’t rare—it’s rarely understood. Patients face years of dismissal, misdiagnosis & minimal research funding. They deserve answers, not doubt.
This #RareDiseaseMonth, let’s fight for recognition, funding & hope. 💙 #MECFS #NotInvisible
ME/CFS isn’t rare—it’s rarely understood. Patients face years of dismissal, misdiagnosis & minimal research funding. They deserve answers, not doubt.
This #RareDiseaseMonth, let’s fight for recognition, funding & hope. 💙 #MECFS #NotInvisible
February 12, 2025 at 4:29 PM
The Cost of Being Rarely UNDERSTOOD
ME/CFS isn’t rare—it’s rarely understood. Patients face years of dismissal, misdiagnosis & minimal research funding. They deserve answers, not doubt.
This #RareDiseaseMonth, let’s fight for recognition, funding & hope. 💙 #MECFS #NotInvisible
ME/CFS isn’t rare—it’s rarely understood. Patients face years of dismissal, misdiagnosis & minimal research funding. They deserve answers, not doubt.
This #RareDiseaseMonth, let’s fight for recognition, funding & hope. 💙 #MECFS #NotInvisible
Reposted by Jess
Today is International Day of Women & Girls in Science.
Marie Curie, the first woman to win a Nobel Prize. Her contributions have left an indelible mark on the world of science & health & continue to inspire generations of scientists & innovators. 🔬 #WomenInScience #WomenInSTEM
Marie Curie, the first woman to win a Nobel Prize. Her contributions have left an indelible mark on the world of science & health & continue to inspire generations of scientists & innovators. 🔬 #WomenInScience #WomenInSTEM
February 11, 2025 at 7:52 AM
Today is International Day of Women & Girls in Science.
Marie Curie, the first woman to win a Nobel Prize. Her contributions have left an indelible mark on the world of science & health & continue to inspire generations of scientists & innovators. 🔬 #WomenInScience #WomenInSTEM
Marie Curie, the first woman to win a Nobel Prize. Her contributions have left an indelible mark on the world of science & health & continue to inspire generations of scientists & innovators. 🔬 #WomenInScience #WomenInSTEM
Reposted by Jess
Weekly howl that most folks who include 'brain-gut connection' and 'mind-body' in marketing conveniently ignore the 'body affecting the mind' and 'gut influencing brain' direction (and promise therapy will solve all organic issues that medicine hasn't understood well enough yet.)
February 6, 2025 at 7:20 PM
Weekly howl that most folks who include 'brain-gut connection' and 'mind-body' in marketing conveniently ignore the 'body affecting the mind' and 'gut influencing brain' direction (and promise therapy will solve all organic issues that medicine hasn't understood well enough yet.)
Reposted by Jess
This is just how it feels sometimes!
Not only can literally everything cause a crash with #mecfs - it also feels like being poisoned.
Often the dose makes the poison, at least with mild and moderate ME. For severe ME patients the cabinet keeps mainly closed.
Not only can literally everything cause a crash with #mecfs - it also feels like being poisoned.
Often the dose makes the poison, at least with mild and moderate ME. For severe ME patients the cabinet keeps mainly closed.
February 8, 2025 at 2:09 PM
This is just how it feels sometimes!
Not only can literally everything cause a crash with #mecfs - it also feels like being poisoned.
Often the dose makes the poison, at least with mild and moderate ME. For severe ME patients the cabinet keeps mainly closed.
Not only can literally everything cause a crash with #mecfs - it also feels like being poisoned.
Often the dose makes the poison, at least with mild and moderate ME. For severe ME patients the cabinet keeps mainly closed.
Reposted by Jess
For many people, their phone is a lifeline to the outside world.
25% of people with #MECFS are bed-bound or housebound.
Some of those are too sick to even use a phone.
But for those who can, it’s their only portal to community, connection, knowledge & advocacy.
#MissingMillions #pwME #LongCovid
25% of people with #MECFS are bed-bound or housebound.
Some of those are too sick to even use a phone.
But for those who can, it’s their only portal to community, connection, knowledge & advocacy.
#MissingMillions #pwME #LongCovid
February 9, 2025 at 11:54 PM
For many people, their phone is a lifeline to the outside world.
25% of people with #MECFS are bed-bound or housebound.
Some of those are too sick to even use a phone.
But for those who can, it’s their only portal to community, connection, knowledge & advocacy.
#MissingMillions #pwME #LongCovid
25% of people with #MECFS are bed-bound or housebound.
Some of those are too sick to even use a phone.
But for those who can, it’s their only portal to community, connection, knowledge & advocacy.
#MissingMillions #pwME #LongCovid