Laurel
@dreamsatstake.bsky.social
Mostly bedridden with severe myalgic encephalomyelitis/ME
Interests: health, reading, nature, film, photography, art, travel, social issues
Former blog: www.dreamsatstake.com
Interests: health, reading, nature, film, photography, art, travel, social issues
Former blog: www.dreamsatstake.com
Reposted by Laurel
A new study sheds light on why people with ME/CFS feel worse after activity.
Findings reveal an immune system on edge, energy production that falters, and gut barrier leaks fueling inflammation.
Read more: https://bit.ly/4q3i8sV
#MECFS #PEM #Research
Findings reveal an immune system on edge, energy production that falters, and gut barrier leaks fueling inflammation.
Read more: https://bit.ly/4q3i8sV
#MECFS #PEM #Research
When the Body’s Alarm Won’t Turn Off
Blog Summary Imagine if a fire alarm kept ringing long after the smoke was gone. That’s similar to what happens in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), where the body seems…
bit.ly
October 10, 2025 at 8:05 PM
A new study sheds light on why people with ME/CFS feel worse after activity.
Findings reveal an immune system on edge, energy production that falters, and gut barrier leaks fueling inflammation.
Read more: https://bit.ly/4q3i8sV
#MECFS #PEM #Research
Findings reveal an immune system on edge, energy production that falters, and gut barrier leaks fueling inflammation.
Read more: https://bit.ly/4q3i8sV
#MECFS #PEM #Research
Reposted by Laurel
In honor of #SevereMEday, #MEAction is honored to share the Severe ME Artists Project 2025! www.meartistsproject.com/severe-me-ar...
Over 100 of you submitted photos, drawings, writing, music and videos of your work for our 5th Severe ME Artists Project!
#SevereME #UnitedForME #pwME
Over 100 of you submitted photos, drawings, writing, music and videos of your work for our 5th Severe ME Artists Project!
#SevereME #UnitedForME #pwME
August 8, 2025 at 4:01 PM
In honor of #SevereMEday, #MEAction is honored to share the Severe ME Artists Project 2025! www.meartistsproject.com/severe-me-ar...
Over 100 of you submitted photos, drawings, writing, music and videos of your work for our 5th Severe ME Artists Project!
#SevereME #UnitedForME #pwME
Over 100 of you submitted photos, drawings, writing, music and videos of your work for our 5th Severe ME Artists Project!
#SevereME #UnitedForME #pwME
Reposted by Laurel
Huge congrats to Chris Ponting and the whole Decode ME team on their preprint on #genetics of people with #MECFS!
Pre-print plus li'l video before we get into a deeper dive.
Vid: www.youtube.com/watch?v=0S5u...
Preprint: www.pure.ed.ac.uk/ws/portalfil... 🧪 🧵
Pre-print plus li'l video before we get into a deeper dive.
Vid: www.youtube.com/watch?v=0S5u...
Preprint: www.pure.ed.ac.uk/ws/portalfil... 🧪 🧵
www.pure.ed.ac.uk
August 7, 2025 at 3:15 PM
Huge congrats to Chris Ponting and the whole Decode ME team on their preprint on #genetics of people with #MECFS!
Pre-print plus li'l video before we get into a deeper dive.
Vid: www.youtube.com/watch?v=0S5u...
Preprint: www.pure.ed.ac.uk/ws/portalfil... 🧪 🧵
Pre-print plus li'l video before we get into a deeper dive.
Vid: www.youtube.com/watch?v=0S5u...
Preprint: www.pure.ed.ac.uk/ws/portalfil... 🧪 🧵
Reposted by Laurel
Scientists find link between genes and ME/chronic fatigue syndrome
Scientists find link between genes and ME/chronic fatigue syndrome
Large study suggests people’s genetics could ‘tip the balance’ on whether they would develop the illness
Scientists have found the first robust evidence that people’s genes affect their chances of developing myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), a mysterious and debilitating illness that has been neglected and dismissed for decades by many in the medical community.
Early findings from the world’s largest study into the genetics of the condition pinpointed eight regions of the human genome that were substantially different in people with an ME/CFS diagnosis compared to those without the illness. Continue reading...
www.theguardian.com
August 6, 2025 at 6:15 PM
Scientists find link between genes and ME/chronic fatigue syndrome
Reposted by Laurel
🧵 1/ 🚨 Congress slashed $859 MILLION from a key research program that includes funding for ME/CFS and other critical health conditions.
We need your help to restore it. #MECFS #CDMRP #HR3906
solvecfs.quorum.us/campaign/128...
We need your help to restore it. #MECFS #CDMRP #HR3906
solvecfs.quorum.us/campaign/128...
June 19, 2025 at 4:31 PM
🧵 1/ 🚨 Congress slashed $859 MILLION from a key research program that includes funding for ME/CFS and other critical health conditions.
We need your help to restore it. #MECFS #CDMRP #HR3906
solvecfs.quorum.us/campaign/128...
We need your help to restore it. #MECFS #CDMRP #HR3906
solvecfs.quorum.us/campaign/128...
Reposted by Laurel
KJZZ: 'UA researchers need more Arizonans to answer survey questions about COVID-19'
"I think there’s a lot more people in the community suffering from long COVID than people realize.” - Kristen Pogreba-Brown, Univ. of Arizona
www.kjzz.org/science/2025...
"I think there’s a lot more people in the community suffering from long COVID than people realize.” - Kristen Pogreba-Brown, Univ. of Arizona
www.kjzz.org/science/2025...
UA researchers need more Arizonans to answer survey questions about COVID-19
Researchers say there’s still a lot to learn about COVID-19. And a team at the University of Arizona needs help from the public to collect more data about the virus.
www.kjzz.org
June 10, 2025 at 11:12 PM
KJZZ: 'UA researchers need more Arizonans to answer survey questions about COVID-19'
"I think there’s a lot more people in the community suffering from long COVID than people realize.” - Kristen Pogreba-Brown, Univ. of Arizona
www.kjzz.org/science/2025...
"I think there’s a lot more people in the community suffering from long COVID than people realize.” - Kristen Pogreba-Brown, Univ. of Arizona
www.kjzz.org/science/2025...
Reposted by Laurel
Finding the Key? Could Unraveling T-cell Exhaustion Solve ME/CFS and Long COVID #MECFS #longcovid www.healthrising.org/blog/2025/05...
Finding the Key? Could Unraveling T-cell Exhaustion Solve ME/CFS and Long COVID - Health Rising
Researchers assessing T-cell exhaustion in ME/CFS and long COVID could ultimately identify what caused these diseases.
www.healthrising.org
May 17, 2025 at 5:45 PM
Finding the Key? Could Unraveling T-cell Exhaustion Solve ME/CFS and Long COVID #MECFS #longcovid www.healthrising.org/blog/2025/05...
Reposted by Laurel
Call Congress to let your Members know the #MillionsMissing were outside their door today! Ask your Members to oppose Medicaid cuts & not force desperately ill people to work to keep their healthcare. Urge Congress to support ME/CFS Research.
Call Script: bit.ly/44uSkxJ
#DisabilitySOS #Medicaid
Call Script: bit.ly/44uSkxJ
#DisabilitySOS #Medicaid
![red rectangle with white box in the middle with the below call script under the text "Call Congress."
I'm calling to urge [SENATOR / REP’S NAME] to support medical research at NIH and to protect Medicaid and Telehealth as it is lifesaving to people with ME. I’m one of the millions of people missing from their lives due to the disease myalgic encephalomyelitis, also known as ME/CFS.
ME/CFS is a highly disabling disease. 25% of people are homebound or bed bound. Yet we are one of the most under researched diseases by disease burden. We desperately need access to care, treatment, and funding for research. And most importantly, we need champions to support us.
Today, on ME/CFS Awareness Day, I’m asking [SENATOR / REP’S NAME] to champion people with ME, vote for research and vote against Medicaid cuts. Thank you. ”](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:hedpcce7vylvdgibxuxjsuzb/bafkreid2ourypfvpbuegfomtnavvi2o5i3cd6q6mldw4tafabel77nljvu@jpeg)
May 12, 2025 at 7:16 PM
Call Congress to let your Members know the #MillionsMissing were outside their door today! Ask your Members to oppose Medicaid cuts & not force desperately ill people to work to keep their healthcare. Urge Congress to support ME/CFS Research.
Call Script: bit.ly/44uSkxJ
#DisabilitySOS #Medicaid
Call Script: bit.ly/44uSkxJ
#DisabilitySOS #Medicaid
Reposted by Laurel
8/
May is #MyalgicEncephalomyelitis (M.E.) Awareness Month. You can help by sharing +/or liking this video.
It was made by a woman, Laurel, with severe ME @dreamsatstake.bsky.social Living with Severe ME (5 minutes 13 seconds)
youtu.be/LvweCk44WHs
Day 8
#SevereME #SevereCFS
May is #MyalgicEncephalomyelitis (M.E.) Awareness Month. You can help by sharing +/or liking this video.
It was made by a woman, Laurel, with severe ME @dreamsatstake.bsky.social Living with Severe ME (5 minutes 13 seconds)
youtu.be/LvweCk44WHs
Day 8
#SevereME #SevereCFS
Living with Severe ME: Laurel's CFSAC Testimony (2009)
YouTube video by Laurel B
youtu.be
May 8, 2025 at 10:59 AM
8/
May is #MyalgicEncephalomyelitis (M.E.) Awareness Month. You can help by sharing +/or liking this video.
It was made by a woman, Laurel, with severe ME @dreamsatstake.bsky.social Living with Severe ME (5 minutes 13 seconds)
youtu.be/LvweCk44WHs
Day 8
#SevereME #SevereCFS
May is #MyalgicEncephalomyelitis (M.E.) Awareness Month. You can help by sharing +/or liking this video.
It was made by a woman, Laurel, with severe ME @dreamsatstake.bsky.social Living with Severe ME (5 minutes 13 seconds)
youtu.be/LvweCk44WHs
Day 8
#SevereME #SevereCFS
Reposted by Laurel
The ME/CFS Research Roadmap was a major achievement. NIH pulled in researchers, clinicians and advocates to set the course for ME/CFS for the foreseeable future. Now we are sitting by the side of the road, Roadmap in hand, with no resources. Please sign this letter calling for $50 million in funding
We are fighting for funding for the ME/CFS Research Roadmap.
We have a letter urging Dr. Bhattacharya to allocate $50 million to fund the ME/CFS Research Roadmap.
Sign our new letter now: bit.ly/MEcfsRoadmap
The more signatures we gather, the louder our call for action.
#PwME #MECFS #NIH
We have a letter urging Dr. Bhattacharya to allocate $50 million to fund the ME/CFS Research Roadmap.
Sign our new letter now: bit.ly/MEcfsRoadmap
The more signatures we gather, the louder our call for action.
#PwME #MECFS #NIH
May 5, 2025 at 8:50 PM
The ME/CFS Research Roadmap was a major achievement. NIH pulled in researchers, clinicians and advocates to set the course for ME/CFS for the foreseeable future. Now we are sitting by the side of the road, Roadmap in hand, with no resources. Please sign this letter calling for $50 million in funding
If you are able, please consider a donation to help Jenny get the life-saving surgery she needs in the U.S. Donations will be matched today and tomorrow up to £5000. Thank you!
A message from my Mum and also news that donations are going to be matched on the 29th and 30th April (up to the amount of £5000): www.jkrowbory.co.uk/2025/04/dona...
April 29, 2025 at 3:02 PM
If you are able, please consider a donation to help Jenny get the life-saving surgery she needs in the U.S. Donations will be matched today and tomorrow up to £5000. Thank you!
Reposted by Laurel
🧵
Good to see this article with some interesting people from the field quoted (e.g. Lipkin, Pollack, Sieverts, @exceedhergrasp1.bsky.social):
"Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... Again"
www.salon.com/2025/04/01/a...
#MEcfs #LongCovid
1/
Good to see this article with some interesting people from the field quoted (e.g. Lipkin, Pollack, Sieverts, @exceedhergrasp1.bsky.social):
"Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... Again"
www.salon.com/2025/04/01/a...
#MEcfs #LongCovid
1/
April 2, 2025 at 4:59 PM
🧵
Good to see this article with some interesting people from the field quoted (e.g. Lipkin, Pollack, Sieverts, @exceedhergrasp1.bsky.social):
"Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... Again"
www.salon.com/2025/04/01/a...
#MEcfs #LongCovid
1/
Good to see this article with some interesting people from the field quoted (e.g. Lipkin, Pollack, Sieverts, @exceedhergrasp1.bsky.social):
"Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... Again"
www.salon.com/2025/04/01/a...
#MEcfs #LongCovid
1/
Reposted by Laurel
NEW: The CDC has been gutted this morning. Thousands of CDC employees who worked on things like preventing HIV and lead poisoning have been told they were subject to a reduction in force. Experts say people will die.
from me, @makenakelly.bsky.social, @knibbs.bsky.social:
from me, @makenakelly.bsky.social, @knibbs.bsky.social:
The CDC Has Been Gutted
Thousands of CDC employees who worked on things like preventing HIV and lead poisoning have been told they were subject to a reduction in force. Experts say people will die.
www.wired.com
April 1, 2025 at 3:18 PM
NEW: The CDC has been gutted this morning. Thousands of CDC employees who worked on things like preventing HIV and lead poisoning have been told they were subject to a reduction in force. Experts say people will die.
from me, @makenakelly.bsky.social, @knibbs.bsky.social:
from me, @makenakelly.bsky.social, @knibbs.bsky.social:
Reposted by Laurel
Donald Trump and Elon Musk have frozen funding for federal programs that provide support and sustenance to dozens of millions of older adults and people with disabilities, including Meals on Wheels.
Agency for older adults, people with disabilities to be shuttered under HHS cuts
In 2022, the Administration for Community Living provided more than 261 million meals to older adults, assistance such as respite care to more than 1.5 million family caregivers, and independent-livin...
www.marketwatch.com
March 30, 2025 at 11:27 PM
Donald Trump and Elon Musk have frozen funding for federal programs that provide support and sustenance to dozens of millions of older adults and people with disabilities, including Meals on Wheels.
Reposted by Laurel
More than 21 million Americans lack ready access to a birth certificate or passport, which could be required to register to vote if Congress passes the SAVE Act. Many more, such as women who changed their name when they got married, don’t have one of these documents with their current name on it.
Voting Rights Act at 60: Congress Could Hit New Low with SAVE Act
The new legislation would require American citizens to produce documents like a passport or birth certificate to register to vote.
www.brennancenter.org
March 31, 2025 at 4:06 PM
More than 21 million Americans lack ready access to a birth certificate or passport, which could be required to register to vote if Congress passes the SAVE Act. Many more, such as women who changed their name when they got married, don’t have one of these documents with their current name on it.
Reposted by Laurel
Fierce Biotech: 'It's just ugly': Federal funding cuts to Columbia University leave chronic fatigue research in limbo'
“The field of ME/CFS is ripe for clinical trials,” Lipkin, who directs the center...“These cuts have brought our work to a dead halt.”
www.fiercebiotech.com/research/stu...
“The field of ME/CFS is ripe for clinical trials,” Lipkin, who directs the center...“These cuts have brought our work to a dead halt.”
www.fiercebiotech.com/research/stu...
'It's just ugly': Federal funding cuts to Columbia University leave chronic fatigue research in limbo
Earlier this month, Ian Lipkin, M.D., and his team at Columbia University submitted a paper for publication that suggests certain approved drugs could possibly be repurposed for a severe fatigue co | ...
www.fiercebiotech.com
March 29, 2025 at 4:58 PM
Fierce Biotech: 'It's just ugly': Federal funding cuts to Columbia University leave chronic fatigue research in limbo'
“The field of ME/CFS is ripe for clinical trials,” Lipkin, who directs the center...“These cuts have brought our work to a dead halt.”
www.fiercebiotech.com/research/stu...
“The field of ME/CFS is ripe for clinical trials,” Lipkin, who directs the center...“These cuts have brought our work to a dead halt.”
www.fiercebiotech.com/research/stu...
Reposted by Laurel
What a precious and rare win!!! I know so many of you advocates poured precious resources to fight for this!!! What an incredible feat. Thank you to all of you who fought for RECOVER!!!!
thesicktimes.org/2025/03/28/u...
thesicktimes.org/2025/03/28/u...
March 28, 2025 at 9:08 PM
What a precious and rare win!!! I know so many of you advocates poured precious resources to fight for this!!! What an incredible feat. Thank you to all of you who fought for RECOVER!!!!
thesicktimes.org/2025/03/28/u...
thesicktimes.org/2025/03/28/u...
Trump Abolishes The Office That Supports Many Seniors And People With Disabilities
www.forbes.com/sites/howard...
www.forbes.com/sites/howard...
Trump Abolishes The Office That Supports Many Seniors And People With Disabilities
The elimination of the Administration for Community Living (ACL) will be a major blow to older adults and people with disabilities.
www.forbes.com
March 28, 2025 at 12:51 PM
Trump Abolishes The Office That Supports Many Seniors And People With Disabilities
www.forbes.com/sites/howard...
www.forbes.com/sites/howard...
Reposted by Laurel
CBS News: 'Columbia University faces federal deadline to make changes or lose $400 million in funds'
'Dr. Ian Lipkin is the director of Columbia University's Center for Solutions for ME/CFS..'
"We really felt as though we were on the cusp..."
www.cbsnews.com/newyork/news...
'Dr. Ian Lipkin is the director of Columbia University's Center for Solutions for ME/CFS..'
"We really felt as though we were on the cusp..."
www.cbsnews.com/newyork/news...
Columbia University faces federal deadline to make changes or lose $400 million in funds
The Trump administration's deadline to Columbia University to make changes is set for the end of the day Thursday.
www.cbsnews.com
March 20, 2025 at 5:43 PM
CBS News: 'Columbia University faces federal deadline to make changes or lose $400 million in funds'
'Dr. Ian Lipkin is the director of Columbia University's Center for Solutions for ME/CFS..'
"We really felt as though we were on the cusp..."
www.cbsnews.com/newyork/news...
'Dr. Ian Lipkin is the director of Columbia University's Center for Solutions for ME/CFS..'
"We really felt as though we were on the cusp..."
www.cbsnews.com/newyork/news...
"The Columbia center, housed in the public health school, is one of few places in the country fully devoted to studying the disabling condition." #mecfs
A large research program into myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, has been forced to shut down because of Trump administration cuts earlier this month to Columbia University’s funding.
ME/CFS research program shuts down at Columbia after Trump cuts
ME/CFS, which affects millions of Americans, has few dedicated research centers. Now the one at Columbia has been shut down over Trump funding cuts.
buff.ly
March 19, 2025 at 11:48 PM
"The Columbia center, housed in the public health school, is one of few places in the country fully devoted to studying the disabling condition." #mecfs
Reposted by Laurel
Please contact your U.S. representatives about extending telehealth coverage on traditional Medicare! This is lifesaving for many people with ME/CFS. It also impacts people with other disabilites, chronic diseases and our beloved elders.
Link below and here: www.meactions.org/telehealth #MEAction
Link below and here: www.meactions.org/telehealth #MEAction
Telehealth | Take Action
Protect telehealth for people with ME and Long COVID before the service expires on March 31, 2025!
www.meactions.org
February 28, 2025 at 7:41 PM
Please contact your U.S. representatives about extending telehealth coverage on traditional Medicare! This is lifesaving for many people with ME/CFS. It also impacts people with other disabilites, chronic diseases and our beloved elders.
Link below and here: www.meactions.org/telehealth #MEAction
Link below and here: www.meactions.org/telehealth #MEAction
Reposted by Laurel
I wonder how many people have ever experienced their brain physically running out of energy making it so they cannot use their mind and have to lie still, unthinking, unfeeling - merely existing in a body. This I believe is a torture no one but #MECFS patients understand.
February 27, 2025 at 4:30 PM
I wonder how many people have ever experienced their brain physically running out of energy making it so they cannot use their mind and have to lie still, unthinking, unfeeling - merely existing in a body. This I believe is a torture no one but #MECFS patients understand.
Reposted by Laurel
👀
"Right now, it appears people with viral disease onset (EBV, CMV, HHV-6) or SARs-CoV-2 (coronavirus) are responding best, and Simmaron will focus on this subset in the Phase II trial. They see responses in people with other subsets (autoantibodies, MCAS, etc.) but not as frequently."
"Right now, it appears people with viral disease onset (EBV, CMV, HHV-6) or SARs-CoV-2 (coronavirus) are responding best, and Simmaron will focus on this subset in the Phase II trial. They see responses in people with other subsets (autoantibodies, MCAS, etc.) but not as frequently."
Health Rising: “Simmaron’s Rapamycin ME/CFS Trial Moves Forward: The Goal – FDA Approval”
“Gunnar reported that with most of the results in, a significant percentage of patients were considered responders.”
www.healthrising.org/blog/2025/02...
“Gunnar reported that with most of the results in, a significant percentage of patients were considered responders.”
www.healthrising.org/blog/2025/02...
Simmaron's Rapamycin ME/CFS Trial Moves Forward: The Goal - FDA Approval - Health Rising
A successful rapamycin clinical trial in chronic fatigue syndrome (ME/CFS) leads to more studies and perhaps FDA approval
www.healthrising.org
February 2, 2025 at 7:18 PM
👀
"Right now, it appears people with viral disease onset (EBV, CMV, HHV-6) or SARs-CoV-2 (coronavirus) are responding best, and Simmaron will focus on this subset in the Phase II trial. They see responses in people with other subsets (autoantibodies, MCAS, etc.) but not as frequently."
"Right now, it appears people with viral disease onset (EBV, CMV, HHV-6) or SARs-CoV-2 (coronavirus) are responding best, and Simmaron will focus on this subset in the Phase II trial. They see responses in people with other subsets (autoantibodies, MCAS, etc.) but not as frequently."
Reposted by Laurel
link.springer.com/article/10.1...
"Interestingly, these mice displayed worsened muscle fatigue during 2-day post-treadmill exercise, suggesting the critical role of chronic mTOR activation in potential PEM pathogenesis."
"Interestingly, these mice displayed worsened muscle fatigue during 2-day post-treadmill exercise, suggesting the critical role of chronic mTOR activation in potential PEM pathogenesis."
Inactivation of ATG13 stimulates chronic demyelinating pathologies in muscle-serving nerves and spinal cord - Immunologic Research
Abstract Chronic muscle fatigue is a condition characterized by debilitating muscle weakness and pain. Based on our recent finding to study the potential effect of mTOR on ATG13 inactivation in chroni...
link.springer.com
January 11, 2025 at 6:53 PM
link.springer.com/article/10.1...
"Interestingly, these mice displayed worsened muscle fatigue during 2-day post-treadmill exercise, suggesting the critical role of chronic mTOR activation in potential PEM pathogenesis."
"Interestingly, these mice displayed worsened muscle fatigue during 2-day post-treadmill exercise, suggesting the critical role of chronic mTOR activation in potential PEM pathogenesis."