Laurel

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…

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

Frame hanging on gallery wall with bench in front. Text in frame: Severe ME Artists Project Gallery 2025 Now open for virtual showing at #MEAction website: bit.ly/SMEAP25

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

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... 🧪 🧵

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...

Scientists find link between genes and ME/chronic fatigue syndrome

A square graphic with blue and green abstract shapes in the corners and an alarm emoji at the top of the page reads "Medical Research Funding Slashed 57%. Congress cut $859 million from CDMRP in FY25--putting ME/CFS research at serious risk. H.R. 3906 would restore funding. Tell Congress: COSPONSOR NOW." At the bottom of the graphic are a multicolored image of the U.S. Capitol Building and Solve's orange and green double helix logo.

🧵 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...

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.

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...

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.

Finding the Key? Could Unraveling T-cell Exhaustion Solve ME/CFS and Long COVID #MECFS #longcovid www.healthrising.org/blog/2025/05...

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. ”

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

YouTube video by Laurel B Living with Severe ME: Laurel's CFSAC Testimony (2009)

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

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!

Long COVID activists fought Trump team’s research cuts and won ― for now Success gives hope to scientists and advocates who managed to get millions of dollars in grants restored.

Activism works. Case in point: #LongCovid
@nature.com
www.nature.com/articles/d41...

Salon logo Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... Again Budget cuts and the dismantling of federal agencies are making it harder for patients with long COVID and ME/CFS By Elizabeth Hlavinka Staff Writer Published April 1, 2025 5:30AM (EDT) Updated April 1, 2025 12:55PM (EDT)

🧵
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/

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.

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:

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...

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.

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.

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.

'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 | ...

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...

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...

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.

Trump Abolishes The Office That Supports Many Seniors And People With Disabilities
www.forbes.com/sites/howard...

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.

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...

"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

Telehealth | Take Action Protect telehealth for people with ME and Long COVID before the service expires on March 31, 2025!

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

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.

👀
"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."

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/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."

Study shows T cell exhaustion in #MECFS
www.meresearch.org.uk/t-cell-exhau...

@meresearchuk.bsky.social

So sorry you are missing out on so much, Whitney. I can relate after over 20 years bedridden with #severeME. So sorry to hear you have #covid on top of it all right now. Hope you feel better soon. Thinking of you.

YouTube video by Broken Battery ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment.

youtu.be/RiwX9Y0NbiQ?...

With regards to HIV, it took over a decade of full on activism to evoke medical and political change. With regards to #LongCovid and #MECFS, patients disappear into their darkened rooms, unable to manifest themselves in their own life let alone public life.

When you’re chronically ill - your baseline is everything. You will protect it at all costs.

Non disabled people can’t understand how much independence and autonomy means to us. Whatever small amount we have left - is priceless.

That’s why we don’t take necessary risks. We know what’s at stake.