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Reposted by Wilhelmina Jenkins

It's ME(Jaime) @exceedhergrasp1.bsky.social · 14h

Just signed a letter to my reps telling them firing hundreds of people at #CDC is unacceptable.

If you're so moved, I hope you will too: actionnetwork.org/letters/writ...

#DoSomething

Write to Congress: CDC Employees must be Reinstated

**Please write now to your Senators and Representative demanding that ALL CDC employees be reinstated as part of any agreement to reopen the government.** Late on Friday, October 10, the Trump Admin...

actionnetwork.org

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Reposted by Wilhelmina Jenkins

ME/CFS Science @mecfsskeptic.bsky.social · 11h

By pointing to neurons in the brain, DecodeME provided another piece of the puzzle in understanding ME/CFS.

The big challenge is how to connect this to an immune trigger, as ME/CFS often follows an infection such as EBV or COVID-19.

ME/CFS Science @mecfsskeptic.bsky.social · 1d

1) We’ve just published our second instalment on the DecodeME results, this timing zooming in on the genes associated with ME/CFS.

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Reposted by Wilhelmina Jenkins

ME/CFS Science @mecfsskeptic.bsky.social · 21h

1) Another interesting interview of Prof Chris Ponting by David Tuller.

They talked about PRIME, a new 4-year project that will provide an infrastructure to accelerate ME/CFS research. It received 0.8 million in funding from the Medical Research Council (MRC).

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Reposted by Wilhelmina Jenkins

Solve M.E. @solveme.bsky.social · 1d

Register today for the @icancmeresearch.bsky.social online conference Nov. 4-6. The event was designed by people w/ #MECFS and the theme is “Nothing About Us Without Us.”

icancme.ca/research/202...

2025 ME Conference - ICanCME

icancme.ca

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Reposted by Wilhelmina Jenkins

#MEAction Network @meactnet.bsky.social · 1d

#MEAction is excited to announce we are partnering with the Writers Guild Initiative (WGI) again to offer creative writing workshops for people with ME and Long COVID. To learn more & get link to the application read this article:
www.meaction.net/post/apply-t...

Apply Today - Writers Guild Initiative Writing Workshops

WGI Workshops start in November. Apply today!

www.meaction.net

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Reposted by Wilhelmina Jenkins

ME/CFS Science @mecfsskeptic.bsky.social · 1d

1) We’ve just published our second instalment on the DecodeME results, this timing zooming in on the genes associated with ME/CFS.

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Reposted by Wilhelmina Jenkins

Neurologist Mom @neurologistmom.bsky.social · 4d

A new study sheds light on why people with ME/CFS feel worse after activity.

“Imagine if a fire alarm kept ringing long after the smoke was gone. That’s similar to what happens in ME/CFS, where the body seems stuck in “high alert” mode.” Lucinda Bateman, M.D.

Bateman Horne Center @batemanhornecenter.bsky.social · 4d

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

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

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Reposted by Wilhelmina Jenkins

Cynthia Johnson @minetodo.bsky.social · 4d

Dear friends and kind souls:
Please help as you can today! 💛
With gratitude, Cynthia Johnson
#StandByMEcfs #StillSickStillFighting
gofund.me/0d803d22

Donate to Financial Stability for Chronically-Ill Advocate, organized by Shane Johnson

This is a humble request for financial help for my mother, Cynthia John… Shane Johnson needs your support for Financial Stability for Chronically-Ill Advocate

gofund.me

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Reposted by Wilhelmina Jenkins

ME/CFS Science @mecfsskeptic.bsky.social · 4d

1) The Physios for ME team published a randomized trial on pacing with a heart rate monitor. It included 32 patients with ME/CFS and 15 with Long Covid.

A brief breakdown of the main results 🧵

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 4d

Great article. She put her life on the line for her people’s future. Well deserving of the Prize.

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 5d

So great!!

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Reposted by Wilhelmina Jenkins

It's ME(Jaime) @exceedhergrasp1.bsky.social · 5d

OK so I read through this study, and here are my conclusions:
- What a cool tech to examine epigenetic factors so closely!
- This is a small study
- This only differentiates severe-presenting patients from healthy controls; hasn't been used to diagnose ME/CFS *versus* other inflammatory illness. 🧪

Billy Hanlon @bhanlon15.bsky.social · 6d

Open Access Government: 'UEA develops blood test for ME/CFS with 96% accuracy'

'A groundbreaking blood test from UEA can diagnose ME/CFS with 96% accuracy, offering hope for patients and new insights into chronic fatigue syndrome'

www.openaccessgovernment.org/uea-develops...

UEA develops blood test for ME/CFS with 96% accuracy

A blood test from UEA can diagnose ME/CFS with 96% accuracy, offering hope for patients and new insights into chronic fatigue syndrome

www.openaccessgovernment.org

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Reposted by Wilhelmina Jenkins

#MEAction Network @meactnet.bsky.social · 5d

@meactnet.bsky.social's Executive Director, Laurie Jones, wrote a op-ed about the medicaid work requirements that was recently published in MedPage Today!

Thank a look below!👇

MedPage Today @medpagetoday.com · 6d

"There is nothing beautiful about shifting the burden onto those least able to bear it. But this is precisely what our nation is now poised to do."

ME/CFS and long COVID advocate Laurie Jones writes on Medicaid work requirements. https://www.medpagetoday.com/opinion/second-opinions/117839?trw=no

Opinion | Medicaid Work Requirements Will Devastate People With Invisible Disabilities

ME/CFS and long COVID patients must qualify as 'medically frail'

www.medpagetoday.com

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 6d

Sorry - autocorrect made a mistake! Laurie is, of course, executive director of @meactnet.bsky.social .

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 6d

An excellent article by Laurie Jones, executive director of @meaction-mi.bsky.social, about the difficulties that proposed Medicaid work requirements would cause the ME/CFS community.

MedPage Today @medpagetoday.com · 6d

"There is nothing beautiful about shifting the burden onto those least able to bear it. But this is precisely what our nation is now poised to do."

ME/CFS and long COVID advocate Laurie Jones writes on Medicaid work requirements. https://www.medpagetoday.com/opinion/second-opinions/117839?trw=no

Opinion | Medicaid Work Requirements Will Devastate People With Invisible Disabilities

ME/CFS and long COVID patients must qualify as 'medically frail'

www.medpagetoday.com

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Reposted by Wilhelmina Jenkins

Danielle Beckman @daniellebeckman.bsky.social · 6d

Join us at the Canadian Collaborative Conference on #ME, 100% free and online!
Register here: icancme.ca/research/202...
#MyalgicEncephalomyelitis #MECFS #LongCovid

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Reposted by Wilhelmina Jenkins

Bateman Horne Center @batemanhornecenter.bsky.social · 6d

“If everyday tasks like standing in line or taking a shower leave you dizzy, exhausted, or foggy, you’re not alone.”
— Melanie Hoppers, MD

OI & #POTS is common in #MECFS & #LongCOVID. Learn signs + management tips: https://bit.ly/4eLc3eY

#POTSAwarenessMonth #UnitedForME

Woman leaning against a wall with her hand on her forehead, appearing fatigued. Text reads: "Living with Orthostatic Intolerance (OI)."

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Reposted by Wilhelmina Jenkins

ME/CFS Science @mecfsskeptic.bsky.social · 6d

1) There's a new ME/CFS study that is getting a lot of attention in the media. It focuses on epigenetics: how genes are switched on or off by folding DNA in a different way.

You genetic code itself is fixed but the expression of genes can change by environmental factors.

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 7d

I just signed up for a free account. Very straightforward.

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Reposted by Wilhelmina Jenkins

Stephanie Grach M.D. M.S. @grachstephanie.bsky.social · 7d

Truly honored to have lead the inaugural chapter on #MECFS management in the @elsevierconnect.bsky.social textbook Scientific Basis of Fatigue, "Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A New Narrative." The greatest honor of all was co-authoring with my role models--

Dr. Stephanie Grach, a Caucasian woman with brown eyes and (currently) shoulder-length brown hair, holding a textbook open to the mentioned chapter's first page. Wearing a blue suit jacket, red/blue shirt, and blue KN95 mask, against a purple-gray background.

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 8d

Hoping for a good outcome!

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Reposted by Wilhelmina Jenkins

Tom Kindlon @tomkindlon.bsky.social · 9d

The #NotJustFatigue group has posted a recording of their September 25 livestream event.

www.notjustfatiguelivestream.org

#MEcfs #CFS #PwME

#NOTJUSTFATIGUE LIVESTREAM
Thursday, September 25 3:00-3:30 PM ET
SUFFERING IN SILENCE: THE URGENT CASE FOR CONGRESSIONAL ACTION ON ME/CFS

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Reposted by Wilhelmina Jenkins

Tom Kindlon @tomkindlon.bsky.social · 9d

DePaul University Research is conducting an online survey focused on PEM (Post-Exertional Malaise). Patients who experience PEM, as well as members of the general population, are invited to take part. The survey takes about 10-15 minutes to complete.

www.dsqpem2.com

#MEcfs #CFS #PwME #PEM

DSQ-PEM 2 Survey - DePaul University

www.dsqpem2.com

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Reposted by Wilhelmina Jenkins

Science for ME online forum @scienceforme.bsky.social · 9d

Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Sep 29-Oct 5.

Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research

www.s4me.info/threads/news...

News in Brief - October 2025

This thread has a Science for ME 'News in Brief' post for each week in October 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.

www.s4me.info

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Reposted by Wilhelmina Jenkins

ME/CFS Science @mecfsskeptic.bsky.social · 10d

1) We’ve written an article about the DecodeME results: what the study measured, what the results show, and why its findings are important.

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