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Reposted by Wilhelmina Jenkins

Neurologist Mom @neurologistmom.bsky.social · 1d

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 · 1d

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 · 1d

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 · 1d

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 · 1d

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 · 2d

So great!!

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Reposted by Wilhelmina Jenkins

It's ME(Jaime) @exceedhergrasp1.bsky.social · 2d

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 · 3d

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 · 2d

@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 · 3d

"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 · 3d

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

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 3d

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 · 3d

"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 · 3d

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 · 3d

“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 · 3d

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 · 4d

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 · 4d

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 · 6d

Hoping for a good outcome!

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Reposted by Wilhelmina Jenkins

Tom Kindlon @tomkindlon.bsky.social · 6d

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 · 6d

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 · 6d

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 · 7d

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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Wilhelmina Jenkins @wilhelminaj.bsky.social · 8d

Clearly my problem is that I’m missing out on the chocolate.

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Reposted by Wilhelmina Jenkins

#MEAction Network @meactnet.bsky.social · 8d

We know that there are a lot of protests happening. Stay safe everyone! We have a protest guide available! www.meaction.net/_files/ugd/b...

It includes planning an accessible protest & attending an in person protest when you have ME or similar.

#pwME #Protest #MECFS #ChronicIllness

Photo from #MEAction Still Sick Still Fighting protest in front of the White House showing protesters lying on the sidewalk. Text above: MEAction protest guide available. Text below: Part 1: For people who are planning a protest/activism to include people with ME Part 2: For those planning to attend an in-person protest that have complex chronic illness

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Reposted by Wilhelmina Jenkins

ME/CFS Science @mecfsskeptic.bsky.social · 8d

1) 🇳🇴 Ola Didrik Saugstad and his colleagues report about the first specialised care unit for severely and very severely affected ME/CFS patients.

It opened in 2021 in Norway. The authors report the results from the first 3 years.

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Reposted by Wilhelmina Jenkins

#MEAction Network @meactnet.bsky.social · 9d

Our Partner Caregiver Support call is coming up Sunday- Oct. 5 at 3 pm ET. All caregivers of #pwME #pwLC are welcome to attend. This month focuses on somatic practices to reduce stress.
www.meaction.net/event-detail...

#caregiver #carer #Support

#MEAction Partner Caregiver Support Call | #MEAction

The Partner Caregivers Support Group invites caregivers who are spouses, partners, or significant others of people with ME/CFS or Long COVID (and associated conditions) to join us to connect, share, a...

www.meaction.net

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Reposted by Wilhelmina Jenkins

Billy Hanlon @bhanlon15.bsky.social · 9d

Discover Magazine: 'Newly Identified Biomarkers Could Help Diagnose Chronic Fatigue Syndrome'

"ME/CFS affects a lot of different parts of the body...analyzing plasma gives you access to what's going on in those different parts." - Maureen Hanson

www.discovermagazine.com/newly-identi...

Newly Identified Biomarkers Could Help Diagnose Chronic Fatigue Syndrome

Learn more about the tests researchers are developing with machine learning tools that could be key in diagnosing chronic fatigue syndrome.

www.discovermagazine.com

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Reposted by Wilhelmina Jenkins

#MEAction Network @meactnet.bsky.social · 9d

PLEASE NOTE: We have moved this event to October 28 at 3 pm ET!

Join us for a virtual workshop- Dealing with Grief and Chronic Illness with Marisa Renee Lee. Register: ow.ly/ob5r50X5j5A

If need free ticket: forms.gle/rQYxuXUxddhs...

#pwME #MECFS #LongCovid #Spoonie

Graphic with details available in the post. Text against a purple backdrop. Bright star with text: New Date. Photo of the book Grief is Love at top of graphic. Text beneath: Dealing with Grief and Chronic Illness A workshop with Marisa Renee Lee Tuesday October 28th at 12 pm PT/ 3 pm ET. Tickets available for a suggested donation.

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