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Wilhelmina Jenkins

@wilhelminaj.bsky.social

2.7K followers 1.6K following 700 posts

Living with ME/CFS since 1983. An advocate since my diagnosis in 1988.

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Wilhelmina Jenkins @wilhelminaj.bsky.social · Jun 26

My ME Action GA friends, working hard during @solveme.bsky.social’s Advocacy Week to brings critical issues concerning ME/CFS to members of Congress. Love and respect! #MEForward

Liz Burlingame @lizmeactga.bsky.social · Jun 26

Just completed a meeting with Lizzie N of Rep. Rich McCormick's office as part of @solveme.bsky.social Advocacy Week. We are counting on Congress to help support the estimated 9 million Americans suffering with #MECFS. #MEforward

Screenshot of four women attending a virtual advocacy meeting to discuss the crisis in clinical care for people with ME/CFS.

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 7h

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

Wilhelmina Jenkins @wilhelminaj.bsky.social · 10h

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 · 12h

"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 · 18h

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 · 15h

“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 · 18h

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 · 1d

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

Reposted by Wilhelmina Jenkins

Stephanie Grach M.D. M.S. @grachstephanie.bsky.social · 1d

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 · 3d

Hoping for a good outcome!

Reposted by Wilhelmina Jenkins

Tom Kindlon @tomkindlon.bsky.social · 3d

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 · 3d

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 · 3d

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 · 5d

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 · 5d

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

Reposted by Wilhelmina Jenkins

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

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 · 5d

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 · 6d

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 · 6d

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 · 6d

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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Reposted by Wilhelmina Jenkins

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

1) The Canadian ME/CFS research network ICanCME is organizing a free and online conference from 4 to 6 November.

The main presentations take place at:

1 pm - 5 pm Eastern Time
6 pm - 10 pm London Time
7 pm - 11 pm Brussels Time

#ICanCME2025

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Reposted by Wilhelmina Jenkins

#MEAction Network @meactnet.bsky.social · 7d

We know there is a lot going on in the world right now! This is your reminder to stop and take at least 3 deep breaths.

Feel the surface beneath you. Sink into it. Inhale for 4, exhale for 6. Repeat as often as needed.

#pwME #pwLC #Spoonie #SelfCare

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 7d

This is amazing!!

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Reposted by Wilhelmina Jenkins

Tom Kindlon @tomkindlon.bsky.social · 7d

Exciting to see this 🔥

Specialised care for severely affected ME/CFS patients

Free:
www.tandfonline.com/doi/full/10....

Would be great to have such facilities in countries around the world. Approach is very different from the (inappropriate/dangerous) rehab/BPS approach

#MEcfs #SevereME #PwME

ABSTRACTIntroduction: A specialised care unit for severely and very severelyill ME/CFS patients opened in 2021. The results from the first 3 yearsare reported.Methods: People with ME/CFS who were diagnosed according tothe Canadian Consensus Criteria, who are aged 18 or above withsevere or very severe ME/CFS according to the UK NICEguidelines, are eligible to stay at Røysumtunet. The study designis a retrospective review of medical records.Results: Between June 2021 and June 2024, 24 ME/CFS patients, 20women and 4 men with a confirmed diagnosis of ME, wereadmitted to the unit for stays of at least 3 months. Seventeenwere very severely affected and 7 were severely affected. Agesranged from 18 to 68 years, with mean (SD) 37.5 (12.8) years.Seven patients showed significant improvement (p < 0.01), andfive others showed some improvement. In total 50% improved (p< 0.01). Patients who improved were borderline significantlyyounger than those who did not, with a mean age of 30.3 (SD12.6) years compared to 39.8 (SD 11.8) years (p = 0.06). The meanduration of disease was 2.3 (1.3) years for those who improvedversus 6.7 (3.9) years for those who did not improve (p < 0.05).Conclusion: This is the first report of a specialised care unit for themost severely ill ME/CFS patients. Fifty per cent of patients showedsignificant or partial improvement. The mechanisms behind theseimprovements are discussed but require further exploration infuture studies.

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Reposted by Wilhelmina Jenkins

#MEAction Network @meactnet.bsky.social · 7d

Stellar new work from @grachstephanie.bsky.social, @exceedhergrasp1.bsky.social, @batemanhornecenter.bsky.social's Bell and Yellman & @raviganeshmd.bsky.social in the Elsevier text 'The Scientific Basis of Fatigue'! The book has chapters on #MECFS, COVID, Parkinson’s, stroke, and multiple sclerosis.

Text-based graphic with one photo. Text: New publication. Managing myalgic encephalomyelitis/chronic fatigue syndrome: a new narrative. a chapter in a new Elsevier textbook written by coauthors from #MEAction, Mayo Clinic Rochester and the Bateman-Horne Center. “I was honored to co-author this chapter with colleagues from Mayo Clinic and the Bateman-Horne Center to give clinicians and researchers the tools they need to better recognize, study and treat ME/CFS.”
Jaime Seltzer,
Scientific Director, #MEAction
Photo: Jaime Seltzer (white woman with long, dark hair) wearing glasses and cream blazer and red top slightly smiling.

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 7d

This is wonderful! Thank you for your consistently solid scientific work that spreads the understanding of this disease to the broader medical community.

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

Need a little distraction? Enjoy learning about a new book?

Join us for a Q&A with author and #MEAction volunteer Brian Buckbee TOMORROW - October 1st at 3 pm ET!

Register here: www.meaction.net/event-detail...

#pwME #Book #author #disability #chronicIllness #InvisibleIllness

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