Wilhelmina Jenkins

It was. We adjust to missing so much, but sometimes it feels almost unbearable.

Missing my only sister’s memorial service was a big one for me.

Webinar recording promotional graphic titled “The Unified Platform: Advancing Research Across ME/CFS, Long Covid, and Other Chronic Conditions.” Featured speakers with headshots: Megan L. Fitzgerald, PhD, Principal Investigator & Lived Experience Expert; Christy Jagdfeld, Co-founder and CEO of Brain Inflammation Collaborative; Chris Nowak, Platform Architect & Caregiver to a Person with ME/CFS, CareEvolution; and Emily Taylor, President of Solve M.E. Logos for Solve M.E., Unhide, Solve Together, and Brain Inflammation Collaborative are at the bottom.

Watch the replay of our webinar on the unhide® Solve Together Unified Platform! Panelists from the Brain Inflammation Collaborative discuss the secure platform allowing patients to contribute data to support research across 30+ conditions.
youtu.be/Yssihztzw_w

Visit unhidenow.org to enroll.

Graphic with photo of author Marisa Renee Lee (a Black woman with a great big smile looking at the camera) and her book (title Grief is Love with purple/blue/pink/gold floral swirls) Text: Dealing with Grief and Chronic Illness Workshop Tuesday October 28th 3 pm ET Get your ticket today! Marisa Renee Lee author of Grief is Love.

Grief and complex chronic illness often go hand in hand. Join us on October 28th at 12 pm PT/ 3 pm ET/ 7 pm GMT for a virtual workshop with Marisa Renee Lee focusing on this important topic. www.meaction.net/event-detail...

#pwME #grief #ChronicIllness #MECFS #Spoonie #LongCovid

Join our Cloud HD Video Meeting Zoom is the leader in modern enterprise cloud communications.

Wanna to go to a virtual No Kings rally that focuses on healthcare (with a side of "vaccines are good, actually" and "eugenics is bad, actually")?

Organized by disabled folks who can't go to an in-person event.

Join Saturday at 2:30pm Pacific time, zoom link: us06web.zoom.us/j/8467741742...

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...

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

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.

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).

2025 ME Conference - ICanCME

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...

Apply Today - Writers Guild Initiative Writing Workshops WGI Workshops start in November. Apply today!

#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...

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

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.

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

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

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 🧵

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

So great!!

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. 🧪

@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!👇

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

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.

Canadian Collaborative Conference on ME

List of speakers on the first day.

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

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

“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

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.

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

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.

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--

Hoping for a good outcome!

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

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

www.notjustfatiguelivestream.org

#MEcfs #CFS #PwME

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

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...

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