Wilhelmina Jenkins
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wilhelminaj.bsky.social
Wilhelmina Jenkins
@wilhelminaj.bsky.social
2.8K followers 1.7K following 830 posts
Living with ME/CFS since 1983. An advocate since my diagnosis in 1988.
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Reposted by Wilhelmina Jenkins
meactnet.bsky.social
In need if some pre-holiday, restorative self-care? Need it to be crafted specifically for #pwME?

We invite you to join an EXTREMELY modified movement class Dec. 12th at 11 am PT/2 pm ET/7 pm GMT.

Register: ow.ly/sHNr50XCebh

This virtual class is free to attend.

#spoonie
blue background, with white snowflakes, trees, and dots around the sides. The words, Modified Movement Class. Friday, December 12th @ 11am PT/2pm PT/7pm GMT. MEaction and Nourish Yoga Logos at the bottom
December 5, 2025 at 7:08 PM
Reposted by Wilhelmina Jenkins
mecfsskeptic.bsky.social
1) 🧬 New results from the LOCOME project. It applied the combinatorial analytics of PrecisionLife on data from DecodeME.

The 259 genes that were most associated with ME/CFS pointed to "neurological dysregulation, inflammation, cellular stress responses, and calcium signaling"
December 5, 2025 at 8:45 AM
Reposted by Wilhelmina Jenkins
bhanlon15.bsky.social
Experts Urge Long COVID Study of Historical Illnesses

In a paper publishing in the Cell Press journal..on December 4, scientists & doctors highlight the importance of studying long COVID in the context of other post-acute infection syndromes or chronic illnesses

www.miragenews.com/experts-urge...
Experts Urge Long COVID Study of Historical Illnesses
In a paper publishing in the Cell Press journal Trends in Immunology on December 4, scientists and doctors highlight the importance of studying long
www.miragenews.com
December 4, 2025 at 4:58 PM
Reposted by Wilhelmina Jenkins
meactnet.bsky.social
Feeling extra pressure to push yourself past your limit? Wondering how to explain those limits to those around you? Wanting to join in the seasonal joy but not sure how to make it a SAFE reality for you? We've got you! www.meaction.net/post/facets-...

#holidays #spoonie #pwME #spoonie
Evergreen bough on each side of green text on cream background. Text at top: Tips for the holidays for people with M.E. Text in center: Categories: Baking Communication Grief Home Care Infectious Illness Loneliness Traditions Travel
December 4, 2025 at 11:51 PM
Reposted by Wilhelmina Jenkins
meactnet.bsky.social
We’re discussing Grief, Stress, and Connection During the Holidays at the #MEAction Partner Caregiver support group meeting this Sunday, Dec. 7, from 12–1 p.m. PST / 3–4 p.m. EST / 8–9 p.m.

All caregivers are welcome to join

www.meaction.net/event-detail...
#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
December 3, 2025 at 10:02 PM
Reposted by Wilhelmina Jenkins
meactnet.bsky.social
Today is Giving Tuesday! All Donations tripled!

We simply cannot continue without your support. We need your help to raise $150,000 by Dec. 31, or #MEAction will not be able to do the work we do.

Donate now and be a lantern for all of us! meaction.net/donate
Redish stripped rectangle with a picture of hand loading a lantern above city lights. the words Giving Tuesday, Donate Now, be a lantern for all of us! All donations 3x matched. Meaction logo in top right corner
December 2, 2025 at 9:06 PM
Reposted by Wilhelmina Jenkins
meactnet.bsky.social
#MEAction has a 3X Matching opportunity for this #GivingTuesday - all donations will be TRIPLED today! www.meaction.net/donate

We simply cannot continue without your support. Help us continue to be a lantern in the darkness. We need your help to raise $150,000 by December 31st.

Thank you!
December 2, 2025 at 1:33 PM
Reposted by Wilhelmina Jenkins
mecfsskeptic.bsky.social
1) No new research papers today, so we wanted to share some info from the big PAIS protest in the Netherlands on Sunday. It had a big turnout and reached the national press.
December 2, 2025 at 9:39 AM
Reposted by Wilhelmina Jenkins
scienceforme.bsky.social
Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Nov. 24 - 30.

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

www.s4me.info/threads/news...
News in Brief - November 2025
This thread has a Science for ME 'News in Brief' post for each week in November 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
November 30, 2025 at 11:17 PM
Reposted by Wilhelmina Jenkins
mecfsskeptic.bsky.social
1) Dr. Michael Peluso will lead a big ME/CFS project called CHIME.

The infrastructure first built for HIV, then used for Long Covid in the LIINC study, will now also help with studying pre-pandemic ME/CFS

The research will focus on gut biopsies and PET-CT scans.
November 27, 2025 at 9:37 AM
wilhelminaj.bsky.social
Another excellent article from @miriametucker.bsky.social covering the panel on disability at the International Association of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) 2025 virtual meeting. Very helpful insights.
November 27, 2025 at 12:21 AM
Reposted by Wilhelmina Jenkins
batemanhornecenter.bsky.social
When a loved one with #MECFS or #LongCOVID experiences a crash, knowing how to respond matters. 💙 Our Caregiver Guidance resource offers practical steps for safe, compassionate support during post-exertional malaise (PEM).

Read it now: https://bit.ly/44ZtO4R
#UnitedForME
November 25, 2025 at 7:16 PM
Reposted by Wilhelmina Jenkins
meactnet.bsky.social
To celebrate Family Caregivers Month, we’re unveiling brand-new shirts, sweatshirts, & mugs — created by caregivers for our community!

Our community came together — caregivers, volunteers, designers, friends — to create these items! Find them here: www.bonfire.com/store/meacti...

#InvisibleIllness
6 shirts and 2 mugs all with a design that says Invisible illness Visible Love. It has a heart and an outline of a heart connecting the two phrases. The #MEaction logo is in the corner. Tops clockwise starting in top left corner: Gray sweatshirt, purple tee, red hoodie, white mug with red handle, mauve shirt, teal shirt, red shirt, and mug with black handle.
November 25, 2025 at 7:12 PM
Reposted by Wilhelmina Jenkins
meactnet.bsky.social
Light Up A Lantern!

Everyone who gives $50+ to #MEAction fundraiser will have the ability to list a name on a lantern. You may light up a lantern in honor or in memory of someone else.

And, your donation will be DOUBLED thanks to a matching donation!
www.meaction.net/donate
black square with gold frame. Gold glitter splash on the background. The words in cream, Light up a lantern. Image of a lantern in the center
November 25, 2025 at 6:43 PM
Reposted by Wilhelmina Jenkins
meactnet.bsky.social
The majority of Long COVID research investigating exercise benefits completely ignores post-exertional malaise (PEM) - one of the core symptoms of #LongCOVID.

An analysis by @thesicktimes.org showed that less than 20% of Long COVID trials involving exercise even mention PEM.
A image showing the name of the publication at the top, The Sick Times, and then a subhead that reads: "Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise." And then a image of a woman bent over on her bed with her hair flowing onto the ground - everything is blue. At the bottom of the image, it reads: "In the Press. #MEAction Explains the Harms of GET for Long COVID.
November 24, 2025 at 10:12 PM
Reposted by Wilhelmina Jenkins
scienceforme.bsky.social
Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Nov. 17 - 23.

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

www.s4me.info/threads/news...
News in Brief - November 2025
This thread has a Science for ME 'News in Brief' post for each week in November 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
November 24, 2025 at 12:02 AM
Reposted by Wilhelmina Jenkins
mecfsskeptic.bsky.social
1) Quite impressive that PolyBio (@polybioRF) has raised $42 million since 2021 with very little overhead.

While we have doubts about their strong focus on viral persistence, their studies on brain scans and tissue samples look very interesting. 🧵
November 23, 2025 at 2:00 PM
Reposted by Wilhelmina Jenkins
meactnet.bsky.social
This is today!
meactnet.bsky.social #MEAction Network @meactnet.bsky.social · 16d
Our workshop "Chronic Illness Caregiving for Youth, Teen, and Adult Children" with Denise Lopez-Majano is this Saturday - November 22nd at 3 pm ET! Get your ticket now: ow.ly/3IcV50XlbZh

All caregivers welcome! New to caregiving or a veteran at it, there is something for you!

#caregiver
Information about upcoming workshop with photo of facilitator Denise Lopez-Majano (fair-skinned woman with medium-length graying hair wearing glasses and smiling). Text: New virtual workshop. Chronic Illness Caregiving for Youth, Teen, and Adult Children with Denise Lopez-Majano. Saturday November 22 3 pm ET
November 22, 2025 at 5:03 PM
wilhelminaj.bsky.social
Don’t miss this informative workshop today!

My daughter became ill with ME/CFS back in high school. I can’t express how important a workshop like this would have been for me as my family faced so many decisions about supporting her through this life-crushing illness.

Caregivers - join in today!
meactnet.bsky.social #MEAction Network @meactnet.bsky.social · 16d
Our workshop "Chronic Illness Caregiving for Youth, Teen, and Adult Children" with Denise Lopez-Majano is this Saturday - November 22nd at 3 pm ET! Get your ticket now: ow.ly/3IcV50XlbZh

All caregivers welcome! New to caregiving or a veteran at it, there is something for you!

#caregiver
Information about upcoming workshop with photo of facilitator Denise Lopez-Majano (fair-skinned woman with medium-length graying hair wearing glasses and smiling). Text: New virtual workshop. Chronic Illness Caregiving for Youth, Teen, and Adult Children with Denise Lopez-Majano. Saturday November 22 3 pm ET
November 22, 2025 at 4:23 PM
Reposted by Wilhelmina Jenkins
mecfsskeptic.bsky.social
1) New sociology paper on severe ME/CFS. The authors analyzed 342 messages on Twitter/X to get insights into the daily reality of people with severe ME/CFS.

They highlight the feeling of being trapped by the illness, profound isolation and longing for the outside world.

November 22, 2025 at 8:39 AM
Reposted by Wilhelmina Jenkins
meactnet.bsky.social
Clinical trials are under attack from the Trump administration.

@washingtonpost.com reported on a new JAMA paper that shows grants for 383 clinical trials were terminated from the end of February to August, affecting more than 74,000 trial participants.

@allysonchiu.bsky.social
Screenshot of Washington Post article with title and subtitle: "Trump slashed spending Trump slashed spending on clinical trials. The toll is starting to become clear. Grants for 383 clinical trials were terminated and the funding disruptions affected more than 74,000 trial participants, according to new research." Underneath is a stock photo of a microscope. Text above screenshot: #MEAction’s Scientific Director responds to the JAMA paper discussed in Washington Post article.
November 21, 2025 at 7:13 PM
Reposted by Wilhelmina Jenkins
exceedhergrasp1.bsky.social
The rationale behind these studies, Seltzer contests, is [that] “it presumes that the patient had never heard of exercise until a doctor told them [it] exists.”

Thanks to Simon Spichak for putting this idea into print. I've said multiple times in interviews that it's the strangest part... 🧵
November 21, 2025 at 3:56 PM
Reposted by Wilhelmina Jenkins
meactnet.bsky.social
#MEAction has been working hard this year to be a lantern in the darkness. We have had some wins, moments that stood out, and times where this community made a difference. See our list: www.meaction.net/post/meactio...

We need your support. Your gift will be matched up to $50k!

#pwME #pwLC #MECFS
#MEAction's Top 10 Accomplishments of 2025
This year has been hard- we know because we have been on the ground fighting for ME and Long COVID every single day. In 2025, #MEAction has accomplished a lot. Just take a look below.1. Advocating for...
www.meaction.net
November 20, 2025 at 7:49 PM
Reposted by Wilhelmina Jenkins
meactnet.bsky.social
Our workshop "Chronic Illness Caregiving for Youth, Teen, and Adult Children" with Denise Lopez-Majano is this Saturday - November 22nd at 3 pm ET! Get your ticket now: ow.ly/3IcV50XlbZh

All caregivers welcome! New to caregiving or a veteran at it, there is something for you!

#caregiver
Information about upcoming workshop with photo of facilitator Denise Lopez-Majano (fair-skinned woman with medium-length graying hair wearing glasses and smiling). Text: New virtual workshop. Chronic Illness Caregiving for Youth, Teen, and Adult Children with Denise Lopez-Majano. Saturday November 22 3 pm ET
November 20, 2025 at 6:23 PM
Reposted by Wilhelmina Jenkins
meactnet.bsky.social
Call to action: Congress has extended Telehealth until January 31,2026.

This is NOT a permanent solution. So, we must continue to put pressure on Congress to make telehealth for Medicare permanent.

Call now using our call script: www.meaction.net/telehealth

#Telehealth #PwME #MECFS #LongCovid
Text-based graphic in red and white. Simple graphics in each corner include bullhorn, Capitol building, mobile phone, and #MEAction logo. Text: Call Congress now! Make telehealth coverage permanent! We provide a call script to use!
November 19, 2025 at 9:27 PM