Wilhelmina Jenkins

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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

#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!

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.

True, sadly enough.

Good luck.

“We have dropped our old mantra — “We’ll get our lives back” — and replaced it with, “We’re managing.”” And there we are.

Truly horrible.

I was tired of them 30 years ago, but they keep on coming.

Very cool! Thanks for posting it!

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...

Especially those who read the headlines and see validation of their own faulty beliefs.

Private funding has been crucial for ME/CFS research for decades. The best way to get a substantial grant from NIH is to show interesting results from a pilot study. Cort’s example of Younger’s success in this approach is an excellent demonstration of this.

Rest as long as you need to and then add in at least 50% more rest. Take good care.

Shameful

I have enjoyed this series so much and I’m sad to see it come to an end. Looking forward to new work by this author.

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.

I had no idea that I was badly overexerting in the year before I ended up bedbound. It was all mental effort; I didn’t leave the house because it was early in the pandemic. Looking back I could see that I had done too much, but not at the time.

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.

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

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.

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

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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!
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Excellent article.

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.

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.

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...

I just finished this book a couple of days ago, and it really was filled with ME/CFS allusions. I wondered how I would see the book differently if I didn’t have ME/CFS. A good book!

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. 🧵

True.

This is today!

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!

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.