USA: News from #MEAction

Posted on the #MEAction website on July 22:

#MEAction’s Pacing Narrative Data Gets Published in First Paper + MORE Science updates!
#MEAction said:
We are excited to share some promising updates about the scientific work #MEAction is leading to advance the field of ME/CFS research.

Our Scientific Director, Jaime Seltzer, is in the process of coordinating analysis for three major studies, including our massive symptoms survey and pacing survey, drawn directly from the patient experience. Jaime is also working hard on a third big data study, which has to remain under wraps for now, but stay tuned!

We know that patient experience is the foundation for good research. That is why our research is focused on delving deep into patient symptoms to uncover patterns and extrapolate knowledge that can help guide the search for effective treatments.
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Link to study that uses data from the Pacing Narrative Survey:

A Signal for Voice and Speech Abnormalities in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
 
Email from Laurie Jones, Executive Director for #MEAction:

Celebrating A Big Senate Win
#MEAction said:
#MEAction has been working hard with #NotJustFatigue to advocate for the ME/CFS Research Roadmap and it has paid off!

The Senate Appropriations Committee included the roadmap in their report!

This is a big step in the right direction. Everyone’s advocacy, including the work of #NotJustFatigue and Solve M.E. have led to this step. I am beyond grateful for our 1:1 meetings with senators, our #MillionsMissing events, the ME/CFS Research Roadmap letter sign-ons, and everything everyone has done to make this moment possible.

Read an excerpt of the report below:

Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome [ME/CFS] Research Roadmap. - The Committee recognizes the urgent need to advance research for ME/CFS, especially given its overlap with Long COVID and relevance across multiple ICs and commends NIH for approving the ME/CFS Research Roadmap. The Committee encourages NIH to implement the roadmap's recommendations, including advancing biomarker discovery, diagnostic tool development, and clinical trials. NIH is further directed to provide a detailed implementation plan to the Committee within 180 days of enactment.
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The proposal still has to pass the full senate and house but it's good news.

EDIT: This same news has also been posted on their main website (link above goes to a newsletter distributed via email):

Celebrating A Big Senate Win
 
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From their Facebook page:

RECOVER TLC clinical trials should include subgroup tracking and analysis for ME/CFS (using IOM criteria), POTS & other forms of dysautonomia, and MCAS.

#MEAction, Solve MECFS Initiative, Open Medicine Foundation, Bateman Horne Center, Renegade Research , Massachusetts ME / CFS & FM Association, Simmaron Research, Complex Disorders Alliance (CODA), and CORe Community, Inc. (COVID Recovery through Community) all signed on to a letter sent to RECOVER TLC leadership.

Letter: https://ow.ly/3K5G50WU60J

#LongCovid #pwME #NIH #RECOVERTLC #Dysautonomia
 
An update from #MEAction on a new home help program in Minnesota :

Advocacy Works: Fighting for ME/CFS and Long COVID in Minnesota
For years, people in Minnesota with ME/CFS and Long COVID have been left without the resources they need to live with dignity. This has never been acceptable — and it’s why our community has fought so hard to change it.

The launch of the Minnesota Home Help Navigation Program is proof that advocacy works. This new program, funded by the Minnesota Department of Health, will help people with energy-limiting illness get the home and community-based services they need. It should be the beginning, not the end, of our state’s investment in these communities.

As someone who has worked in HIV advocacy for decades, I’ve seen firsthand how dedicated funding and support change lives. People living with ME/CFS and Long COVID deserve the same commitment that the Ryan White CARE Act made to people living with HIV. We need programs that help people stay in their homes, fill in the gaps in medical care, and live their lives — and we need them now.
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Another article from #MEAction about the latest anthology from the Pillow Writers group:

NOW AVAILABLE: Near- Life Experiences: The Pillow Writers Anthology, Issue 2
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#MEAction said:
What will you find in Near-Life Experiences, Issue 2?

Included in this issue are 56 poems, stories, and essays by Pillow Writers.

New to this issue are two additional pieces, essays by family members of Pillow Writers. They agreed to reflect on their experiences living with a family member with ME/CFS/Long COVID.

Gloria wrote about her daughter (Pillow Writer Manu) moving back home, and Pillow Writer Jenny’s son wrote about having a mother with ME/CFS.

Also, in this issue are photos of each author so readers can see who the Pillow Writers are.

Take a few minutes to read through the Contributor’s Notes and appreciate the breadth of this group of writers—the countries where they live, the careers they once had, and their current circumstances. Enjoy the broad cross section of talent and world views that come together in this issue.

The insights and experiences expressed in these writings highlight a world that might be specific to the author, and to the ME/CFS/Long COVID community. But these writers are also revealing a world many can relate to, anyone who might feel isolated, disillusioned or faced with adversity.

How do any of us find new ways of seeing and attending to life when in life-altering circumstances? Take a look inside Issue 2 to discover how these authors investigate and come to terms with their lives.

Some of the Pillow Writers have been chronically ill for more than 40 years.

This often-invisible community has been shamed and marginalized for decades; the medical community has ignored the millions who are suffering.

This anthology is proof of their voices speaking clearly, authentically, and with vision. Here, they present their lives to the public for all to see.
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The article (rather long) includes comments from some of the authors.

It also includes links to Amazon to purchase this anthology, either as an ebook or a paperback.
 
Upcoming online event:

Grief is Love - Book Reading and Q&A

Thursday, October 9
3-4 pm ET (Eastern Time
Discussion and Q&A with Marisa Renee Lee, author of Grief is Love

#MEAction said:
Author Marisa Renee Lee the celebrated author of Grief Is Love: Living With Loss will talk to our community about how grief plays a role in not just living but thriving through hard times. There will be a book reading and a Q&A.

You can purchase a copy of her book here: https://www.marisareneelee.com/writing
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Register here to receive Zoom link: https://us06web.zoom.us/meeting/register/VGbv5NQESQ-o7bJcDvRlQg
 
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