From an #MEAction email:

A free, 30-minute, modified movement class (virtual) will be held on Thursday, Feb. 8.
#MEAction said:
#MEAction is thrilled, once again, to partner with Shannon Williams-Bramburger of Nourish Therapeutic Yoga to provide a 30 minute, virtual, very modified movement class on Thursday, Feb 8th at 11am PT / 2pm ET / 7pm BST that has been crafted specifically for people with ME.

The whole class will be lying down and can be done from bed.

What to expect in this 30 minute class:
* 5-10 min. Breathing Exercises & Grounding
* 10-15 min. Gentle Movement with Breath
* 10 min. Guided Relaxation Meditation

Details here:

https://www.meaction.net/event/meaction-is-offering-a-very-modified-movement-class/

Registration link:

https://momence.com/Nourish-Therapeutic-Yoga/#MEACTION:-FREE-Community-Yoga-Class-/98822140
 
Valentine’s Day Interview with Jamison Hill & Book Promotion

https://www.meaction.net/2024/02/09/valentines-day-interview-with-jamison-hill-book-promotion/
MEAction said:
We are excited to bring you a special Valentine’s Day promotion of Jamison Hill’s most recent book, Something’s Wrong with Micah.

#MEAction had the pleasure of having a Twitter chat with Jamison when his memoir When Force Meets Fate came out. We now get to bring this Q&A about his newest book to you.

Jamison has also generously decided to donate $1 for each book sold during the week of Valentine’s Day (Feb. 11- 18) to #MEAction!
Thank you, Jamison!

A book description, author Q & A, and author bio can be found at the link above.
 
#MEAction’s Volunteer Program Revamped

https://www.meaction.net/2024/02/08/meactions-volunteer-program-revamped/
(some line breaks added)
MEAction said:
Our new volunteer program allows you to be put into a working group that uses your skills. Currently, we are offering working groups that focus on the following areas:
  • Canary Corps
  • Facebook moderator (training is offered)
  • Fundraiser
  • Podcast liaison
  • Press outreach
  • Volunteer social hour (biweekly volunteer social hour group that helps you become an advocate for yourself and others.)
Our volunteer program is designed to have separate working groups to ensure your skills are being put to good use. #MEAction fully understands the nature of ME and Long COVID, so our aim is to make our volunteer program accessible to everyone.

We recognize and know that life happens. Nothing is permanent. While volunteering with us, it is completely fine to change groups or take a break from volunteering.

MEAction said:
If you are interested in volunteering in any of these areas here is the process:

1. Fill out the Volunteer Application (12 simple questions)

2. Quick & informal interview with me (Shalida Dobbins) – opportunity for you to share your skills and interests

3. Choose your working group (you can take your time to making a decision)

4. Introduced to staff member & Invited to Volunteer Social Hour
 
#MEAction Partner Caregivers Support Call

Sunday, March 3, 12 PM Pacific / 3 PM Eastern

https://www.meaction.net/event/me-partner-caregivers-support-group/2024-03-03/

Find the time in your time zone here:
https://www.timeanddate.com/worldcl...ers+Support+Group&iso=20240303T12&p1=137&ah=1

MEAction said:
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, and support each other.

We strive to provide an affirming, safe place to share for all people regardless of sexual orientation and gender identity. While we focus on partner caregivers, all caregivers are welcome to join for extra support.

We meet every first Sunday of the month.
 
From the above
ME Action said:
NIH spent $8M to gather data from seventeen subjects, chosen in a way that may bias their conclusions—and they structured those conclusions around a core of psychosomatic reasoning. One immediate way to take action is by working on the ME/CFS Research Roadmap research priorities. The public comment period closes on March 8th.

How NIH acts on this community input will matter even more in the light of this recent paper.
 
I want to contribute something, I just don't know what to say. Research is not a "look for that" thing. It's a process, arduous and requiring a lot of insight and creative thinking. "Do your job" is also not something that makes sense as a research priority. Neither is "do better".

What is there even to say? In a way that is a research priority? "Stop dicking around?" I don't know how to put into words that make sense given the demand.
 
#MEAction published this piece on Feb. 26
(context: February is Black History Month in the USA)

Black ME Voices: Q&A with Teona Studemire

https://www.meaction.net/2024/02/26/black-me-voices-qa-with-teona-studemire/
With it being Black History Month, it was crucial to me to make sure we spotlighted someone from the ME/CFS and Long COVID community who is Black.

Being Black and disabled is an entirely different experience. Not only do we deal with ableism, but we also deal with racism, especially medical racism.

According to the Journal of Women’s Health, “Black women continue to experience excess mortality relative to other U.S. women, including—despite overall improvements among Black women—shorter life expectancies and higher rates of maternal mortality.”
 
#NotJustFatigue – Community Member Launching A New Website Today!

https://www.meaction.net/2024/03/01/notjustfatigue-community-member-launching-a-new-website-today/
#MEAction is excited to announce community member, Elizabeth Ansell, created a new website, #NotJustFatigue, launching today, March 1, 2024!

This website was created with the hopes it will help describe ME to those who do not know anything about ME. It is a site for people to share with their family and friends.

#MEAction is listed on the website as an organization for people to support financially for ongoing research and advocacy.

Elizabeth provided us with a short interview, so you can learn a little bit about her and this new site! Enjoy below!
 
The #MEAction Network

Our 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, and support each other. Our next virtual meeting is this Sunday, March 3rd at 12 pm PT/ 3pm ET/ 8 pm GMT. https://www.meaction.net/event/me-partner-caregivers-support-group/2024-03-03

If you would like to be added to our email list and receive meeting info and updates, please email kim.mecfs@gmail.com.

#pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #caregiver #partner #SupportGroup ID: Graphic of people joining together on a virtual call. One person sits on a couch with headphones on and a laptop in their lap holding a mug. Behind them is a large screen showing 4 others on video in a video call. Text above: #MEAction Partner Caregiver Support Call Text below: 1st Sunday of every month 12 pm PT/ 3 pm ET

 
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Message from #MEAction, for folks in the USA:

Home Test To Treat: Access Free Home Telehealth for Flu & COVID-19 Infections

https://www.meaction.net/2024/03/07...e-telehealth-for-flu-and-covid-19-infections/
#MEaction said:
#MEAction and Body Politic* are excited to collaborate with Home Test To Treat to share their critically important resource!

Acute COVID-19 treatment and testing is unfortunately becoming harder and harder to access with the U.S. government public health emergency having been declared ended. The Home Test To Treat pilot program is a way to fill that gap in an accessible and equitable way.
...
What is Home Test to Treat?

Home Test to Treat is a fully HIPAA compliant (national) free public health pilot program providing free Covid and flu tests, telehealth, and treatment via test2treat.org. Those who enroll can receive free services including: COVID-19/Flu tests (if eligible), telehealth visits, and treatment (if prescribed). If you are currently positive for COVID-19 or Flu, you can enroll to receive telehealth services and treatment (if prescribed), all at no cost to you.

If you are not currently positive for COVID-19 or Flu, you can enroll to additionally receive free tests (if eligible), and later telemedicine services to use if you become sick with COVID-19 or Flu. Treatment can be shipped to you or picked up at a local pharmacy* at no cost for those eligible. *Dispensing fees may apply for local pharmacy pickup.

Individuals who are uninsured, enrolled in Medicare, Medicaid, IHS, or VA Healthcare can sign up today and receive free at-home COVID19/flu tests even if they are not currently positive.
#MEAction said:
Is the program really free?

Yes! The program is fully supported by the NIH RADx® Tech program and ASPR. Identification isn’t required nor will a payment method of any kind be asked for. For those who choose local pickup, dispensing fees at your local pharmacy may apply.

Register for the Home Test to Treat program here:

https://www.test2treat.org/s/?language=en_US

On a personal note, I signed up for this program myself (I'm on Medicare). Sign up was easy. And then I requested some free tests. They sent me two Lucira brand tests - they test for COVID as well as Influenza A/B.

The bad news was that the tests they sent me had a fairly close expiration date (only 5 weeks after I received the tests).

Fortunately, I had a use for them (I had an in person meeting with friends) so I used them instead of the other pair of tests that I had on hand. But I wanted to let others know so they won't try to stock up on tests that may be expiring quickly.

Home Test to Treat sleeve with Lucira Covid Flu test box- small.jpg
 
#MEAction has new shirt designs for Millions Missing 2024.

One design has the new "Teach M.E., Treat M.E." slogan (about their medical education program) while the other one says Millions Missing 2024.

Both are available in a range of different styles and colors

Link to email from MEAction:

https://mailchi.mp/meaction/millionsmissing-2024-new-t-shirts-available

Link to bonfire site where you can buy shirts:

https://www.bonfire.com/store/meaction-1/

They recommend ordering by April 1 if you want to be sure your shirt will arrive by May 12.

EDIT: Adding the link to the "Show Up from Home Toolkit" (Google doc) for those who want to start thinking now about what they might do for Millions Missing 2024.

https://docs.google.com/document/d/1gV0Gxh00KpH5eM_gvYLO8VzeSi-XqEBwLM3uxn18E04
 
Merged thread

TIME100 Health - Jaime Seltzer - Postviral patient advocate


Jamie Seltzer is among the hundred most influential people in health in 2024, according to the Times.

Congratulations!!

From the presentation:

For years, U.S. medical schools barely taught their students about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a chronic condition that affects up to 2.5 million people in the U.S., which can develop after routine viral illnesses and causes debilitating exhaustion. Jaime Seltzer—a trained scientist who developed ME/CFS in 2014 and now works as the scientific director for the advocacy group #MEAction—is working to change that.


https://time.com/6967257/jaime-seltzer/
 
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#MEAction’s Jaime Seltzer Selected for TIME100 Health 2024

https://www.meaction.net/2024/05/02/meactions-jaime-seltzer-selected-for-time100-health-2024/
(line breaks added)
MEAction website said:
We are thrilled to share with you that Jaime Seltzer, #MEAction’s Scientific Director, has been selected for TIME100 Health 2024, TIME’s new annual list of 100 individuals who most influenced global health this year!

This is a huge honor based on years of work fighting for equity for people with ME.
...

Brief Overview of Jaime’s Accomplishments
Jaime contracted ME in 2014 and, like many, struggled to get a diagnosis. Despite having a family history of ME, she still sought care in multiple hospital systems before her first episode of PEM led her to the ME community, and an expert clinician.

She then became one of #MEAction’s first hires as Managing Editor, and helped plan the first MillionsMissing protests.

Jaime then worked at the Stanford Genome Technology Center (SGTC) at Stanford University under Dr. Ron Davis, whose son, Whitney, has severe ME.

Then, she returned to #MEAction in the position of Director of Scientific and Medical Outreach, now Scientific Director.

Jaime has created and spearheaded multiple research and medical education initiatives, including the Unrest CME, the Postcards to Doctors initiative, the Research Review, the Chronic Illness Survey Adventure, the work with Mayo Clinic Rochester clinicians funded by the Society to Improve Diagnosis in Medicine, and has managed relationships with institutions engaging in more in-depth partnerships during this year’s #TeachMETreatME initiative for #MillionsMissing.

More details and links on the website for those who are interested.

Folks who have read this Mayo Clinic Proceedings document might recognize her name - she's listed as one of the authors:

Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

EDIT: Here's the link that goes directly to the Time100 profile for Jaime Seltzer:

https://time.com/6967257/jaime-seltzer/
 
This is so fantastic! Recently ME advocate Joan McParland was awarded an MBE for services to people with ME and their carers, and now our @JaimeS is in the Time 100 Most Influential health bods for advocacy for post-viral patients. Such acknowledgement of ME would have been unthinkable until now. Huge congratulations!
 
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