USA: News from #MEAction

From an #MEAction email:

A free, 30-minute, modified movement class (virtual) will be held on Thursday, Feb. 8.

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

 

Saturday, February 17

CAREGIVER SUPPORT CALL (for caregivers of people with ME (myalgic encephalomyelitis), Long COVID and associated conditions)

https://www.meaction.net/event/me-caregiver-support-call/2024-02-17/

3:30pm ET/8:30 PM in Great Britain & Ireland

Find the time in your time zone here:
https://www.timeanddate.com/worldcl...R+SUPPORT+CALL&iso=20240217T1530&p1=2416&ah=1

 

Valentine’s Day Interview with Jamison Hill & Book Promotion

https://www.meaction.net/2024/02/09/valentines-day-interview-with-jamison-hill-book-promotion/

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 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

 

https://www.meaction.net/2024/02/29/meaction-nih-study-response/

 

From the above

 

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/

 

#NotJustFatigue – Community Member Launching A New Website Today!

https://www.meaction.net/2024/03/01/notjustfatigue-community-member-launching-a-new-website-today/

 

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

 

Saturday, March 16

Caregiver support call (for caregivers of people with ME (#MyalgicEncephalomyelitis), #LongCOVID and associated conditions)
https://www.meaction.net/event/me-caregiver-support-call/2024-03-16/

3:30 PM ET/7:30 PM in Great Britain & Ireland

Find the time in your time zone here:
https://www.timeanddate.com/worldcl...R+SUPPORT+CALL+&iso=20240316T1530&p1=179&ah=1

 

"Composer Creates Concerto to Shine a Light on Chronic Illness: Danish composer Martin Byrial's latest concerto is based on stories sent to him from families fighting chronic illness"
https://www.classical-music.uk/news...-concerto-to-shine-a-light-on-chronic-illness

"Having given the recording of the concerto’s world premiere to MEAction Network..."

 

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/

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.

Spoiler: Photo of Lucira test box and Test to Treat sleeve

 

#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

 

Saturday April 20
CAREGIVER SUPPORT CALL ( for caregivers of people with ME (myalgic encephalomyelitis), #LongCOVID and associated conditions)

https://www.meaction.net/event/me-caregiver-support-call/2024-04-20/

3:30 PM EDT/8:30 PM in Great Britain & Ireland

Find the time in your time zone here
https://www.timeanddate.com/worldcl...+SUPPORT+CALL+&iso=20240420T1530&p1=2416&ah=1

 

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/

 

Other familiar names on the list:

Avindra Nath - Demystifying exhaustion

Ziyad Al-Aly - Advocating with research

Akiko Iwasaki - A better booster

Eric Topol - Scientific translator

 

#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)

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!