USA: News from #MEAction

#MEAction & Mayo win Grant for Diagnostic Improvement

https://www.meaction.net/2022/09/22/mayo-grant/
#MEAction website said:
Amazing news! #MEAction and Mayo Clinic applied for a grant together from the Society to Improve Diagnosis in Medicine to transform the diagnostic and treatment process at Mayo Clinic Rochester for people with ME/CFS!

After several preliminary discussions between our Director of Scientific and Medical Outreach, Jaime Seltzer, and Dr. Stephanie Grach and Dr. Ravindra Ganesh of Mayo Clinic, we decided to embark on an exciting project together: applying for SIDM’s annual seed grant to improve diagnostic quality and reduce harm from diagnostic error.

And we were successful! #MEAction and Mayo Clinic won the grant together!
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Announcement on twitter:
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#MEAction’s BOLD Press Strategy Leads to BIG Press Payoff!
by Adriane Tillman

https://www.meaction.net/2022/11/03/bold-press-strategy-bold-press-payoff/
MEAction website said:
Nothing says BOLD ACTION like our press work. We are working daily to cultivate relationships with journalists and educate the press about ME, and we are seeing immense results.

In the past few weeks alone, our relentless press work has resulted in the San Francisco Chronicle publishing a frontpage article about ME, featuring Whitney Dafoe and his family, and The New York Times publishing an editorial calling for society to wake up to the reality of ME.

Our press team worked with both of these journalists for months to first get their attention, and then to educate them about the many facets of our story. We’re incredibly grateful for people like Whitney, Therese and Emily who openly shared their stories with the world.

#MEAction is often in the background in these articles with a quote or two, but it takes enormous effort to pitch stories to journalists, correspond about the ins-and-outs of ME and Long COVID, interview with the journalist and follow up on the coverage!
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Excerpt from an email from #MEAction:
#MEAction said:
#MEAction is headed back to the White House for another BOLD ACTION on December 1st at 12pm ET for World AIDS Day. This opportunity has come together quickly, and I’m reaching out to invite you to show up virtually—or on-site if you’re able to join me—for an important day of action.

Sign up to take virtual or on-site action

We’ve teamed up with the amazing and dedicated activists at Health GAP, ACT UP, Treatment Action Group, the Center for Popular Democracy, the Network for Long COVID Justice and many others to demand that President Biden and the U.S. Congress take urgent action to confront our global health nightmare.

We’re coming together in protest, not just about a single disease, but to call out the multiple, colliding pandemic crises that our government has continued to neglect for far too long—and that includes Long COVID and ME/CFS.

One of the four protest demands is to call on President Biden and Congress to:

“Announce the creation of a Domestic and Global Response Plan for Long COVID and Associated Diseases [e.g. ME/CFS] with the funding, policies, programs research, and accountability to directly impacted, independent communities required for impact.”

So mark your calendars for this day of action. Sign up to let World AIDS Day organizers know you plan to participate (virtually or on-site).
...
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Link to full announcement (name removed):

https://mailchi.mp/meaction/wad-protest-announcement
 
Excerpt from an email from #MEAction about their Chronic Illness Survey:
#MEAction website said:
Chapter Four of Six in the Chronic Illness Survey Adventure drops today, and we can't wait for you to rejoin the party!

The work you have put in so far means so much to us at #MEAction and to people with infection-associated chronic complex diseases the whole world over. Thank you to everyone with ME, Long COVID, MCAS, POTS, hEDS, and healthy allies who have taken this survey so far. Let’s keep going!

We need people to start the journey to finish it so we can have the most valuable possible data set. Haven’t signed up or haven’t started yet? You can sign up quickly here, then check your email for your personalized invitation!

The work you have put in so far means so much to us at #MEAction and to people with infection-associated chronic complex diseases the whole world over. Thank you to everyone with ME, Long COVID, MCAS, POTS, hEDS, and healthy allies who have taken this survey so far. Let’s keep going!

We need people to start the journey to finish it so we can have the most valuable possible data set.

...
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Link to full announcement (name removed):

https://mailchi.mp/meaction/help-symptom-cluster-characterization-reach-the-finish-line

EDIT:

Link to MEAction website page for Chapter 4:

https://www.meaction.net/epi/
 
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[Meant to post this last week ... better late than never!]

The latest post in the #MEAction series looking at different aspects of ME:

Facets of ME: Centering ME During the Holidays

https://www.meaction.net/2022/12/08/facetsofme-centering-me-during-the-holidays/

MEAction said:
Welcome to the final #FacetsOfME for 2022, where we focus on centering ME during the holidays. Facets of ME is an educational feature where we dive into one aspect (or facet) of living with ME. We have previously covered PEM, cognitive dysfunction, temperature dysregulation, loneliness, and travel.

It’s that time of year again. The weather turns cold (or hotter for our southern hemisphere friends) and holiday expectations start piling on from commercials, movies, friends, relatives, schools…well, you get the idea. A lot of societal pressure. It can be especially hard to stop, rest, and pace this time of year. We created the 12 Days of Pacing last year in December to help us focus on general pacing at this time. This year, we are focusing exclusively on pacing through the holiday season.
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From an #MEAction email:

"Join #MEAction's Board of Directors!​

We are excited to share this opportunity to become part of our growing board!

This is the opportunity to use your leadership and strategy capabilities to support the growth of a grassroots organization fighting for awareness and care for people with ME and Long COVID! If you are curious about board service, want to use your skills to help a growing nonprofit, or know someone who would be a great board member, please let us know and share this message!
...

Applicants from the United States and the United Kingdom are especially encouraged to apply!

Please upload your resume and letter of interest to this form. The deadline to apply is March 1st , 2023."
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Full announcement here:

https://mailchi.mp/meaction/are-you-ready-for-millions-missing-uk-2270121

EDIT: I have no idea why the link includes a reference to millions missing. Probably used a template from an old email announcement and forgot to change it. I doubled checked and this link does go to the announcement about looking for board members.
 
#MEAction, in partnership with Patient-Led Research Collaborative, has published a new Clinician’s Pacing Guide.

From an email announcement:
#MEAction said:
"This updated version has cited resources for clinicians. You can print off this guide and bring it to a doctor’s visit. With both patients and clinicians in mind, we believe this resource will be useful to providing education to clinicians who are just learning about PEM, as well as clinicians who want to dig deeper."
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Link to Clinician's Pacing Guide:

https://www.meaction.net/wp-content/uploads/2023/02/Pacing-Guide-Clincians.FINAL2_.pdf

Full email message here:

https://mailchi.mp/meaction/nih-comes-up-short-once-again-2270205

This post has been copied to a new thread in the Resources section:
Clinicians Pacing Guide, 2023, #MEAction and the Patient-Led Research Collaborative
 
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