The #MEAction Network

We are thrilled to share that a new event happened last week in Minnesota - a Midwest Tribal ECHO* focused on ME/CFS and Long COVID including potential causes, risk factors, treatment, and management. Thanks to the Native American Community Clinic in Minneapolis for collaborating with MN to make this happen! Thanks also to Dr Stephanie Grach for giving the presentation.

Available here: https://ow.ly/1Jxz50Tm6hl

*In partnership with Stratis Health, Native American Community Clinic (NACC) facilitates these live educational and knowledge-sharing events using the Extension for Community Healthcare Outcomes (ECHO) mode. Native American Community Clinic opened to address the health disparities within the urban Native American community of the Twin Cities. Their mission is to promote the health & wellness of mind, body, and spirit of Native American families.




Image description: Graphic showing an open laptop computer with a Midwest Tribal ECHO slide. Text above the computer: New Teach ME Treat ME Event:
Midwest Tribal ECHO focusing on ME/CFS and Long Covid. Special thanks to the Native American Community Clinic in Minneapolis for collaborating with MN and to Dr. Stephanie Grach for presenting.

Tomorrow is AAPD’s Virtual Advocacy Hill Day. This Disability Voting Rights Week, we urge you to create your plan to vote and make sure you are registered. We also invite you to join us to take bold action to protect and expand voting rights for all! https://mobilize.us/s/8fEPX0

American Association of People with Disabilities shares, "This fully remote event is your opportunity to help drive forward critical legislation that impacts the lives of millions of Americans, especially people with disabilities and historically marginalized communities. We’re focusing on three key bills: the John R. Lewis Voting Rights Act (H.R.14 | S.4), which restores protections against discriminatory voting practices; the Native American Voting Rights Act (H.R. 5008 | S. 2702), designed to eliminate barriers that prevent Native Americans from voting; and the Accessible Voting Act (H.R.7389 | S.3748), which will improve voting accessibility for disabled voters across the country.

We need your voice now to urge Congress to pass these vital pieces of legislation! By joining this advocacy day, you can be part of the movement to create a more inclusive, accessible, and equitable voting system."



Image description: Screenshot of the event: AAPD Virtual Voting Rights Advocacy Hill Day. A photo of a person smiling in a wheelchair wearing a purple shirt. Underneath this text is circled in red: Time Thursday September 12 9 am - 9:30 pm EDT. Black banner at the bottom with text: Disability Voting Rights Week 2024.

It is so important to know how to vote in your state! This Disability Voting Rights Week, take time to check out these helpful guides for people with disabilities voting in the upcoming election on Tuesday, November 5, 2024 by American Association of People with Disabilities https://www.aapd.com/voter-info/

Yesterday, we encouraged you to make a voting plan. The information in these guides will help you learn what your state allows for voting by mail, in-person, early voting, etc. It is important to be prepared to vote!

DVRW is about advocating for accessible futures, celebrating community, and building power. Let's make sure everyone in our community is prepared to exercise their right to vote.



Image description: A map of the Unites States showing an outline of all the states on a blue background with red writing. Text at the top: "Voting guide by state for people with disabilities now available! www.aapd.com/voter-info/ " Text in bottom corners: " "

At 8PM on , join us in lighting a candle to show your support for su***de prevention, to remember a loved one & for the survivors of su***de.

Please reach out if you need to talk or text. Resources here: https://ow.ly/aS8N50Tjvn8

Time to get ready to vote! It's Disability Voting Rights Week 2024! Is your voting plan ready?

Yesterday, we urged you to register to vote and to check your registration. Today, we encourage you to make a plan! Whether it is your first time voting or your fiftieth, it is important to make a plan. Disabilities can make it a trickier and a plan helps!

American Association of People with Disabilities has a great document to help. https://bit.ly/m/REV-UP

- Check to make sure you are registered to vote!
- Learn key dates, like election day, early voting, and mail-in voting deadlines
- Choose how and when you will vote
- Consider your access needs
- Learn what’s on your ballot.



Image description: A graphic with a 3-D white title reads, “Plan to Vote, Your Vote Matters.” The word matters is circled in red for emphasis. The subtitle reads: “Make your plan: bit.ly/m/REV-UP.” Below the title is a bullet point list: “Check to make sure you are registered to vote!; Learn key dates, like election day, early voting, and mail-in voting deadlines; Choose how and when you will vote; Consider your access needs; Learn what’s on your ballot.” The bottom left features the AAPD REV UP logo. The background features an image of a white woman giving a presentation, next to her is a Black ASL interpreter. The image has a dark blue tint.

Changing the narrative on su***de requires systemic change. It's about shifting from a culture of silence and stigma to one of openness, understanding, and support.

Start the conversation today. Every chat, no matter how small, builds a more supportive and understanding society. Together, we can make a difference and prioritize su***de prevention, ensuring everyone gets the help they need.

We maintain a list of resources on our site and urge you to reach out anytime. https://www.meaction.net/support-and-crisis-resources/

***dePreventionDay

Image description: Text graphic with a speech bubble. Text: Every conversation, no matter how small, contributes to a more supportive and understanding society. 10 September World Su***de Prevention Day www.iasp.info/wspd

This , check out our new flier* that you can print & take to your clinician sharing ME/CFS continuing medical education. We also offer email language if you prefer to share with your clinicians that way! https://ow.ly/lyMF50TfVz3

*This links to our most updated version!

As a partner of Disability Voting Rights Week, is building the power of the disability vote in our communities during the week of September 9-13, 2024. Disability Voting Rights Week is a national, nonpartisan initiative this September to build the power and presence of the disability vote. Disability Voting Rights Week is coordinated by the American Association of People with Disabilities’ (AAPD) REV UP Voting Campaign. American Association of People with Disabilities

This Disability Voting Rights Week, we have a message for our community: Your vote is your right and your vote is powerful.

This Disability Voting Rights Week, we are rallying the disability vote, making sure our communities are registered and ready to vote and have access to the ballot. When people with disabilities unite and advocate for civil and disability rights, we have been able to achieve meaningful change. In 2024, millions of disabled people will cast their ballots in elections across the country that will impact access to health care, financial security, the ability to live in community, and so much more.

During this Disability Voting Rights Week, an important step to take is to make sure you are registered to vote or that your registration is up-to-date. So today, go to vote.org and register or check your registration.

We will be sharing more resources throughout the week! Follow these hashtags:




Image description: A graphic with a large font text reads “When I liberate myself, I liberate others. If you don’t speak out ain’t nobody going to speak out for you.” Underneath reads “Fannie Lou Hamer.” On the right side of the graphic is an image of Fannie Lou Hamer, a Black woman with black shoulder length hair and a black crew neck dress, speaking. Her first is clenched as she speaks. Below is the REV UP! AAPD logo.

Welcome to our first ! We are excited to introduce the first video in a four-part series focusing on post-exertional malaise and pacing created by Patient-Led Research Collaborative and . https://ow.ly/AvWw50Tjcro

Our first episode focuses on understanding post-exertional malaise and features an excellent presentation with Dr. Brayden Yellman from Bateman Horne Center with a follow-up by Chimére L. Sweeney. Dr Yellman is a board-certified physician in internal medicine and rheumatology at Bateman Horne Center and also serves on the Scientific and Medical Board for . This presentation focuses on the importance of pacing and PEM (post-exertional malaise). Pacing is a crucial intervention for ME and Long COVID.

Let us know what you think in the comments. Thank you to Dr. Yellman for your time and effort.



Image description: Screenshot from a video showing Dr. Yellman (white man with short hair wearing a tie and sweater) sitting in an office speaking to the camera. Text above: Understanding Post-Exertional Malaise with Dr. Brayden Yellman. Text below: Four-part video series created by Patient-led Research Collaborative and

We are excited to share that we will be focusing on medical education on Mondays during the months of September and October! We will start with a new video series! and Patient-Led Research Collaborative have created a four-part video series focusing on post-exertional malaise and pacing. We will share a new video each Monday in September. Watch for the tag ! We will also be sharing some actions you can take on Mondays as part of our Med Ed Monday focus.

Each video includes an interview with an expert conducted by Chimére L. Sweeney, a Long COVID author, speaker, filmmaker, and writer. We are thankful for the experts that gave their time to this project including Dr. Brayden Yellman, Dr Katherine Rowe, Darren Brown (PT), and Brittany Spencer (LCPC).

We have great news! Beginning the week of September 9th, will host working groups so folks volunteer in three different areas: Social Media, Narrative, and Activism. Everyone is welcome to volunteer! These groups are volunteer led, supported by members of staff.

The goals of each group will be to raise awareness, expand reach, and to create concrete change for people with ME and Long COVID. You can read more about each group and apply here: https://ow.ly/obO450TgMeW

Advocacy Group meets on Wednesdays at 3 pm ET

Social Media Group meets on Fridays 2 pm ET

The Narrative Working Group will meet on Thursdays at 2 pm ET

Editing to add: we edited this flier. The new one can be found at the same link in the post or at bit.ly/TMTMflyer

Check out our new flier that you can print & take to your clinician sharing the ME/CFS continuing medical education created by & Mayo Rochester Clinic staff. We also offer email language if you prefer to share with your clinicians that way! https://ow.ly/lyMF50TfVz3

It's hoodie season! Or it will be or maybe it is hoodie season all year long for you. The good news is we have lots of new hoodies to choose from! Check out our , , and hoodies: https://bit.ly/MEActionStore

Not into hoodies? We have sweatshirts and long-sleeved tees and short-sleeved tees too! Totes, mugs, hats, and more! A small portion of your purchase goes to support .

Our campaign impact continues! See our full update here: https://www.meaction.net/2024/09/04/teachme-treatme-we-cant-believe-these-numbers/

We tallied up some numbers from our Teach ME, Treat ME campaign to educate clinicians and medical students about ME, and the results are fantastic! The campaign has been a herculean effort by staff and our 16 incredible teams across the U.S and U.K.

And, the campaign is ongoing! You can email your clinician or share our new flier in person. Share our ANKI flashcards with med students. We still have 3 upcoming events, and is working to secure partnerships with 5 major medical systems across the U.S. to build up their ME care.

Campaign by the Numbers:
- 19 medical education events across the U.S. and U.K.
- 402 clinicians attended med ed events.
- 100,000 views of the Mayo Clinic Proceedings paper, with thousands of new views during the campaign!
- 421 clinicians took the Mayo CME or got credit for another CME as part of the initiative so far!

One of the most exciting aspects of our campaign was our reach to non-followers. These may be people who have never heard of ME but are ready to learn, researchers, politicians, clinicians, med students, journalists…you never know who you might reach on social media!

- Our content reached almost 300,000 users and had nearly 500,000 impressions.

- The amount of non-followers who saw our content dramatically increased. On Facebook our reach to non-followers increased by almost 200% and on Instagram our reach increased by 600%!

- On X (aka Twitter) the “years it took to receive diagnosis” video received over 43,000 views. On Instagram, the same video received 18,000 views and around 62% were from non-followers.

- On Instagram, your videos of “why this campaign is important” received 19,000 views and 76% of those were non-followers. Shares on those reels individually brought in another 22,000 views.

Happy Labor Day! We are taking a day of rest and will see you back here tomorrow! We have a busy September ahead!

Join us at our amazing virtual art gallery this weekend! As we come to the end of August, it is the perfect time to visit The Severe ME Artists Project virtual gallery that is held in honor of Severe ME Day on August 8th. meartistsproject.com

We have so many forms of art submitted. You will find a video compilation, writers gallery, and the many images submitted of various styles of art. This project was created with an idea to allow those with severe ME to share their artwork with the larger community and provide an opportunity to be SEEN! Help us to share!



ID: A bench sits in front of a framed image. Text in the image: Severe ME Artists Project Gallery 2024. Now open for virtual showing at meartistproject.com.

We have a question for you. What information was most useful to you as you were learning about myalgic encephalomyelitis (aka ME/CFS)?

Answer here: https://ow.ly/b21S50TaUYf

has been asked by different federal agencies about ME/CFS information and we want to make sure our answers reflect the community at-large. This form will remain open until October 1st.

You can share a brief answer or a longer one. Put your health first. The form does not let you come back to it so if you are adding a longer answer you might want to copy and paste it in.

You are welcome to also share your replies in the comments but please remember only the ones in the form are being gathered. Thank you.



Image description: Red square image with a white box in the center that features a question mark at the top. Text: "What type of information has been most useful to you as you were learning about myalgic encephalomyelitis (aka ME/CFS)? Please use form to reply. Thank you" Below the white box is the logo.

Work moves forward with the Minnesota Department of Health Grant! 's Ben HsuBorger met with Minnesota this week to give an update! Thanks to state chapter lead Terri Wilder and all who attended! See original announcement here: https://www.meaction.net/2024/07/30/meaction-awarded-3-year-grant-by-minnesota-department-of-health-long-covid-program/

Attention partner caregivers! Our monthly meeting is this Sunday, Sept. 1st, at 12 pm Pt/ 3 pm ET/ 8 pm BST. https://www.meaction.net/event/me-partner-caregivers-support-group/2024-09-01/

We invite 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. While we focus on partner caregivers, all caregivers are welcome to join for extra support.

If you would like to be added to our email list and receive meeting info and updates, please email [email protected].

Last chance to grab your summer style tees and tanks! Fall is coming and that means hoodies and other cooler-weather styles are coming your way! All of our items are now set to ship on demand. So grab yours now! https://www.bonfire.com/store/meaction-1/

Tell us what you are looking for for fall/winter! Some of the options are hoodies, sweatshirts, and long-sleeve tees. Do you want an organic option? Interested in something other than clothing? Right now, we have caps, hats, totes, and mugs.

Because it is set to on demand shipping, right now receives around to $5 to $6 for most purchases. When you order Bonfire should be clear about what amount goes to us in your email from them. You also have the option to add a further donation.

Look for our newest items in early September!

RECOVER is entering a new phase called RECOVER TLC, with The National Institute of Allergy and Infectious Diseases (NIAID) at the helm. A workshop at NIH will be held on September 23-25 as part of this effort to introduce new clinical trials for Long COVID. This kick-off meeting will be held both in person on the NIH campus and virtually. Registration deadline is August 30th. https://ow.ly/Hg9950T4C76

“Long COVID researchers, healthcare providers, patients, advocacy organizations, industry partners, Federal scientific agencies, and Federal policymakers” are all invited to help shape RECOVER-TLC.

Participants will come together to:
- Make sure RECOVER-TLC applies all the lessons learned over the last three years
- Discuss the structure and governance of RECOVER-TLC
- Survey the current research landscape
- Help plan future NIH Long COVID clinical trials

MEAction has always fought for better research for people with ME/CFS. and has strongly urged NIH’S RECOVER to integrate experts with lived experience in their efforts since its inception. We know infection-associated chronic illnesses have been studied not for the past four years, but the past four decades, and that ignoring our history means repeating the mistakes of the past.

We welcome this opportunity to collaborate and push for change side by side with advocates, researchers, clinicians and policymakers.

We at MEAction know we will continue to work hard to ensure that people with infection-associated chronic illnesses have access to the testing and treatment they need to live full lives.

Please see links in the comments for further background information.



ID: Square graphic with information also found in the post about the upcoming kickoff meeting for NIH RECOVER TLC. Alt text also available.

Attention med students and recent med school grads! Heading back to school? Do you use Anki flashcards? We have an Anki flashcard deck for medical students focusing on infection-associated chronic illness available! It includes questions on ME/CFS, Long COVID, POTS, MCAS, EDS, SFN, SIBO, and more. It was written by staff and volunteers and reviewed by medical providers.

Check out our Anki flashcard deck and share with your fellow students to ensure that everyone has access to the information they need to understand and address these underserved conditions. Link to access for Anki users: https://ow.ly/FyOe50T3lA0

To our wider community, please pass this resource on to any med students in your life! Let’s help our future clinicians learn about these conditions.

And just in case you are wondering what Anki flashcards are and how med students can use them, the AMA shares, “Anki flashcards are a digital learning tool designed to help medical students effectively learn and retain vast amounts of complex medical knowledge. Anki utilizes spaced repetition, an evidence-based learning technique that optimizes memory retention and recall”

Happy birthday to all who are celebrating this August! If you want to share that your birthday is this month, let us know in the comments as we would love to wish you happy birthday! (Since comments are p***c please do NOT add date/year with your name.)

An extra thank you to those who are dedicating a birthday fundraiser to ! It is greatly appreciated.

Did you know that you can start a fundraiser for at any time on Facebook and Instagram? You can! You can click on raise money or add fundraiser to your post. You can also head here to start a fundraiser and you can choose for it to show up on Facebook and Instagram: https://www.facebook.com/fund/MEActNet/



ID: Yellow flowers are scattered across a whitewashed wooden backdrop. Text: Happy Birthday to all who are celebrating this August!

We want to send out a huge thank you to all of our volunteers! What you do for our community cannot be overstated!

Volunteering with us can look very different depending on your interests. We have volunteers that help keep our support and affinity groups safe and open. Others are meeting now to organize three different working groups, each with a different focus. We have volunteers that run monthly calls and others that run and participate in state chapters. Sometimes volunteers step in for a short time to help with a specific project - like a event. Wherever you are pitching in or have pitched in, this thank you is for you!!!

You are volunteering from your homes and sometimes your beds. We can meet online in our pjs or just say today is camera off kind of day AND WE ALL UNDERSTAND.However you volunteer, you are amazing!

Please think of this as the digital version of showing up at your doorstep or by your bedside with a big bouquet of flowers (if you are not allergic!) or your favorite treat. So many of you continue to quietly show up and do what you can and help keep us moving forward. And this is us making some noise (quiet noise that will not overload you) about all you do so our whole community can join in thanking you too!

And those of you not signed up to volunteer but who regularly engage on social media, you share our content, you offer encouraging words in our support spaces- we thank you, too! You are awesome.

Any way you participate is valuable!!! And you are valued whether you can join in or not. We hold close all who are unable to join in how they wish they could. This illness is hard.

Community is truly at the heart of everything we do. So let’s show each other a little love and appreciation!

Newest update from Karen Gordon.

An update and video from Karen Gordon filmed on 5 August at Conquest Hospital Hastings . Please keep sharing and signing the petition. https://change.org/p/save-karen-gordon-from-dying-of-malnutrition-and-dehydration-due-to-nhs-failings

https://x.com/TeamKarenGordon/status/1824205986598375450/video/1

Our ME/LC (and associated conditions) caregiver support call is tomorrow - Saturday, August 17th at 12:30 pm PT/ 3:30 pm ET/ 8:30 pm BST. https://www.meaction.net/event/me-caregiver-support-call/2024-08-17/

If you would like to be added to our email list and receive meeting info and updates, please email [email protected] Please use Caregiver Email List in the subject line.

From The Network UK regarding Karen Gordon.

x.com

A new interview with NIH Director Dr. Monica Bertagnolli on next steps for RECOVER, future Long Covid research plans, and more by Betsy Ladyzhets for The Sick Times is now available. https://thesicktimes.org/2024/08/13/qa-nih-director-dr-monica-bertagnolli-on-next-steps-for-recover-future-long-covid-research-plans-and-more/

For those unable to read the whole interview, Ladyzhets has a key points section. Summary of key points:
- RECOVER-Treating Long Covid will kick off in September
- The $515 million allocated has not been budgeted yet but clinical trials are prioritzed
-Bertagnolli views viral persistence and immune system dysfunction as two areas of study that hold promise for developing treatments.
- NIH will need additional funding from Congress to transition from RECOVER to long-term research infrastructure for Long Covid, ME, and other related chronic diseases.

More items of interest:

- People with Long Covid, "people who take care of people with Long Covid, people with ME/CFS, people who are smart on the clinical care" are invited to the September meeting.

- BL mentioned Severe ME Day (thank you) and asked about decentralized trials or remote participation, ways to include these people more. MB replied that it would be an "important part of the conversation that we have for our trials going forward, specifically trials for those people with the most severe disease."

- "We have a commitment to understanding this disease in young people. And it’s absolutely critical. ME/CFS, this could be a disease that if a young child gets it, it could affect them for the rest of their life." MB when asked about pediatric research.

- "[RECOVER] was a one-shot, two-shot funding. I think we’re not going to solve the problem with the current funding we have. Transitioning into a long-term project will teach us so much that we need to learn about the post-infectious complications for Covid, and ME/CFS, chronic Lyme disease, all of these chronic conditions. A long-term program that’s really robust in these conditions is going to be important..." MB

- When asked about ME/CFS funding that is commensurate with the burden of the disease and the ME/CFS Research Roadmap, MB said: "We want to be able to conquer ME/CFS and do it in the best possible way. I hope that the ME/CFS community will see much of the research that’s happening now, spurred on by Long Covid, to benefit them. We’re going to look for the similarities and differences between these different types of viral triggers that can benefit both sides. And we have a small but mighty team of long-term ME/CFS researchers who’ve been interested in this problem, some internal to NIH, that we intend to continue to fully support."

- BL asked about the NIH ME/CFS intramural study and the criticism is has received. The NIH is “reviewing the study to determine if the methods justified the conclusion.”

Last Friday, a new review “Long COVID science, research and policy” by Ziyad Al-Aly, Hannah Davis, Lisa McCorkell, Letícia Soares, Sarah Wulf-Hanson, Akiko Iwasaki & Eric J. Topol was released in Nature. It covers the state of science on Long Covid, discusses the impacts of long Covid, and then shares research and policy roadmaps for the future. https://rdcu.be/dQCue

We pulled some main points for those unable to read the entire review but we had to leave a lot out! So please know this is a brief summary of what we felt you might want to know most.

Each social square has a subject and relevant material from the review. Any emphasis added is ours (underlining, circling, etc.)



Image descriptions: Each square is simple text with a bolded subject. The article title where it can be found is at the bottom of each square. Alt text is available.

Can we have a community virtual hug? Or hand to hold? Or a sit quietly together existing in the same space? Whatever is preferred. Let’s take care of each other!