USA: News from #MEAction

Severe ME Artists Project 2023

https://www.meaction.net/2023/06/30/severe-me-artists-project-2023/
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MEAction said:
#MEAction is thrilled to announce our Severe ME Artists Project 2023 that will feature work from those within the severe ME community and will be in recognition of Severe ME Day on August 8th!

This project will be an opportunity for those with severe ME to showcase your artwork, whether it be writing, photography, drawing, or any other way that illustrates their talents. You can also submit past artwork created before you got sick.

The Severe ME Artists Project 2023 will feature a video compilation and an online gallery of submitted work. This project will be shared with the community around Severe ME Day with the goal that people can watch the video and/or scroll through the gallery when it is best for them.

Here are the galleries from 2021 and 2022 that you can review to get a sense of these amazing projects.

The same as last year, we are asking that people only submit ONE piece of work to be featured in the video and the gallery. Over the past few years, we have received so much participation that in order to make this project feasible, we can only handle one piece of work per person.
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Details on how to submit your art piece and how to label it are on the website.

The submission deadline is Tuesday, July 25th.
 
MEAction has announced that they will be hosting the Body Politic community, which was one of the main nexus from which Long Covid advocacy, and the two significant patient-led studies, originated. I know there are still some concerns about the overlap and differences with LC, but I look at the LC community and frankly I do not see any difference at all. We have the same issues and goals.

I think that the main issues with BP were over funding, there really has not been much going on in this regard. Plenty of research money, but it takes years to build up a patient community when the medical profession is opposed to it and offers no institutional support or resources.
We are excited to announce that #MEAction will now host @itsbodypolitic's advocacy work as a project of #MEAction.

Many of you know that Body Politic’s support group has officially closed. This was a devastating loss to the community ...#MEAction knew we must keep the advocacy work alive that @itsbodypolitic so carefully and thoughtfully built over these last few years.

The Body Politic Project will be ONE of #MEAction’s many projects. Our goal is and has always been, to support people with ME. As more people with Long COVID begin to be diagnosed with ME ....this joining of forces is an opportunity that we believe will be beneficial to us all.

Over the coming months, we will thoughtfully put together a plan to align these two communities and build out our Body Politic Project. We will keep you up to date as our intentions and plans develop.
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A reminder that MEAction has a weekly online writing group for people with ME that's called Writing From Our ME Lives.

The next session is Thursday, July 27, at 11 am Pacific Time / 2 pm Eastern Time.

https://www.meaction.net/event/writing-from-our-me-lives/2023-07-27/
MEAction said:
A People with ME writing group! Come, Try it out!!

#MEAction is excited to partner with longtime ME advocate and mother of a pwME, Bobbi Ausubel, to host a brand new writing group for people with ME, Writing From Our ME Lives.

This group is for people with ME who are interested in writing stories, tales, poems, essays, songs, and diaries. The writing can be fiction, non-fiction, and even whimsical.

The group will be offered every week on Thursdays from 11am PST/2pm EST* and will be about an hour and a half. Members of the group will be able to drop in or out throughout the time and attend when they are able. Members will not need to attend every week, but we want to provide an option to connect once a week if possible.
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#MEAction Calls for ME & Long COVID to be Part of COVID-19 Task Force

https://www.meaction.net/2023/07/25...-covid-to-be-part-of-covid-19-task-force-act/
MEAction said:
#MEAction and three Long COVID organizations published a statement today urging Congress to support bipartisan legislation to establish a national task force to investigate the COVID-19 outbreak. Our organizations have also signed onto Marked By Covid’s open letter to Congress calling for the bill’s passage.

Together, we are urging Congress to hold our federal health and research agencies accountable for their abject failure to be prepared for the Long COVID and ME/CFS crisis, and for their inadequate response to protecting and caring for Americans with these conditions.
...

“The problem isn’t that Long COVID is new,” said Ben HsuBorger, #MEAction U.S. Advocacy Director. “The problem is that such illnesses have been ignored and stigmatized for decades.”

"ME advocates have tried for decades to change this situation by directly engaging the agencies. But we have found ourselves going in circles with simple problems taking years to solve and key challenges never being addressed.”
Mary Dimmock, ME Advocate​
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From: #MEAction


Today we honor and recognize Severe ME Day, Tuesday, August 8th.
Severe ME Day is a day of remembrance when we think of those whom we
have lost to myalgic encephalomyelitis (ME), and focus on those living
with severe ME. For those of you in our community who have severe ME,
we love you and we are fighting with you.

August 8th was chosen to honor Sophia Mirza, a severe ME patient who
died of the disease. Severe ME Awareness Day was started by the 25
Percent ME Group in 2013.

In honor of this day, #MEAction is proud to share the Severe ME
Artists Project 2023! This project exists because over 150 of you
submitted photos, drawings, writing, music and videos of your work! We
debuted this project two years ago and we continue to be blown away by
the creativity in our community! Thank you!

#MEAction recognizes the difficulty of living with severe ME and hopes
that on Severe ME Day and always you feel loved and supported. 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!

We also want to acknowledge the grief that happens around art for
those unable to practice their art now due to illness and those who
have had to change the way they practice their art. We are holding
space for you and keep you at the center of all we do at #MEAction all
year long.

Here is the video compilation featuring all of the wonderful art
submitted by our severe ME community! This video is over 40 minutes
long. There is sound used in this video, so please use mute if need to
while watching. Also, the video will feature captions where needed.
Feel free to pause and come back to watch the rest of the video when
you have the energy.

You can view the full video of work submitted here:


To view the written work and all the art that was shared, check out
the Severe ME Artists Project Gallery. This page has a lot featured on
it, so please take your time and come back often!

Severe ME Artists Gallery 2023
https://www.meaction.net/2023/07/31/severe-me-artist-project-2023-gallery

Again, thank you so much to everyone who participated in this project!
Your work and your creativity inspire us! And on Severe ME Day and
every other day, please know that you are not alone. #MEAction’s
community is here for you. We are here to support you and we are in
this fight for you.


Enjoy!
All of us at #MEAction
 
#MEAction and Long COVID Justice Issue Press Statement about NIH Failure of Long COVID

https://www.meaction.net/2023/08/23/meaction-issues-press-statement-about-nih-failure-of-long-covid/
#MEAction said:
#MEAction and Long COVID Justice issued a press statement yesterday about our communities’ deep concerns regarding the rollout of RECOVER’s clinical trials for Long COVID.

As studies show half of the Long COVID community meets the diagnostic criteria for ME/CFS – and our core symptoms overlap – RECOVER’s research has major implications for our community.

In the press release, we wrote about the great need to trial pharmacological drugs that have already shown promise in the ME/CFS community. Instead, the NIH is trialing brain games that cause cognitive PEM, graded exercise and meditation.
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Press release here:

https://www.meaction.net/wp-content/uploads/2023/08/RECOVER-clinical-trials-press-release-.pdf
 
#MEACTION GEORGIA SUPPORT CALL September 21

https://www.meaction.net/event/meaction-georgia/2023-09-21/
People anywhere in the world are welcome.

1:00 PM EDT/6 PM in Great Britain & Ireland

Find the time in your time zone here
https://www.timeanddate.com/worldcl...ORGIA+SUPPORT+CALL&iso=20230921T13&p1=25&ah=1

"September 21 EDT 1:00 pm- 2:00 pm #ME ACTION GEORGIA #MEACTION GEORGIA SUPPORT CALL Join #MEAction GA the 3rd Thursday of the month at 1pm EST for our monthly support call. All pw/ME are welcome and no previous attendance is needed."

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#MEAction is creating an online home to showcase the pillowcases created for the 2023 Millions Missing demonstration.

A "preview party" will be held on September 24, at noon PDT / 3:00 pm EDT / 8:00 pm BST

https://www.meaction.net/event/join-us-for-a-preview-party/

MEAction said:
We have built a virtual home for the Story of the #MillionsMissing.

On the site, we share a brief history of #MillionsMissing throughout the years, and then focus on our most recent and iconic demonstration on the Mall. We have created a gallery to showcase the hundreds of pillowcases, each telling its own unique story through art and words.

We are hosting a preview party for the community on September 24th at 12 pm PT/ 3 pm ET/ 8 pm BST.

Join us for a casual time to chat and look over the new virtual Story of the #MillionsMissing. We can share our stories with one another, celebrate #MillionsMissing and brainstorm how to share our stories beyond our community.

(The event will be recorded for those unable to attend live.)
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EDIT: I forgot to add this information which was in an email, not on the website:
MEAction email said:
Send in a Caption for Your Pillowcase​

31cdee47-c01f-cb44-516d-95e8d8237f54.jpeg
​

We would love to add short captions to the pillowcases to tell more of your story! If you sent in a pillowcase or created one at home, we’d love for you to send in a caption to add to your pillowcase featured in the gallery.

Email us a caption and image of your pillowcase (or description) to info@meaction.net. Please limit the caption to 40 - 75 words (max 400 characters).
​
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#MillionsMissing is our drumbeat” – Preview Party on September 24 (Sunday)

https://www.meaction.net/2023/09/20/previewparty924/
MEAction said:
RSVP TODAY:
We are hosting a preview party for the new, virtual Home of the #MillionsMissing this Sunday, September 24th, at 12 pm PT/ 3 pm ET/ 8 pm BST!​
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We have built a virtual home for the Story of the #MillionsMissing.

On the site, we share a brief history of #MillionsMissing throughout the years, and then focus on our most recent and iconic demonstration on the Mall. We have created a gallery to showcase the hundreds of pillowcases, each telling its own unique story through art and words.
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RSVP here:

https://www.meaction.net/event/join-us-for-a-preview-party/?mc_cid=ba424561f0
 
Email from #MEAction about their new online home for Millions Missing:
#MEAction said:
Exciting news!! We have created a Home of the Millions Missing where we showcase our historical movement for ME.

We continue to see photos of our Millions Missing demonstrations on the National Mall and in front of the White House circulate throughout the media, and we want to make sure the world knows the full story of ME behind those protests!

On the site, we celebrate the amazingly creative and powerful demonstrations held in hundreds of cities around the world, beginning in 2016. Enjoy photos from the #MillionsMissing demonstrations throughout the years! We dedicate a page to our iconic U.S. demonstration blanketing our National Mall with 300 red cots, decorated with your pillowcases.

Be sure to check out the pillowcase gallery featuring the hundreds of pillowcases sent in to display on the pillows on the Mall. Your stories told through your pillowcase are powerful and need to be shared. Click thru them all!

If you would still like to send in a brief caption (40 - 75 words) for your pillowcase, please email info@meaction.net.)
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Full email here:

https://mailchi.mp/meaction/nih-comes-up-short-once-again-2271014

EDIT: Don't be confused by the link not matching the topic. For some reason they always use this same link ("NIH comes up short once again") when they send email to their mailing list.
 
Email from #MEAction about the Society to Improve Diagnosis in Medicine’s (SIDM) Conference:
#MEAction said:
#MEAction will be participating in this year’s Society to Improve Diagnosis in Medicine’s (SIDM) Conference in Cleveland, Ohio on October 8-11, 2023!

As part of this conference, there is the SIDM2023 Patient Summit: Celebrating Patient-Initiated Innovations in Improving Diagnosis, where our own Director of Scientific and Medical Outreach, Jaime Seltzer, will present about #MEAction’s work on decreasing diagnostic uncertainty in ME/CFS! She will discuss why #MEAction was created, how we grew as an organization, and how we continue to fight for an accurate, timely diagnosis for everyone.

The Patient Summit is FREE to attend and will be live-streamed on Monday, October 9th (10:15am-12:15pm ET).

You will need to pre-register to receive access. The pre-registration for the livestream is the same as for in person. All items with an asterisk are required.
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Pre-register here:

https://www.sidmconference.com/sidm2023-cleveland/registration

Full email here:

https://mailchi.mp/meaction/meaction-presenting-at-this-years-sidms-conference

[Hey! They changed the link this time :)]
 
[Note: The document mentioned below has its own forum thread - https://www.s4me.info/threads/diagn...onic-fatigue-syndrome-2023-grach-et-al.35540/ I put this post here because it's from #MEAction and has their own editorial point of view.]

Email from #MEAction about a recent ME/CFS publication in Mayo Clinic Proceedings that's co-authored by Jaime Seltzer:
#MEAction said:
We are overjoyed to announce that #MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, has co-authored a paper in Mayo Clinic Proceedings on how to diagnose and manage ME/CFS, along with Dr. Stephanie Grach, Dr. Ravindra Ganesh and Dr. Tony Chon.

The paper has already been widely popular! YOUR shares are spreading information about ME/CFS far and wide! It’s been live less than a week, and it’s already:
  • It’s in the top 1% most shared of all Mayo Clinic publications.
  • It’s the most-shared paper amongst its contemporaries at Mayo Clinic Proceedings.
  • It’s in the top 0.2% most shared research products of all time.
The paper provides an excellent guide on how to diagnose ME/CFS and common comorbidities, suggesting specific tests to run to identify abnormalities. It also offers gold standard recommendations for treating common symptoms, with a special note about how to recognize and manage severe ME.

“This paper is about giving clinicians the skills and real-world solutions to partner with patients in their care,” said Seltzer.
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Full email here:

https://mailchi.mp/meaction/advocac...-make-a-difference-for-people-with-me-2271110
 
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