USA: News from #MEAction

ahimsa said:
#MEAction, in partnership with Patient-Led Research Collaborative, has published a new Clinician’s Pacing Guide.

From an email announcement:


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
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The language in the clinician's guide is geared towards those who care for adults.
For clinicians who care for children please refer them to the pediatric pacing guide (https://www.meaction.net/wp-content/uploads/2022/08/Pediatric-Guide-to-Pacing-2.pdf) .
 
I don't think this has been shared yet? But this was an interesting conversation between Jamie Seltzer, Director of Science and Medical Outreach at #MEAction and David tuller.

From the YouTube description:
We spoke a couple of weeks ago about her background, her work, the debate around "functional" disorders, and related issues--although we didn't get to many of the issues on my list.

 
MEAction, along with several other patient organizations, have written to the DEA (Drug Enforcement Administration) to oppose a new rule restricting telemedicine appointments when prescribing certain pain medicines.
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ME & Long COVID patients need telemedicine prescribing flexibility

https://www.meaction.net/2023/03/31/dea-telemedicine-prescribing-rule/
meaction.net said:
#MEAction, Long COVID Justice, Strategies for High Impact and Patient-Led Research Collaborative have submitted a joint public comment to the U.S. Drug Enforcement Administration (DEA) expressing our concerns with its proposed rule for telemedicine prescribing of controlled substances when the practitioners and the patient have not had a prior in-person medical evaluation.

Data shows that the rollback of telemedicine prescribing will create further barriers to essential medication with potentially life-threatening consequences, worsening care access problems for people living with infection-associated complex chronic conditions such as ME/CFS and Long COVID, many of whom rely on medications for cognitive impairment and for pain.
...

This rule will disproportionately disrupt the care of people in rural areas; people of color; queer people; women; disabled people; and people with rare and rarely-diagnosed diseases, all of whom already face substantive barriers in obtaining informed, ethical, appropriate care. For example, many people with ME/CFS and Long COVID would need to travel out of state in order to receive care from an expert in their disease; and ME/CFS patients are often too disabled to make in-person visits and are unable to access home visits.
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Saturday, April 15 ME CAREGIVER SUPPORT CALL
https://www.meaction.net/event/me-caregiver-support-call/2023-04-15/

3:30 PM EDT (US)/8:30 PM in Great Britain & Ireland
Find the time in your time zone here:
https://www.meaction.net/event/me-caregiver-support-call/2023-04-15/

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Please join us for the third Saturday of each month at 12:30 pm PT / 3:30 pm ET for our ME Caregiver Support Call. If you would like to be added to our email list and receive meeting info and updates, please email caregiver [@] meaction.net
Please use ME Caregiver Email List in the subject line.
Join our Facebook group for more discussion

Join the video call: https://bluejeans.com/371271408

Join by phone: +1.408.317.9253 (US (Primary, San Jose))
(see all country phone numbers here – https://www.bluejeans.com/numbers)
Enter the meeting ID 371 271 408 followed by #
 
Dolphin said:
Saturday, April 15 ME CAREGIVER SUPPORT CALL
https://www.meaction.net/event/me-caregiver-support-call/2023-04-15/

3:30 PM EDT (US)/8:30 PM in Great Britain & Ireland
Find the time in your time zone here:
https://www.meaction.net/event/me-caregiver-support-call/2023-04-15/

=======
Please join us for the third Saturday of each month at 12:30 pm PT / 3:30 pm ET for our ME Caregiver Support Call. If you would like to be added to our email list and receive meeting info and updates, please email caregiver [@] meaction.net
Please use ME Caregiver Email List in the subject line.
Join our Facebook group for more discussion

Join the video call: https://bluejeans.com/371271408

Join by phone: +1.408.317.9253 (US (Primary, San Jose))
(see all country phone numbers here – https://www.bluejeans.com/numbers)
Enter the meeting ID 371 271 408 followed by #
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The calls are open to all caregivers. Caregivers of PwME, Long COVID and associated chronic conditions are welcome.
 
From an #MEAction email:

Millions Missing 2023: Watch Livestream of Press Conference

May 12, 2023
11:00 am to 12:00 pm Pacific Time
MEAction email said:
#MillionsMissing 2023 will be held at the Washington Monument on the National Mall in Washington, DC on May 12th that will feature an art installation and press conference.

This year, #MEAction in partnership with Body Politic will host #MillionsMissing 2023 to demand bold, urgent governmental action for the millions of people living with myalgic encephalomyelitis (ME), Long COVID, and other infection-associated, complex-chronic diseases.

Our protest will be an art installation that will have rows and rows of cots to represent beds at the base of the national monument as a symbolic protest to illustrate that though the pandemic is deemed over—the ending of the Public Health Emergency by the federal government—it is not over for millions of Americans who have ME and Long COVID.

We will also have a press conference that will be livestreamed at 11am PT/2pm ET that you will be able to watch, share, and interact with on our social media channels.

While we are going back to DC this year, we are only encouraging those who live close to DC to join us, as the amplification of the installation and press conference will be the best way to capture attention and safely achieve our goals.

31a266d2-964e-f4fc-abf9-bd96eeb46f70.jpg
We will be recreating a similar image to #MillionsMissing Germany’s protest in January, 2023.
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The email is here (has more info on how to get involved):


A similar announcement is also on their website:

EDIT: To save folks some time/energy I thought I'd quote the Activism From Home section of the website.
MEAction - Activism From Home said:
We want to BLOW up social media and get the attention of journalists. You will find our Activism From Home Toolkit and other social media resources here.

You can join from home by doing the following:
  • Send in a pillowcase for the demonstration (details coming soon)
  • Use this social media toolkit for images and story prompts for the day
Donate! This art installation costs money to set up and every $ donated, will be matched up to $25,000.​
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MEAction is asking for folks to decorate pillowcases to be used as part of the Millions Missing 2023 art installation -- rows of cots with pillowcases attached -- on May 12:

https://millionsmissing.meaction.net/pillowcase-decoration-project/

More information at the link, but here are some highlights:
MEAction said:
We will place rows and rows of beds by the Washington Monument to represent the millions of people suffering from ME and Long COVID.

The US government is “ending” the public health emergency, but it hasn’t ended for the millions of people with Long COVID as a result of the pandemic, and it hasn’t ended for the millions of people sick with ME before the pandemic ever started.

You can be a direct part of the art installation by mailing in a pillowcase with a design on it.

You can be as creative as you want with your design, or you can keep it simple. It is all completely up to you and the spoons available.
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MEAction said:
  • Mail your pillowcase to:
    KSE Productions
    680 Rhode Island Ave, NE #519B
    Washington, DC 20002
    USA
  • Your pillowcase package needs to be received by May 10th, 2023. Please plan accordingly to give yourself enough time to mail it. We recommend mailing it a week before OR even earlier if possible, to ensure it arrives in time.
  • We will not be able to mail your pillowcase back.
  • Anyone from any country can send in a pillowcase to be represented in the art installation.
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Here's the latest twitter post by #MEAction about their pillowcase decoration project:
Tweet from MEAction said:
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They're asking folks to use the hashtags #MillionsMissing and #PillowStory when posting images of pillowcases.

Several folks have posted that Zazzle is a good option for folks with limited energy:

https://www.zazzle.com/create_your_own_single_standard_size_pillowcase-256224603975274551

You can design the pillowcase online and then have it shipped directly to the address listed by #MEAction.

I've listed two examples below:


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And here are some hand drawn examples:

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EDIT: another good one
https://twitter.com/covidmecfshelp1/status/1649544953788342273
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Dakota15 said:
I’m biased, but there has been a ton of MN advocacy here in the last few years @SunnyK.

Happy to also see the recent news that Dr. Stephanie Grach of the Mayo Clinic (Rochester, MN) became the 21st member of the US ME/CFS Clinician Coalition (the only MN-based clinician on the list).

Local advocates know how much progress that indicates, given how far MC was as a whole behind previously in ME - and how Minnesotans felt that firsthand.

Getting to this point already has taken many efforts, and some paradigms do appear to be changing in ways for the better.

https://mecfscliniciancoalition.org/about-us/
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Sharing, being time relevant, from #MEAction today, @SunnyK (mods, feel free to move if best fit elsewhere):

"#MEAction & Mayo ME/CFS Algorithm is Live!''

'Last fall, #MEAction & Mayo Clinic applied for a grant together from the Society to Improve Diagnosis in Medicine to transform the diagnostic & treatment process at Mayo Clinic Rochester for people with ME/CFS!'

Our Director of Scientific and Medical Outreach, Jaime Seltzer, and Dr. Stephanie Grach and Dr. Ravindra Ganesh of Mayo Clinic have been working hard ever since and have our first major announcement!'

As part of our grant-funded work, we built a diagnostic and treatment algorithm for people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), for Mayo’s AskMayoExpert. And it is now live!'

https://www.meaction.net/2023/04/26/mecfs-algorithm-is-live
 
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Saturday, May 20:
Caregiver Support Call (for caregivers of people with ME (Mylagic Encephalomeylitis), Long Covid and Associated Conditions)

3:30 PM EDT/8:30 PM Great Britain & Ireland
Find the time in your time zone here:
https://www.timeanddate.com/worldcl...ER+SUPPORT+CALL&iso=20230520T1530&p1=179&ah=1

We welcome caregivers of people with chronic diseases such as myalgic encephalomyelitis (ME), Long COVID, MCAS, etc. to join our calls to connect with and support each other.
https://www.meaction.net/event/me-caregiver-support-call/2023-05-20/
 
Thursday June 15 #MEACTION GEORGIA SUPPORT CALL
https://www.meaction.net/event/meaction-georgia/2023-06-15/

People from around the world are welcome.

1 PM EDT/6 PM in Great Britain & Ireland
Find the time in your time zone here:
https://www.timeanddate.com/worldcl...RGIA+SUPPORT+CALL+&iso=20230615T13&p1=25&ah=1

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. Topics will vary from month to month and no preparation is
required. Come as you are for this virtual meeting!

Please remember to mute yourself when not speaking to avoid background
interference for those of us with sensitive ears. To do this, tap the
mic icon or press *4 to mute and unmute from your phone.

*Topic:* MEAction Georgia Support Call
*Time:* 1pm EST

------------------------------------------------------------------------

*Follow the link below to join via computer:*

Meeting URL

https://bluejeans.com/343466060 <https://bluejeans.com/343466060>

Meeting ID

343466060

 
Latest email from #MEAction, subject line: "Why We Keep Telling the Story of ME to the Press"

https://mailchi.mp/meaction/nih-comes-up-short-once-again-2270577

This mail discusses work #MEAction has done to get news coverage with accurate information about ME/CFS and has links to quite a few stories. There's a special shout-out to their New Hampshire chapter for pitching a story that made the front page of the Boston Globe.

Also includes a request for donations.

Here's a short extract (with some extra line breaks added):
#MEAction email said:
Our press work continues to drum a strong beat as we tell the story of ME everyday to the media. We will continue to fight for our community’s decades of expertise living with, treating and researching ME to be heard, and integrated into our government’s Long COVID response.

We refused to be erased from the story, or from the response to post-infectious disease.

Over the past several months, we have been busy telling our story about the #MillionsMissing to the press. We’ve spent long hours educating journalists from the Washington Post, Nature, Stat News, Muck Rock, and National Geographic about the nature of post-exertional malaise (PEM), and why trialing exercise interventions for Long COVID is a terrible idea, as the majority of the population has PEM.

We know that the fate of Long COVID research has the potential to have a massive impact on ME.

Most recently, we’re thrilled to see the Boston Globe run a front-page story about ME/CFS and Long COVID, thanks to the hard work of our New Hampshire State Chapter, which pitched the story and directed journalists to ME experts.

(Read article here without paywall.)
...

The amount of work that it takes to educate journalists about ME - and to ensure that ME is not erased from the Long COVID story - is enormous! If you are able, we ask for your financial support to continue to make this work a success.
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Article written by Ben HsuBorger:
”Bed activism” at the Washington Monument & A Politics of Care

https://www.meaction.net/2023/06/30/bed-activism-at-the-washington-monument-a-politics-of-care/

I’ve been involved in planning many #MillionsMissing actions during my time with #MEAction, but for me, protesting at the Washington Monument this past May 12th was a different—even surreal—experience.

The installation of cots was so large that I could see people coming across the mall to see what it was. I would tell them that the beds symbolized the millions missing due to ME and Long COVID, but my favorite part was explaining the personally decorated pillowcases with custom messages that sick and disabled people across the country had sent in. I would see a mix of confusion, surprise and curiosity flash across their faces as it dawned on them that these people were missing, but not gone, (though some have lost their lives) and were sending messages to them through their pillowcases.
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I thought I'd post a reminder that there's a calendar for MEAction events on their website:

https://www.meaction.net/act-events/

This might be useful for those who used to check the MEAction twitter account. As of yesterday you must be logged in to see tweets which means access is blocked for anyone who does not have a twitter account.

That twitter restriction is supposed to be temporary, but who knows?
 
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