ME Awareness Day / Week / Month, May 2023

World ME Alliance on Twitter

"We are thrilled to be interviewing @KaloyanKKamenov at the @WHO for #WorldMEDay 2023. Get ready to watch as it goes live at 15:00 BST on Friday May 12th. Thank you to Dr Kamenov for committing to ongoing engagement with the ME community."

Link to video

"Dr Kamenov works in the WHO Disability Programme and is first author of the Global Report on Health Equity for Persons with Disabilities. We will talk about his work, the next steps @WHO are taking towards health equity, and WHO's support for the ME community on #WorldMEDay."

 

https://www.cdc.gov/me-cfs/resources/awarenessday.html

The page was also linked in the weekly email update from the CDC which also tweeted about the day

 

Sheffield ME & Fibromyalgia Group on Twitter:

"Join us online/in person at @CircleSheffield on Friday May 12th for our #WorldMEDay celebration! 12.30 Annual General Meeting 1.15 Free Lunch 2pm adambeyoncelowe [@twitter] performance 2.30 NICE Guidelines interview Q&A SIGN UP: https://t.co/E7rsImu7VB

@adambeyoncelowe

 

Michael A Osborne on Twitter:

"This is Alem Matthees, from my home town of Perth. Alem has ME/CFS, and he filed the FOI request that busted open the horrific PACE trial, the study that falsely claimed exercise as a treatment. That fight came at great cost to Alem's health—he now depends on others for his care. " to

Katy B on Twitter:

"Eternal gratitude to Alem for all that he's done for the #MEcfs community it's heartbreaking that it came at such a great cost to him

It's his Birthday tomorrow, #pwME from around the [world] are thinking of him; send our best wishes & our gratitude, we can't thank him enough 1/2“

 

Not specifically about ME Awareness Day but as it was posted today...

Anil van der Zee on Twitter

"Since I've been living isolated from the world since 2013, and from 2015, one visitor per year has not been uncommon. I've decided to film my current life with M.E. Not that my days are that exciting, but I often get questions about how I get by. How"

"do I eat, clean, go to the toilet, etc. Both from my non-ME friends, people from the patient community and medical professionals. It might give a unique insight into what the disease forces you to do. I've tried not to hold back on any details, including the private ones, and"

"show a step-by-step guide through my day. I hope you'll enjoy watching it. There are English & Dutch subtitles included. I advise you to turn them on to understand my English. Groetjes, Anil"

And Dave Tuller has posted about Anil's video here, https://virology.ws/2023/05/12/trial-by-error-a-day-in-the-life-of-anil-van-der-zee/

Mod note: We have made a thread specifically for the video here:
https://www.s4me.info/threads/video-a-day-in-the-life-of-anil-van-der-zee.33337/

 

The very good free CPD course on ME/CFS created by a team led by Dr Nina Muirhead https://www.studyprn.com/p/chronic-fatigue-syndrome has been plugged today in an email by StudyPRN
The email also links to this new blog post
https://www.studyprn.com/blog/medic...ic-encephalomyelitis-chronic-fatigue-syndrome

 

Here are two videos posted by MEAction on their youtube channel.

This first one is a very short video (2 1/2 minutes) that shows the cots on the lawn with several close-up shots of pillowcases. You can leave the sound off - no dialog, just some background noise (wind, airplane, muffled voices).

https://www.youtube.com/watch?v=IFbscw_BTsQ

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This is the full #MEAction press conference:

https://www.youtube.com/watch?v=HuyeHvM8Usc

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The video quality is not very good, but the sound seems fine. I've only watched a few snippets of it. I do plan to watch a few of the speeches at some point.

 

Morgan Stephens
@morganstephensa

I've been asked to share my Long COVID speech transcript from yesterday. So, voila!

Excerpt from speech:

 

Washington, DC pictures with lots of pictures of pillowcases.
https://meaction.smugmug.com/MillionsMissing-2023/

I made a pillowcase with the help of a friend (and Zazzle). I'm so happy to see that it made it there and was used in the art installation.

 

I saw a great response to a CDC tweet about ME/CFS Awareness Day:

Text:

"We don't need the CDC to light its campus blue. We need them to educate doctors about ME, to track Long Covid and ME, to stop erasing the pandemic. We need them to prioritize disabled lives through policy, not performance."

Link to tweet below (plus a screen shot in case the tweet or account gets deleted, or goes private):

 

Brooke Keaton has posted a transcript of her speech from the May 12 Millions Missing event on Medium. She is a Covid Long Hauler.

Code:

https://medium.com/@sonora.smile/good-afternoon-18c8fa159b0c

Her speech is one of the few that I watched - very moving!

I also watched part of Jaime Seltzer's speech and it was also very good. Looking forward to a transcript from that speech, too!

 

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Excellent article by Ryan Prior in Psychology Today.

COVID Long Haulers Protest in DC: "Pandemics Are Chronic"
As the COVID-19 public health emergency ends, patients rally for a cure.
Posted May 16, 2023

https://www.psychologytoday.com/us/...g-haulers-protest-in-dc-pandemics-are-chronic

 

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