ME Awareness Day / Week / Month, May 2023

[Andy]

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."

 

[Tom Kindlon]

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

 

[MSEsperanza]

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

 

[MSEsperanza]

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“

 

[Andy]

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/

 

[Tom Kindlon]

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

 

[Tom Kindlon]

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

 

[Trish]

USA Washington DC #MEAction

Long COVID & ME/CFS Communities to Demonstrate on National Mall:
Watch the Press Conference

Washington, DC – The ME/CFS and Long COVID communities will demonstrate today with the installation of 300 cots on the National Mall to represent the millions of people missing from their lives due to post-infectious disease. We are the #MillionsMissing.

Patients from across the country have sent in hand-made pillowcases to represent how they are still sick and still fighting, to be displayed on the cots. #MEAction and Body Politic are organizing the demonstration.

WATCH the press conference at 2 p.m. ET via livestream on our social media accounts: Twitter, Facebook, YouTube

 

[ahimsa]

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).

​

This is the full #MEAction press conference:

​

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.

 

[Laurie P]

Morgan Stephens
@morganstephensa

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

Excerpt from speech:

This was two and a half years ago, when public health officials weren’t going on cable news to talk about a post-viral illness that was leaving people cognitively and physically impaired. I was told by a doctor that, “as a journalist I know too much,” suggesting I was creating a false reality of symptoms in my mind due to covering COVID. I was too brain fogged to even fight back against his assertion. How could I have fallen so far, so fast? Just a month before, I was editing videos for a primetime news show on CNN. When I opened my laptop, the vertigo increased and the room tilted. The screen triggered what felt like a metallic churning pain in my brain. I tried to walk myself through what I knew how to do. I couldn’t. In fact, I could barely put the thoughts together to hold myself up, look into the fridge and pull out the ingredients to make myself a meal. This was not because I knew too much. This was not because I had conjured up an illness based on what a doctor deemed was my anxiety about the pandemic. This was the actual consequences of the pandemic.

 

[Laurie P]

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.

 

[ahimsa]

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):

 

[ahimsa]

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

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!

 

[Laurie P]

Text of Tweets

Liz Burlingame
@LizMEActGA

On May 12 the @CDC_NCEZID promised to “light up” their Atlanta campus blue in honor of #MECFS Awareness Day. THIS is all our local ppl could find... @CDC_NCEZID What Happened?! #pwME deserve an explanation & apology.
@meactionga

It's such a perfect metaphor for the @cdc’s lack of accountability. Someone @CDC_NCEZID literally failed to turn on the lights. And ppl with #MECFS are still in the dark. #StillSickStillFighting
@meactionga
@TomKindlon
@ThereseARus
@ErinMariLee
@dSavannahCreate
@MEActNet

 

[Laurie P]

Text of Tweet

Massachusetts ME/CFS & FM Association
@MassMECFS

MA bridges were illuminated in blue to honor World ME Day. Thank you #MassDOT for helping to recognize this importance of ME/CFS. #massmecfs #WorldMEDay #MECFS #MyalgicEncephalomyelitis #mecfsawareness #chronicfatigue #chronicfatiguesyndome

 

[Laurie P]

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

“We need to build a scientific, political, and social structure that differs not just a little from the current state of things, but to take the kind of care of one another that is nothing less than revolutionary,” Seltzer said.

Research for post-viral diseases is chronically underfunded. Seltzer cited statistics arguing that to reach parity with other diseases, the National Institutes of Health would need to increase funding 20 times higher than current levels.

“People with epilepsy, AIDS, and autism have all had to fight for their lives. Despite popular conception, scientific progress isn't an engine that runs on its own. It needs all of our fuel—our fire—to make it move,” Seltzer said.

Translating Protest Into Policy

One of those speakers was Gabriel San Emeterio, an activist and faculty member at CUNY’s Silberman School of Social Work.

Emeterio recalled his own experiences advocating in the HIV movement and highlighted how the HIV community galvanized to win passage of the historic Ryan White Act. That law, passed in 1990, as part of the federal HIV response, now authorizes programs totaling more than $2 billion delivering life-saving care for HIV.

And just as activism led to establishing an NIH Office of AIDS Research in 1988, Emeterio argued that the NIH should also create an office centralizing research on long COVID, ME/CFS, Lyme, and post-infectious diseases.

“Patients must be leading the charge on research into deciding how the research funding is allocated, and which clinical trials to prioritize,” Emeterio said.

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

 

[Laurie P]

Text of Tweets

#MEAction Network
@MEActNet
Three weeks ago, #MEAction’s art installation for #MillionsMissing 2023 took over a grassy area on the National Mall at the base of the Washington Monument. The rows of cots, red blankets, & personalized pillowcases created an powerful image. Slideshow: https://bit.ly/MMPCSS

Whether your story was told with talented artwork and creative design or a single sharpie with a vulnerable revealing of details, it matters! You matter. Your story deserves to be told. Thank you all for your vulnerability and sacrifice. #pwME #pwLC #MECFS #LongCovid

We all have unique stories, but we can create change when we come together as one large, diverse community to accomplish a goal. The impact of this art installation is still reverberating. Thank you to everyone who played a part in making this art installation a success.