ME Awareness Day / Week / Month, May 2021

Cornell Center for Enervating NeuroImmune Disease: Dr. Maureen Hanson provides a Pecha Kucha for ME/CFS

"A pecha kucha ("chit-chat" in Japanese) consists of 20 images that are displayed for 20 seconds each. The image change automatically as the presenter i speaking. Thus, the speaker has 400 seconds to convey the information"

https://www.youtube.com/watch?v=dxmvRj9nvY0

 

That looks to be a quote from this article from 2019, https://meaustralia.net/2019/05/08/a-mothers-story-alem-matthees/, so hopefully his health has improved.

 

The total lack of media coverage is really disappointing, especially given the efforts are larger than ever. So far it looks even less than last year, which was very disappointing. Medicine's inability to learn from Long Covid is just plain absurd, I've never seen anything like this, even someone eating their own head sounds normal compared to this.

It would be easy to think there's a conspiracy out there but, no, seriously humans can just be so damn awful to one another. Even in the best of circumstances.

Thanks to everyone who gave it all again. A fight without any allies is more a statement than anything. In the end it's all we can do: state that we exist. But it's really adding up to look the maximum possible worst in hindsight. No one rose up to help, even the most minimal of efforts.

And of course a dishonorable mention to everyone pushing the BPS ideology who pretend to help us. Not a single one of them have ever promoted any awareness. They don't believe a damn thing they say and never meant to help anyone. They show it best here, staying completely silent. Then again, just as expected.

 

Apparently, today has been ME Awareness Day, a fact of which I have remained totally ignorant all day

 

You're just in time for the international PEM day.

Well done everyone who contributed to the international awareness day!

 

Alem's mother (and carer) participates in some of the Australian ME/CFS groups on social media.

Unfortunately she said yesterday that Alem is still extremely ill. She has managed to tell him about some of the birthday wishes and posts about Alem that she has seen online at least.

 

There has been some coverage in Germany. But mostly the same loyal journalists who have written in the last year(s).

Newspaper
https://m.tagesspiegel.de/gesellsch...nkte-mehr-aufgrund-von-covid-19/27180710.html

https://www.berliner-kurier.de/berlin/die-vergessenen-kranken-li.157807
Extended version: https://www.berliner-zeitung.de/ges...=Social&utm_source=Twitter#Echobox=1620723766

https://www.berliner-zeitung.de/ges...zlich-der-akku-des-koerpers-versagt-li.155503

TV
https://www.zdf.de/verbraucher/voll...ndrom-als-post-covid-folgeerkrankung-100.html

One of the big political talkshows (that's a first time)
https://www.zdf.de/gesellschaft/markus-lanz/markus-lanz-vom-12-mai-2021-100.html


Radio
https://www1.wdr.de/radio/wdr5/sendungen/neugier-genuegt/feature-longcovid-100.html

https://www.google.com/amp/s/www.br...pfungssyndrom-symptome-und-behandlung,RJvtyV4

Plus a few politicians:
https://twitter.com/user/status/1392579873676398601


https://twitter.com/user/status/1392553628448313346


https://twitter.com/user/status/1392531645014716416


https://twitter.com/user/status/1392479201312350211


Sadly the minister for education and science had a covid press conference and couldn't remember the name and called it "sleeping sickness". "Fun" fact. Schlafkrankheit (sleeping sickness) made it into the Twitter trends. #millionsmissing not.

We will see what happens on state level after the #millionsmissing Germany postcard campaign.

Edit.
On the info screens at the big train stations there was a 15 second animation saying it's ME/CFS day.

 

Dan Wyke on Twitter: "Prayer for the Day on BBC Radio 4 this morning focused on #MECFS and #MEAwarenessDay. https://t.co/DQqffBTOIk" / Twitter

 

Michiel Tack on Twitter: "1) Today is ME/CFS Awareness Day. Michiel has been sick for 13 years and Evelien for 23 years. #MillionsMore #MEAction #YouAreNotAlone #MillionsMissing #MEAwareness #MEAwarenessDay #MECFS https://t.co/9QOr88oCJi" / Twitter

 

Article:
MEAction appeals for governments to respond to ever-growing crisis

https://onthewight.com/meaction-appeals-for-governments-to-respond-to-ever-growing-crisis/

 

Walter J. Koroshetz on twitter:

#NINDS joins #CDC 's message on #MEAwarenessDay. There is a tremendous need for a greater research effort and improved clinical care for those suffering from #MyalgicEncephalomyelitis/Chronic Fatigue Syndrome. https://cdc.gov/me-cfs/resources/awarenessday.html…;

 

https://twitter.com/user/status/1392678522737528835

 

Well done and thanks to Gavin & Edna for telling their story today in the Irish Independent* (it covers 1.5 pages!)
https://www.independent.ie/life/hea...og-and-memory-loss-is-my-normal-40400140.html

Among other things, it plugs her fundraising event, "A mother's walk for ME/CFS research" for our research fund https://www.idonate.ie/fundraiser/11394409_a-mothers-walk-for-me-cfs-research.html

Already some donations have come in

The Irish Independent changed it recently and if you register you can get 3 Premium articles for free per month. It would be good to get some hits to show to the Irish Independent that there is interest in the topic. Also, there might be a "most popular" article list somewhere.

*Ireland's largest selling newspaper

 

Just adding a few more videos from The ME Action Network which I think has not yet been shared in the thread.

Medical Education with dr. Nina Muirhead and midwife Hayley Valentine-Howard
"Dr Nina Muirhead talks about her new module that aims to provide up-to-date education to GPs. Hayley Valentine-Howard shares what the best professional care should look like for pregnant women living with ME and what needs to be done to educate health professionals."

https://www.youtube.com/watch?v=Y_P0MY7IPIA

Award winning authors talk about living and writing with ME
"Penny Joelson, Marcus Sedgwick and Claire Wade talk about their experience of ME and being creative when living with ME for #MillionsMissing 2021."

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

Behind the scenes with #MillionsMissing organisers
"Interviews with our dedicated #MillionsMissing organisers who share their highlights of the event and hopes for future #MillionsMissing. We speak to Jules Edenburgh from Southampton, Carolyn Leary from Sheffield, Chantelle Parry from Gloucester, Denise Spreag from London, Janet Sylvester from Edinburgh and Charlie Wainwright from Leeds."

https://www.youtube.com/watch?v=raQEPmCa4Qo

Behind the scenes at the James Lind Alliance Priority Setting Partnership
"Led by people with ME/CFS, their carers, and clinicians, the James Lind Alliance ME/CFS Priority Setting Partnership aims to identify the Top 10 research priorities to influence research funding in the future. Listen to staff, patients and carers as they explain why they take part, what happens and what they hope will result from the process."

https://www.youtube.com/watch?v=okn8Ham_tkM

Speaking from the heart with Ron Davis, Janet Dafoe and Linda Neale
"Janet Dafoe and her friend Linda Neale share memories of Whitney Dafoe as a young boy and man. Stuart Murdoch takes us outside to enjoy nature and moments of peace."

https://www.youtube.com/watch?v=Qq52ODlWyuY

 

mary dimmock on Twitter: "@NINDSdirector - Yes, we've known this for years. But fixing the stigma, misinfo, lack of research & clinical community neglect/mistreatment requires your proactive leadership & a concrete, fully funded, national plan to fix it. Unreasonable to expect #pwme to fix these issues" / Twitter

 

https://twitter.com/user/status/1392417563359973376

 

https://www.youtube.com/watch?v=W3SAOitZHgM

 

"Where on earth do I begin?

I mean, what does one say when an idea they had during the poorliest and hardest time of their life is so well received that it raises thousands and thousands of pounds in a day?!

How do you thank a group of people who gave so generously, both their money and their incredibly precious energy, to make Blue Sunday 2021 a success? I’ve been thinking of this for days and still have no idea.

For those who haven’t seen, the fundraising total is currently just over £17,000. Seventeen thousand pounds! With donations still coming in every day."

https://the-slow-lane.com/2021/05/20/where-on-earth-do-i-begin/

https://twitter.com/user/status/1395290054239653888

 

"I made this film for the National Videogame Museum Animal Crossing Diaries archive. The aim of the archive is to "collect histories of those who have been playing and living with ‘Animal Crossing: New Horizons’ during the lockdown period." My film also adds in the perspective of someone recently diagnosed with M.E. and I hope it will help to spread awareness of the illness. It is the first film I have ever made so I hope you enjoy watching it!"

https://meandmyisland.co.uk/acnh-film/

https://twitter.com/user/status/1395092176602910721