#MillionsMissing 2020 UK

[Sly Saint]

email from #MEAction

With support from a professional filmmaker, we are putting together a short film for #MillionsMissing 2020 in the UK. If you have ME, we want YOU to be part of it.

Whilst these are incredibly trying times for the world, we know our community still has a story to tell that is relevant to what is going on.

We’ve put together a script, and so now we ask, can you:

1. Read the script
2. Find the lines that are relevant to you
3. Film yourself speaking them out loud
4. Upload your video here to be part of the film

The deadline for uploading your video is Monday 27th April.

At the beginning of your video please tell us your name and when you were diagnosed with ME if you want to be credited at the end of the film (however this may not be possible depending on the number of submissions).


Read the script
“I got a virus.”
“I didn’t die.”
“But I never recovered.”
“1 year later.”
“7 years later.”
“20 years later.”
“[Insert the number of years you’ve been ill] years later.”
“I’m still housebound.”
“I can’t work.”
“I can’t play with my kid.”
“I am now diagnosed with the chronic illness myalgic encephalomyelitis, or ME.”
“My GP recommended I increase my activity levels.”
“My specialist told me the national guidelines recommended graded exercise therapy.”
“This made me worse.”
“I went from being able to walk down the street, to being reliant on a wheelchair.”
“I wish I’d allowed my body the time it needed to rest, instead of pushing through.”
“I wish the recommended therapy hadn’t made me, and thousands of others, worse.”
“The guidelines are now being rewritten, but until they’re finalised this harmful recommendation of graded exercise therapy remains in place.”
“We need change now.”

(We will be working with other professionals to fill in this central section - it will discuss some of the history of disabled people’s advocacy, with a focus on the bicentennial of Florence Nightingale’s birth, who herself spent many years bed and housebound whilst continuing the fight for improved healthcare. We’ll also look at some of the specifics around what we are working towards - research into ME and an end to harmful treatments.)

“I want to… [insert your own short want here, no more than 4-10 words. Examples below]”
“I want to sing and dance again.”
“I want to go back to work.”
“I want to play with my kid.”
“I want to leave my bed.”

“If any of these are going to happen.”
“We need treatment that helps not harms.”
“We need biomedical research to better understand this disease.”
“We don’t want anyone to go through what we have been through.”
“We got viruses, from which we didn’t recover. We don’t want that to happen to you.”



Tips and tricks for taking a good video!

• Important: Hold your phone or camera horizontally and take the video in landscape not portrait.
• Try to choose a plain background if you can e.g. a wall, or your bed.
• Put your phone or camera on a stable surface (table, shelf etc) so that the film isn’t wobbly, at eye level if possible. Or if you can’t, then consider asking someone else to hold the camera to film you (as long as this doesn’t counter social distancing rules!)
• Take your time - we can cut out any silences at the beginning, it’s better to speak clearly than to rush.
• Try to make sure there isn’t any background noise - close windows, make sure no-one's about to flush the loo in the next room, that sort of thing!
• Natural sunlight is better (but don’t worry about this if you are sensitive to light).
• Try to ensure any light source is in front of you not behind you. E.g. don’t position yourself with your back to a window, instead position yourself so that the light from the window hits your face.

Upload your video here
Remember the deadline for getting us your video is Monday 27th April

Any questions? Email us at uk@meaction.net

Disclaimer: By uploading a video to us you are giving #MEAction permission to use it in this and future campaigns indefinitely. #MEAction will have the right to edit and cut your video as they deem necessary. You hereby release any and all claims against any person or organisation utilising this material for marketing, educational, promotional, and/or any other lawful purpose whatsoever. Your video will not be shared with 3rd parties. If we receive a large number of videos we may not be able to include every person, though we will aim to. We can’t get back to everyone who sends in a video, but if you have a specific question please do email us at uk@meaction.net

You can also read the script and the tips here.

Thanks for your continued support. We will have more details with regards to our #MillionsMissing virtual activities very soon!

Stay home and stay safe,

Espe Moreno
#MEAction's UK Coordinator
(on behalf of #MEAction UK)

 

[Cinders66]

I’d like to know what specifics around research #MEAction U.K. are ‘working towards”. I don’t know what number #millions missing this is but I do know I’ve spent many years in bed waiting for action and real progress on research (real progress meaning a sizeable investment in total, from somewhere, year on year across a range of key areas of potential importance in ME). This new decades for me been the hardest of my life and I just don’t know how much longer I can wait (and rot) until we get things properly started and set up in the UK.

I also have concerns with tying ME in with Florence nightingales illness. Is it the case she was very productive from her bed? this would be quite atypical for house or bedbound ME so I’m not sure if the parallels are good to draw, is it known if she probably had ME or why she was in bed? However with the covid thing and the London nightingale hospital etc its certainly very topical ....

the lines of the video look very good , I just would like to know the concrete targets on research and how it’s plotted to get there.