Discussion in 'Advocacy Projects and Campaigns' started by Michiel Tack, May 11, 2020.
Trial by Error by David Tuller - Today is May 12th and Everyone's Missing
Much is on hold–but people who have been sick for years or decades are still sick and still waiting for effective treatments. If investigations of the long-term sequelae of COVID-19 can help shed light on the mechanisms behind the development of chronic disease after an infectious illness, perhaps the current devastation will yield future dividends for ME patients. In any event, on this particular day of awareness, I will allow myself to hope that will be the case.
Feels like screaming into a particularly empty void today.
The only coverage I have seen so far is the one (from India?) where they insulted us. Nice.
I had very low expectations and I'm still disappointed. Oh well.
That was nice. It doesn't look good for Markey, though. He is trailing in his nomination race and would likely retire next January.
Gutted that due to technical difficulties the #MEAction UK #MillionsMissing livestream couldn't work today, but we went ahead and recorded it anyhow, it's now up on facebook so get watching:
I think there's some super powerful parts in it, and am so grateful to all the speakers who joined us and the team of us who kept it going despite the tech problems.
Here's the final full line-up of those who spoke:
-Carol Monaghan, MP
-David Green (director of the Florence Nightingale Museum)
-Stuart Murdoch from Belle and Sebastian
-Catherine Hale and Dr Anna Ruddock from the Chronic Illness Inclusion Project
-Dr Nina Muirhead, surgeon and ME educator
-Professor Chris Ponting, Chair of Medical Bioinformatics, University of Edinburgh.
-Vicky Foxcroft, MP and Shadow Minister for Disabled People
-Hannah Sweeney, pwME
-Laura Smith, pwME
-Ellie Rushton, Ally
-Dionne Joseph, mum and carer of Gigi
We'll work over the coming days (when we have some energy!!) to create clips of certain bits, so feel free to add suggestions of which parts spoke to you most here and I'll keep an eye (thought I already have some bits in mind, such as the end of Nina Muirhead's interview)!
Wow, you've done brilliantly organising all those speakers. A pity about the livestream, but in the long run the recording is more important. I haven't watched it yet, but just wanted to say well done a and thanks to all concerned.
Millions Missing France are posting a lot on social media: Facebook, Twitter and Instagram. We've launched a YouTube channel with videos from both severe and mild/moderate people with ME.
For example, a video showing before/with ME with a song written by one of our members:
On Instagram, we're featuring people doing #MECFSChallenge aka #JeDisEM: https://www.instagram.com/millionsmissingfrance/
Personally, it's my first year advocating for ME Awareness Week. To be very honest, it does take a massive amount of energy and it feels like screaming into the void: no press coverage, no MPs backing us up. But ME is so poorly known in France that I'll be glad if anyone sees our posts.
The national association, Association française du syndrome de fatigue chronique (ASFC), created a group on the running app Strava and they had over 100 (healthy) participants running a total of 5409km.
We're very happy to see things moving forward rapidly in Germany (and Austria?), congratulations to everyone involved!
I just saw this version of Truth Hurts (song by Lizzo), with lyrics rewritten for ME, and I think it's pretty great:
Some links from Germany
The main action was that the health minister and more politicians got postcards from pwME. There was also some great media coverage.
You can find a (non exhaustive) list of media reports, videos, statements, press releases etc. at the bottom of this article by the German Association for MECFS: https://www.mecfs.de/internationaler-me-cfs-tag-der-einsatz-geht-weiter/
Statement by MP:
Statement by MP:
Trailer #MillionsMissing Germany:
Video by family members and partners (with English subtitles):
Emerge have been sharing a lot of stuff on social media, I particularly loved this song. Shows there is one "body system" unaffected in ME after all: our sense of humour.
Vogue retweeted this article from 2018
There was a short interview with Olivia Blake MP as part of the Sheffield event where she talks about why she has become involved with the APPG on ME - personal experience - and also what the APPG are going to be focusing on. It starts about 34:40 :
To wind down after an intense #MEAwarenessWeek and #MillionsMissing - Sheffield ME & Fibromyalgia Group are putting on a LIVE MUSIC FESTIVAL
There's a whole lineup of musicians, including people with ME, playing until 10 pm this eve!
And a massive thank you to Harriet Rose for organising this.
Sheffield groups thread about this if anyone fancies retweeting!
I'm not sure if this has been posted but Olivia Blake MP has written to NICE following the Sheffield ME & Fibromyalgia Group 'Millions Missing' event:
Research Round-up: our work over the last year
#MillionsMissing Virtual Choir sings "You've Got a Friend."
Separate names with a comma.