No doubt most of us are still recovering from ME awareness day, so this is a short post to share a flavour of the day. The great beauty of the Millions Missing protest is that everyone can join it at some level. Due to the very nature of the illness, few are able to attend a protest in person. However, many sent their shoes to ‘stand’ in their place, and many more did virtual protests by placing their shoes on their doorsteps and sharing #MillionsMissing from their beds. It’s impossible to keep up with twitter at a protest. The physical protest may well be the impetus but it’s the message that’s so important and its impact can only be realised from working together whether it’s on the streets or from our homes and beds.
It was only 8 months since our last protest, but it feels as though the ME community is gaining momentum, confidence and impact. I was particularly keen to protest in some form this year to give a final push for biomedical research ahead of the renewal of the NICE guidelines (due to be reviewed this summer).
Catherine Hale gave a fantastic speech explaining the neglect people with ME have had to endure, not just because of their illness but in the ‘treatment’ they receive. Do have a read of the full transcript here. PACE continues to be a dirty word in ME politics and the implications are entrenched in our struggles.
You can also find out more about the StopGET campaign and sign the global petition at StopGET.org (NB you can sign this even if you’ve already signed the UK petition)
I was really encouraged by the level of public engagement on the street this year: some took leaflets; some stopped to chat about someone they know with ME; some wanted to know more; many stopped to look, read, take pictures, check out the Millions Missing hashtag, and there were quite a few tourists who politely took a leaflet and must have wondered what on earth it was all about! Our short spurts of chanting even gained the attention of those on the open top busses!
It’s always encouraging when healthy allies endorse our cause and with the help of politicians, actors and a whole army of Millions Missing we did manage to trend on twitter with #MEawareness !
London Live TV interviewed a few of us throughout the protest and gave me some helpful questions to answer! Other than than, yet again, our main success was confined to social media. Maybe it’s because we coincided with the breaking news of the NHS cyber attack and were in the middle of a General Election campaign, or maybe we are still up against a media that doesn’t want to hear our cries of neglect and calls for recognition. One thing is for certain, we are not going anywhere and we will continue for as long as it takes.
However, it was encouraging to see that Scotland had a particularly successful ME awareness day and received great coverage about the protest on BBC radio, the press and even secured a debate in the Scottish Parliament.
It was great to have my husband with me for this protest. I also put him to work to help promote #ME awareness by doing a video blog of what it’s like living with someone with (now mild/moderate) ME. It was my most successful post of all time and reached across 26 countries (which of course I’m delighted about-all for the greater good!! ;-)) If I had known it was going to be that successful I would have prompted him with a few extra things to say!!
For those that couldn’t be at the protest in person, I’ve put together a short montage of the day. Hopefully this will give you a bit more of the ‘feel’ for the protest in London:
I’m hoping that by next year NICE will have scrapped GET/CBT from it’s guidelines; PACE will be retracted; and that there will be significant funding for biomedical research. If not, I’ll be back!
Being so heavily involved in the Millions Missing protest meant I missed out on protests in other countries. Other ME charities and organisations were also planning lots of other great awareness raising events with the general public, GP’s and medical professionals. I’m a collaborator and my protest was very much to support the ongoing work that the vast majority of our charities are already doing and calling for. So, how was ME awareness day for you? I would love to hear your highlights and for you to showcase what you were involved in? If you are new to ME, what struck you most? (either about the illness or the awareness campaigns)
Special thanks must go to L.A Cooper who worked so hard in organising the London protest, ME Action Network who helped make all the global protests happen, and of course the Millions Missing all around the world who collectively helped to bring us out from the forgotten shadows.