#MillionsMissing Glasgow on 12 May, 2019, was a huge success, and took place in glorious sunshine which is fairly unusual for this Scottish city! A crowd of around 400, many of whom had travelled from across Scotland, heard people with myalgic encephalomyelitis (ME) speak about their experience of the illness. There was music from local performers, the singer Ross McGuire and the choir Dynamic Meladies. Two pandas roamed the crowd to make people aware of the fact that there are more pandas in Scotland than there are ME specialists (there is only one ME nurse in Scotland).
Hundreds of shoes with messages were laid out on the grass and a double bed with a red duvet cover visually demonstrated that 25% of people with ME are housebound or bedbound.
Key speakers included two Glaswegians: Carol Monaghan, MP and Stuart Murdoch of the band Belle and Sebastian. The third speaker, Professor Chris Ponting, had travelled from Edinburgh, and emphasised the need for research into ME.
Carol Monaghan, the Glasgow MP who is leading a campaign at Westminster to improve treatment of people with ME in the UK, highlighted how much impact people with ME were having when they contacted MPs. She encouraged everyone to get in touch with their local representative and said “best of all, go and see them or ask if they will come to see you”.
Professor Chris Ponting, Deputy Chair of the CMRC and Chair of Medical Bioinformatics at the University of Edinburgh, gave grounds for hope in his assessment of the current position in research. He said “the scientific tide is turning and now is the time for scientists to come together and act”. His speech included a rousing rebuttal of those scientists who claim they are deterred from carrying out ME research due to abuse: “Can I state categorically that ME scientists are not being harassed by the ME community. We are listening to legitimate questions and concerns about science.”
Stuart Murdoch, lead singer of Scottish indie band Belle and Sebastian performed with some of his band. Included in their set was ‘Nobody’s Empire’ a song that Stuart explained was his “ME story”. He said that it had taken him twenty years to write a song specifically about ME and discussed in an interview before his performance how it had taken him many years to go public about having ME.
The day ended with a mass lie down – a demonstration in solidarity with the 25% of people with ME who are home or bedbound – and a closing speech from Gillian Grant from #MEAction Scotland who led the organisation of this fantastic action. The concluding song was ‘Can you hear me?’ written by Alex Faye, a person with ME, for #Millions Missing. This was sung by #MEAction volunteers and the crowd: it was extremely moving and had one or two in tears.
Articles in the local evening paper, the Evening Times and the national paper, the Herald focussed on the key messages of the need for research and support. Radio Clyde came to the event and a reporter recorded a number of interviews during the afternoon, which were on their news bulletins.
A huge thank you to all those who supported #MillionsMissing Glasgow either in person or online: it was fantastic to see so many people there from all over Scotland and to have such a positive response to the Facebook live streaming!
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