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Mass Observation Day aims to raise awareness of M.E. sufferers across the UK

Discussion in 'General ME/CFS news' started by Sly Saint, May 10, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Interesting that this is another AfME initiative this time with University of Sussex
    The annual call for day diaries by the Mass Observation Archive will take on a special significance this year, as it seeks to raise awareness of a debilitating neurological condition documented by previous participants.

    Every year the Mass Observation project calls for people from across the UK to record everything they do from waking up to going to sleep at night, repeating a process first completed on the day of George VI’s Coronation in 1937.

    The resulting diaries provide a glimpse into the everyday lives of people across Britain, and have become an invaluable resource for those researching countless aspects of the era.

    This year the Archive- part of the University of Sussex's Special Collections at The Keep - is working in partnership with Action for M.E. to record people’s experience of living with the chronic neurological condition myalgic encephalomyelitis (M.E.) on 12 May, as part of M.E. Awareness Month."


    see also:


    (only speculating here, but this is Colin Barton territory)
    (BTW: anyone know what happened to this research from last year http://www.theargus.co.uk/news/15525122.Volunteers_needed_to_help_new_research_into_ME/)
  2. Andy

    Andy Committee Member

    Hampshire, UK
    While I don't think this is necessarily a bad idea, i would ask the question: what is the one day of the year when ME sufferers might make more of an effort, and to hell with the consequences, to join in with activities with others? Would it be the day that the vast majority of the Millions Missing events are taking place? Personally I think it would be. And therefore this stands the chance of recording an unrealistic view of what a typical day might be for your average sufferer.
    Simon M, Wonko, Snowdrop and 3 others like this.
  3. MEMarge

    MEMarge Senior Member (Voting Rights)

    This idea was raised by someone in the Crowboro group who works part-time in Brighton. She had heard about this and I suspect she contacted ME charities to advertise it.
    If it catches on I think the fact that many people are at a demonstration to highlight their illness, while others are bed/housebound etc. The fact that entries are to be sent to AfME does put me off a bit! I think she hopes to put some on display in the Uni library or something. Do you know anything @Graham?
    Last edited: May 10, 2018
  4. Graham

    Graham Senior Member (Voting Rights)

    I know that she was thinking of doing this – we discussed the general idea a few months ago, but I haven't heard anything more until this thread. Sorry, can't help!

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