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Blog: puffins&penguins&me: "This Is How We Become The #MillionsMissing – A New Project For 2019"

Discussion in 'General ME/CFS news' started by Andy, Feb 25, 2019.

  1. Andy

    Andy Committee Member

    Hampshire, UK
  2. Esther12

    Esther12 Senior Member (Voting Rights)

    Best wishes to everyone out there who is living with health problems without having people close to them to lean on. Isolation can be such a strain for people in itself.
    MSEsperanza, MEMarge, shak8 and 4 others like this.
  3. Phoebe

    Phoebe Established Member

  4. Hutan

    Hutan Moderator Staff Member

    Aotearoa New Zealand
    It's a really interesting idea, thanks for doing it and blogging about it.

    I know the aim here isn't a scientific study. But formal time study projects could be worthwhile too in helping people understand the impact of the illness and accurately stratifying severity. e.g. done over a week or a month with healthy controls and perhaps people with MS or other more socially accepted illnesses for comparison. If done with a group of young people, it might provide an interesting counterpoint to Crawley's definitions of severity levels.

    Perhaps those researchers who can't do biochemistry or exercise physiology might like to think about doing a time study project rather than something waffly involving shopping bags?

    In the comments under the blog there is a discussion about phone calls as a social activity. There's social media too. I know this forum accounts for a large part of my social interaction, with things like Skype messaging, texts and email also contributing to my sense of connectedness with the world.

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