August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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Children with ME need relevant science, not pressure to do more, more, more

Discussion in 'General ME/CFS News' started by AndyPR, Jan 24, 2017.

  1. AndyPR

    AndyPR Cookies for Tired Sam

    https://thebristolcable.org/2017/01...m_source=SocialMedia&utm_campaign=SocialPilot

    I think this written by one of the members of PR, good job in getting this printed. :thumbsup:
     
    MEMum, mango, Art Vandelay and 16 others like this.
  2. trishrhymes

    trishrhymes Senior Member

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    Well done Jenny Horner.

    A really excellent article that manages to bring in lots of important information in a few words.

    I hope parents tempted to sign their children up for FITNET or MAGENTA will see it before it's too late. And I hope the authorities at Bristol Uni. see it and take action.

    I tried writing to the Bristol Uni vice chancellor about a month ago, spelling out the problems with FITNET and giving him useful links. Of course I didn't even get an acknowledgement...
     
  3. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Thanks for sharing @AndyPR I was just visiting to do that, so saves me a job and it feels a bit weird starting a thread with your own content.

    Also, there's a ME Action Network Action about this http://www.meaction.net/2017/01/24/help-spread-the-bristol-cable-article-about-stopget/ the idea is to link this to increasing signatures on #stopGET petitions

    Please upvote on reddit to increase exposure https://www.reddit.com/r/inthenews/comments/5pw093/children_with_me_need_relevant_science_not/
    You can add comment eg with evidence or personal experience of harm
     
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  4. Jenny TipsforME

    Jenny TipsforME Senior Member

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    If people could share around facebook that would be great (facebook costs me a lot of spoons for some reason).
     
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  5. trishrhymes

    trishrhymes Senior Member

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    Now that I know who you are, I can say very well done. It's an excellent article.

    Do you know what the circulation is like for the publication? How likely is it, for example, that people with influence within the Bristol University will see it?
     
  6. Jenny TipsforME

    Jenny TipsforME Senior Member

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    @trishrhymes I think it's very likely Bristol uni people will see it. I'll share it with a few of them over the next few days to make sure! So far I've shared with a handful of prominent students rather than staff (I think students would want to know what their university is up to).

    My MP Kerry McCarthy has seen it and she's now the co-chair of All-Party Group on ME so that's useful.
     
  7. Jenny TipsforME

    Jenny TipsforME Senior Member

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    The normal circulation isn't huge (30,000 which I think is printed), but seeing as it's online too we can get it in front of the people we want to see it. People seem to take writing more seriously if it's also in print in a newspaper.
     
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  8. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Last edited: Jan 25, 2017
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