Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

"Determining the Disease Burden of ME/CFS" by Mary Dimmock in SMCI's The Chronicle

Discussion in 'General ME/CFS News' started by Rowena Ilagan, Apr 1, 2017.

  1. Rowena Ilagan

    Rowena Ilagan

    Messages:
    72
    Likes:
    210
    Check out the article "Determining the Disease Burden of ME/CFS" by Solve ME/CFS Initiative (http://solvecfs.org/) Board Member Mary Dimmock in the latest issue of the Chronicle.
    Are you signed up to receive SMCI's print publication, The Chronicle, which is published four times a year? It is available free to anyone who wants to receive it. Sign up here for a subscription: http://bit.ly/2nQK6fq
     
    Snow Leopard and Dolphin like this.
  2. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,850
  3. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,154
    Likes:
    17,887
    I have a lot of respect for SMCI and subscribe to their newsletters. However, just giving a link to the website and inviting subscription is not really helpful in starting a discussion. It means everyone has to go over to the website, search for and find the article, before they can participate in any discussion here.

    I thought I might be helpful and find the article and copy a bit of it or summarise it here, but I used the link you gave which took me to the website, and used the search function to look for Mary Dimmock and then to look for Determining the disease burden. Neither search found the article. I give up.
     
    Hutan, taniaaust1, Diwi9 and 5 others like this.
  4. Joh

    Joh Inactivist

    Messages:
    810
    Likes:
    4,808
    Germany
    Hutan and trishrhymes like this.
  5. AndyPR

    AndyPR Senior Member

    Arguably it's spam like behaviour, in my opinion.

    Solve Homepage > Newsletters (at bottom of page) > Archive (underneath sign-up form) > Latest version of the Chroncle (PDF version) http://solvecfs.org/wp-content/uploads/2017/03/Chronicle-02-2017-1.pdf

    Link to jump straight to article - http://solvecfs.org/wp-content/uploads/2017/03/Chronicle-02-2017-1.pdf#page=15
     
    Sancar, MastBCrazy, Laelia and 2 others like this.
  6. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,850
    It does feel like that, especially with the complete lack of engagement. Never got a response on the previous thread she started the same way either.
     
    trishrhymes and AndyPR like this.
  7. Rowena Ilagan

    Rowena Ilagan

    Messages:
    72
    Likes:
    210
    @Valentijn @trishrhymes @Joh: I communicate with the advocacy and engagement manager at Solve ME/CFS Initiative regularly and there is a lag time with getting some of their news out. I requested the links to the article itself-as soon as I have those will post them here.
     
    Solstice and MastBCrazy like this.
  8. Rowena Ilagan

    Rowena Ilagan

    Messages:
    72
    Likes:
    210
    As an ME/CFS patient for the last 4 years, I have been assisting SMCI with getting their news out to other patients/advocates in social media groups, forums, and blogs.
     
    Solstice, MastBCrazy and Diwi9 like this.
  9. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,154
    Likes:
    17,887
    Hi @Rowena Ilagan , I don't doubt your motivation to help SMCI share their news and encourage more ME sufferers to learn about what they are doing. As I said in an earlier post, I respect and appreciate what SMCI are doing.

    However, I wonder whether you can see that the way you are going about sharing their news on Phoenix Rising is starting to annoy some of us.

    This is not simply a noticeboard for advertising organisations, it is a forum for interaction between ME sufferers, carers and supporters. If you are going to be useful to SMCI, I suggest you spend time learning more about how PR functions, and perhaps participating yourself if you want to.

    Starting up lots of new threads which refer to aspects of SMCI work, but then link simply to the website and to the subscription link is not helpful.

    Can I suggest that instead, you only start a new thread once a month when the new newsletter comes out, and make your post much more informative about what is in the newsletter. Or even better, start a single thread headed something like 'Latest Solve ME CFS Initiative news', then once a month when the newsletter comes out, or other events arise, you can add a new, informative post to that thread.

    Otherwise, I'm afraid all you'll do is put people off.
     
    Hutan, ahimsa, taniaaust1 and 2 others like this.
  10. Rowena Ilagan

    Rowena Ilagan

    Messages:
    72
    Likes:
    210
    Suggestion noted. I also communicated with SMCI; perhaps a better way to get their news out would be to create a page here with regular updates on their activities.
     
    Solstice, Jan, ahimsa and 5 others like this.
  11. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,961
    Likes:
    12,894
    Sth Australia
    that would be much better as many of us have limited energy to spend on posts and I felt like I wasted energy clicking this thread and find there was nothing at all to do with the title here. That's something which will annoy many.
     

See more popular forum discussions.

Share This Page