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ME/CFS Advocacy Project: Letter Writing Campaign to Major Philanthropists‏

Discussion in 'General ME/CFS Discussion' started by redviper, Apr 18, 2015.

  1. redviper

    redviper Senior Member

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    Hello friends,

    I know that some of you participated in providing feedback on the original letter sent to Tim Cook, the CEO Apple asking that he direct some of his future charitable donations to the ME/CFS community. Since then, our team has researched, identified and are now preparing to write to major philanthropists that have been assessed as the most likely to support ME/CFS research.Through the process of our research, we have identified more potential candidates than our group of writers currently has the capacity to meet. We are looking to add a few more intelligent people to help with the writing and editing process, as well as help provide strategic guidance for the project moving forward. While previous experience as a writer, editor, or journalist would definitely be an asset, it certainly isn't mandatory. I also feel that I should note that everyone in the advocacy group has ME, so everyone is very understanding and flexible about people being unable to meet certain commitments due to health.

    At this point we are looking for people to primarily provide assistance in two different kinds of ways.

    1) We are looking for a couple of different people to serve as lead pens on some of the letters. It's important that your writing is clear and concise, as well as that you incorporate feedback and work collaboratively with the rest of the team. All letters go through a peer-review process, so it's important that all writers can accept feedback in a professional manner.

    2) We are looking for ME patients to help provide feedback on the letters by participating in the peer-review process and providing their thoughts and any potential edits.

    If you're interested or would like to know more, feel free to shoot me a message.
     
    Cheesus, Bob, oceiv and 4 others like this.
  2. LizzieB

    LizzieB

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    Hi redviper, I'm a bit slow on the uptake, but I'd like to help with peer feedback. I'm fairly literate, have done a little writing, though the brain isn't what it used to be.
     
    oceiv and Esther12 like this.
  3. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Who are you asking them to give money to?
     
  4. Matthew Jones

    Matthew Jones Senior Member

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    I got part way through writing a letter to J.K Rowling about this as she donated to MS research which her mother suffered from. I got too tired to finish it though and gave up. Maybe I could dig it up and it could be of use?

    I'm very brain foggy at the moment but I have experience as a copywriter and I scored highly on language precision for philosophy essays at Uni.

    I could finish of my letter to J.K. (it's written especially for her) but can't commit to much more than that besides joining the peer review process. I might be able to write a few more letters by recycling already written stuff. I can't quite volunteer to be a lead pen due to brain fog but I'll do as much as I can.

    btw a great simple and free tool for organising online teams is https://slack.com/, maybe we could create a pheonixrising slack team?
     
    catly, oceiv, Debbie23 and 1 other person like this.
  5. redviper

    redviper Senior Member

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    We are still looking for one or two more volunteers to join the team. If you feel like you would be a good fit for the project, feel free to send me a message. This campaign will launch within the next few days.
     
    catly, oceiv and RL_sparky like this.
  6. redviper

    redviper Senior Member

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    That will be determined based on the individual philanthropist and which ME research project they are assessed as being the most likely to fund (there are some real obvious approaches with certain candidates), but obviously clinical trials of promising drugs would be a priority for funding, as would anything associated with Dr Lipkin and Dr. Horning or any subsequent efforts to replicate their studies. Similarly, any other promising projects attempting to establish biomarkers would obviously be a priority.

    However, the approach is to make these decisions through consensus as a group for each letter that is released, so it will obviously depend on which research projects group members decide to support. We are a transnational advocacy group, so our funding priorities for research studies really are driven by what is best for the global ME community as a whole.
     
    Last edited: Apr 24, 2015

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