1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Marketing Materials for CFS/ME/CFIDS Awareness

Discussion in 'Action Alerts and Advocacy' started by energyoverload, Sep 20, 2010.

  1. energyoverload

    energyoverload

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    London
    Hi guys,

    Do you think there is still the need for a single website that mainly graphically annotates all of the abnormalities found in CFS bodies all based on scientific research. We could have links to the research source for each statement. And how these biochemical changes can make you feel, how they present in terms of symptomatology. This might enable the reader to relate and have more empathy for people with CFS. If they read and think oh they only have e.g. 7/8 the amount of blood of me. They might think my goodness they need urgent help! Like a transfusion or something, "why aren't these doctors helping them?", they may enquire...

    I think we could also do some case studies of people with CFS to enable people to put a face to the disease. To show them that it could be their neighbour, son, daughter, anyone really. And include a short biography about these peoples lives, what they were like before they got ill, what they are unable to do now and what little help they receive from doctors due to lack of research funding etc..

    Be good to hear some feedback. I have only done a very small part of the marketing materials so far, but I want to hear some ideas if I am to proceed further and of course whether or not this would be constructive.

    Of course the backbone of this is the website the leaflets etc which we can devise ways to distribute will link to the website, where we could have:

    - Medical animations (possibly for XMRV/MLV) showing what happens once these viruses enter the blood stream, just like the HIV virus videos on youtube:

    http://www.youtube.com/watch?v=RO8MP3wMvqg

    - diagrams of the human body with annotations showing pathologies and the symptomatic presentation of these

    - case studies/ profiles of people with the illness using videos

    - Try to make people understand that WHAT THEY SEE if not WHAT IS HAPPENING, i.e. you can't tell a book by its cover. We need to find some way to strongly convey that message.

    - Get materials from CFS Docs/Researchers etc. discussing various biochemical abnormalities.

    Lets see what you guys think! (p.s. please check out the attachment marketing materials)

    Thanks,

    Jake

    Attached Files:

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