1) PR photos of people with ME, 2) helping ME researchers/doctors w/ PR verbiage

There has been a recent research paper (Stanford study from Dr. Montoya's lab, brain abnormalities for CFS) that quite a few news sites have picked up on. During some FB discussions some of the main criticisms are the stock photos used that trivialize the severity of this disease, and also verbiage mentioning hypochondria or the disease not being real ( that term was used from a quote by Michael Zeineh, lead author of study). 1) It would be nice if we have a project to collect photos that would represent the moderate to severe ME patients. I am guessing we would need waiver statement to allow free use of the photos for the media. And the photos would need to be of high quality and visually captivating/appealing. It would also be a great resource for the doctors and researchers to use as reference when they release their info to the press... (eg. go to this link for access to free pro-photos representing ME patients.) 2) Another item that would be useful for doctors and researchers are guidlelines for when speaking to the public/media. To provide terminology that validates this disease and what terminology/phrases that are a detriment to public perception which would dwindle support for ME research (mentioning hypochondria, psychosomatic, not a real disease).

Showing 7 reactions

  • Fibro '73 ME/CFS '79
    commented 2015-01-01 18:55:11 -0500
    CNN had a report on ME/CFS and they used some healthy as all get out guy looking tired from a long car ride. Illustrations and photos are extremely powerful and will play in just as much if not more to how people perceive ME/CFS.
  • Fibro '73 ME/CFS '79
    tagged this with Important 2015-01-01 18:55:09 -0500
  • Fibro '73 ME/CFS '79
    tagged this with Good 2015-01-01 18:55:08 -0500
  • Mary Ann Kindel
    commented 2014-10-31 13:56:57 -0400
    I love this idea. It would be helpful if the FB group could point out to me examples of articles with bad terminology, and then proofread/tweak what I’ve written.

    The photo portion would be more difficult. Photos of people would require releases as you were saying. Most of the things I’ve seen online are amateur snapshots. The best thing would be to get a pro photographer to take photos if you want something that’s iStock quality. Either hire one or get a volunteer who is a pro to do this for us. Then post them on iStock or other pro stock photo sites under the keywords “chronic fatigue syndrome” “ME/CFS” etc. Illustrations are another possibility. Maybe something could be done for cheap via Fiverr.

    Go to istock.com and type in “multiple sclerosis” for an example of what could be done.
  • Mary Ann Kindel
    tagged this with Important 2014-10-31 13:56:56 -0400
  • Mary Ann Kindel
    tagged this with Good 2014-10-31 13:56:54 -0400
  • Tracey Smith 💖
    published this page in Suggestion Box 2014-10-31 00:16:24 -0400