Title pretty much explains it. What information and/or statistics can you suggest that might be useful in interesting people outside of the ME world into ME research? Thought it would make a useful discussion to have. Partly inspired by https://twitter.com/user/status/1101869731194306560
This is the Memorial list of people we've lost to M.E/CFS. I think a visual list of people who have died with a short description next to their picture would be very powerful. Age. Cause of death. Anything they were involved in (books, advocacy etc). A slideshow if you will. The number shocked me and I bet that's just the tip of the iceburg. I don't think many people realise just how serious this disease can be and the psychobabble lot really haven't helped with treating it as a mental illness. http://www.ncf-net.org/memorial.htm#m
MEpedia have a number of primers written for various groups, not read them all but could be a useful starting point, as it's always best to try to personalise any communication where possible. https://me-pedia.org/wiki/Primer_for_doctors_and_researchers https://me-pedia.org/wiki/Primer_for_family,_friends_and_care_providers https://me-pedia.org/wiki/Primer_for_journalists https://me-pedia.org/wiki/Primer_for_patients https://me-pedia.org/wiki/Primer_for_the_public
Some possibilities: http://www.meaction.net/wp-content/uploads/2015/05/Diagnosing-MECFS-March-2018.pdf basically anything by Chu: https://me-pedia.org/wiki/Lily_Chu https://www.nature.com/articles/d41586-017-08965-0 https://www.fda.gov/downloads/ForIndustry/UserFees/PrescriptionDrugUserFee/UCM368806.pdf powerpoint summary of Voice of the Patient report (in pdf): http://www.nationalacademies.org/hmd/~/media/Files/Activity Files/Disease/MECFS/Eggers IOM MECFS Presentation.pdf http://mefmaction.com/docs/CCHS_Stats_2014.pdf
ME Research UK: http://www.meresearch.org.uk/what-is-me/ MEAction summary of science: http://www.meaction.net/wp-content/uploads/2015/05/ME2FCFS-RESEARCH-SUMMARY-Jamie-Seltzer.pdf Open Medicine Foundation: https://www.omf.ngo Institute of Medicine/National Academy of Medicine 2015 report on ME/CFS: http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx February 25, 2019 Medscape article with Dr. Elizabeth Unger of the CDC: https://www.medscape.com/viewarticle/908622?src=rss
Thanks so much! Lots to consider here to hopefully attract an interest in ME research in N.I. if we get very, very lucky. HSC Research & Development Division helped fund our ‘First Do No Harm’ conference last September so they are aware of the many ME issues from information I had to supply in the funding application. I feel this project is very much worth pursuing. I’ve contacted them explaining I couldn’t be upright for the 9am-4am day and they are willing to offer me a part time place at the event. Numbers are limited to 35 so at least they are accommodating to my disability.