What info/stats could be useful in interesting people/organisations into ME research?

[Andy]

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

 

[Xalexon]

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

 

[Andy]

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

 

[WillowJ]

ETA: Ironically, Joan is asking for suggestions for info/stats that could be useful in encouraging an interest in research into ME. However, I'll leave this thread up as I'm interested in suggestions on the original topic.

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

 

[DokaGirl]

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

 

[JoanNI]

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.