" At the CDC grand rounds last week, Nath citing the legacy of ACT UP affirmed that, “input from the patients is absolutely critical for any disease that you want to study. They’re the ones who really experience the symptoms and live it.”We heard this from other scientists as well, Lipkin for example. So unless this a ruse, we should advocate for positions that are detrimental toward the ME/CFS community
So with all of the events of the last few weeks, I like to change the dynamics at this time by stating my appreciation, thanks and applause to all those involved in helping this community.
Speaking from experience, some do not realize the cost to advocates in terms of their health and we owe a great deal gratitude for their tireless actions on behalf of the ME/CFS community. Advocates had significant impact on the IOM by making sure that proper representations on the panel included experts in the field of ME/CFS. Because of those actions, ME/CFS was diagnosed as a biological illness and in no uncertain terms the IOM report categorized the horrible treatment patients received at the hands of the medical profession.
The sacrifice and work load was enormous. So few have helped so many. Personally, I thank the work of so many on the CFSAC committe..Jennie Spotila who chronicled the toll on her health, DSM codes, Suzy Chapman, JB in FOIA lawsuit so many to thank. In my small group mostly attorneys focusing on the IOM, we were falling by the wayside left and right with decline in health issues, Ren, Leela, justinrielley to name a few. Mary Dimmock, Llewellyn King, Mary M. Schweitzer, David Tuller, Tom Kindlon, Lady Mar and all the advocates who signed the IOM letter. Too many really to mention, but we owe our progress to them as others take up the torch to carry forward like Sasha, Jen Brea. Other names not mentioned is not a slight just that I haven't direct knowledge of the work. Gratitude and thanks to all of the patients in the PR community who have dedicated time in researching all the articles and have voiced their opinions and objections against the injustices they have observed by fighting for better research.Bob, Simon, Dolphin, Alex3629, Esther.. To the PR staff, for their dedication in trying times and for allowing a place where patients can gather as a community.
We still have a job to do in voicing our objections to various researchers that patients feel will be harmful to the current NIH research. The community must still be diligent as the road ahead is still difficult to overcome the paradigm shift to biomedical reductionism.
