A great question asked by Sunshinebright – #ME Where are we? A question I would like a great answer to.
Alas, I am doomed to be disappointed. As Sunshine pointed out, 2015 started out with a lot of optimism. M.E. was officially declared a real, physical disease by the IOM. This was a big win, as an estimated two million sufferers in the U.S alone, including myself, have been treated horribly by the medical establishment. M.E. had never been taught in medical school and doctors typically would “poo-poo” the symptoms effecting M.E. patients. We have been labeled as hypochondriacs and being mentally ill. The outcome of the IOM’s report would surely change things for the better – this was the hope. More research dollars to find a biomarker and, hopefully, a treatment that works (if not a cure.)
The truth: Doctors still have no clue what M.E. is. Money for research is still not coming from the NIH. Just this month, Dr. Ian Lipkin , a researcher, resorted to eating hot peppers in a challenge to raise funds. Very sad.
During the first half of this year, there was much going on in the Health and Human Service (HHS) Department and regarding ME (Myalgic Encephalomyelitis): we had the IOM’s (Institute of Medicine) outstanding, positive report (in my opinion) and then there was the P2P (Pathways to Progress) report. The former was indicative of forward movement in the cause of ME and the latter, was not.
We’ve been ignored.
There were stand-offs, delays, and hidden refusals when the FOIA was used to obtain documents vital to the ME cause.
And where are we? After all the hullabaloo and interviews of patients including Laura Hillenbrand, author of “Seabiscuit,” Jen Brea, co-developer of a movie, “Canary in a Coal Mine,” I ask again:
Where are we?
It looked like we had some strong headway for a while, in getting ME recognized as a VERY SERIOUS disease (which it is of course), and…
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