Recently Dr. Dennis Mangan, retired
NIH chair of the ME/CFS Research
Working Group, penned a
problematic piece with the convoluted title “Writing an NIH grant application—Team science: Playing in the same sandbox.”
Mangan delivered the news that ME
deserves research. The anticipated
“but” arrived in no time with the word “regrettably” as in “Regrettably,
Congress is now talking about a decreased budget for non-defense related
‘discretionary’ expenses… such as NIH-supported medical research. The
success rate for applications is likely to decrease. Opportunities for
additional research on ME/CFS will be lost.”
Pass the potatoes. I should add
that I once worked for a boss who couldn’t give me a raise but had a
wastebasket worth $14,000.
Mangan went on to discuss how
researchers working on a team science project should “know their
collaborators,” get input in the early planning stages, decide who should be a
“team leader,” and get “everyone fully committed to the project.” Who the hell
is this piece for? Children? You
know, when my niece was about 5 years old, she saw a photo of the Backstreet
Boys on the cover of my Entertainment Weekly. Pointing to their white T-shirts, she said shrewdly: “Those boys are on the same team.”
With what passes for wit in the government, Mangan drove home his point by including a
lame T-shirt in his piece:
In a follow-up letter came Mangan's inevitable catch-22: Until we have a "breakthrough" about ME, the government won't throw any meaningful money at it.
In my view, the only redeeming things about the Mangan missive were the brilliant, piercing letters by ME patient Matthew Lazell-Fairman and CFIDS Association board member Jennifer Spotila. In particular, Lazell-Fairman discussed the concept of “will”—or the lack of it, when it comes to the government’s longtime lip service to ME.
In my view, the only redeeming things about the Mangan missive were the brilliant, piercing letters by ME patient Matthew Lazell-Fairman and CFIDS Association board member Jennifer Spotila. In particular, Lazell-Fairman discussed the concept of “will”—or the lack of it, when it comes to the government’s longtime lip service to ME.
In her letter, the
CFIDS Association’s Kim McCleary hurled a bunch of statistics, always guaranteed
to bore readers to death. I have no recollection of any of it, as I had to hold
my head to keep it from exploding. Please stop doing this, Kim. See the forest through the trees.
A man I used to sleep next to had
the bizarro habit of squirming uncontrollably before falling asleep, making it
impossible for me to fall asleep. So we devised a code word for keeping still:
“tomato.” And he’d remain blessedly still until I slipped into unconsciousness. I have no idea
how we arrived at “tomato,” except that we both loved Jersey tomatoes (with
coarse sea salt), so it conjured pleasant thoughts.
Maybe ME patients need a code word
for “cut the crap,” when it comes to government mumbo jumbo. What should it be?
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I'm not sure why anyone in the ME/CFS community thinks the government will ever do anything meaningful into researching this disease. Same with people who are excited Obama acknowledged it when someone brought it to his attention. It's all fluff. Plus, doesn't anyone realize our country is going bankrupt with ridiculous amounts of spending on unnecessary wars and other BS? Let's be realistic, government really doesn't care about us.
ReplyDelete~19 year CFS/FM sufferer
I have to concur with Anonymous above: it's all fluff meant to placate patients and dissuade them from truly raising hell. The government ship set deliberate sail for the seas of bumbling confusion and dissembling misdirection from day one. Our arrival here is no accident.
ReplyDeleteThe CAA is a complicit front organization helping to achieve this goal. Research1st, their propaganda outlet, is about as likely to truly challenge this status quo as an "organic" question posed during a political Town Hall is to likely to push the pre-defined boundaries of debate.
All fluff. All smoke and mirrors. It's time we stopped falling for it.
Unfortunately, both messages by Anonymous above are true. The government is not going to do anything different from what it has been doing for the past 30 years unless patients start speaking up for themselvs instead of allowing the CFIDS ASS of America to speak for us.
ReplyDelete"All fluff. All smoke and mirrors. It's time we stopped falling for it."
No one else is going to rescue M.E. patients. If we want changes, we will have to do it ourselves, starting with speaking for ourselves instead of allowing Kim McCleary and friends to continue speaking for us--and selling out our interests.
Patricia Carter
It's a shame our patient reps fell for his placating BS once again. Ever hear of get it in writing! Or don't stop till you get what you deserve! When are we going to stop being placated so easily.
ReplyDeleteFauci has been giving out the message "screw CFS" for 25 years now. People like Mangan are "just following orders," (which see, Nuremberg.) The only way anyone is ever going to move is direct instructions LOUD from Kathleen Sibelius. Or, if Obama is reelected, possibly when Nancy de Parle follows up on his order to investigate which the Millers inspired in Reno. I suggest starting campaigns addressed at Sibelius and de Parle November 7th.
ReplyDelete