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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, December 28, 2012

How Many Deaths Will It Take?

...Yes, how many years can a mountain exist
Before it's washed to the sea ?
Yes, how many years can some people exist
Before they're allowed to be free ?
Yes, how many times can a man turn his head
Pretending he just doesn't see ?
The answer my friend is blowin' in the wind

The answer is blowin' in the wind.

Yes, how many times must a man look up
Before he can see the sky ?
Yes, how many ears must one man have

Before he can hear people cry ?
Yes, how many deaths will it take till he knows
That too many people have died ?

The answer my friend is blowin' in the wind
The answer is blowin' in the wind.

                                               ~Bob Dylan, "Blowing in the Wind"

The year ends on a very tragic note.  A patient with ME, from The Netherlands, died this morning due to the misdiagnosis of her ME and the doctors believing it was all in her head, the usual, though with fatal consequences.  Because of this "psychosomatic diagnosis," what was missed was her metastatic breast cancer.

I've written before that I don't allow myself to cry when it comes to this illness.  However, that has changed today.  Today I cry again for a senseless death. This is something that I've warned about in this blog and have written about on several occasions. In the post Betrayed!, I wrote:

"Throwing CFIDS into the psychological/psychiatric category causes people not to be inspired to look for the real causes or co-morbidities."

I know I must have sounded to some like a loony-tunes person who was totally over-reacting to things and situations which COULD occur, but that's not it, is it, folks?

And will anything be done about this?  NO, of course not!  We had Emily Collingridge's death back in March of 2012 (see link) with one of my very first posts.

We have seen repeatedly that no one really cares if we live or die.  The CDC got away with what it did back when the powers-that-be were finally talked into sending a team to Incline Village, Nevada, after the first cluster broke out.  The NIH got away with it when misappropriating the few funds that could be badgered into throwing us as a few bones, with no criminal charges taken for misappropriating funds.  Why should the so-called experts be called on the carpet now?  They see what they can get away with.

I highly recommend that one should absolutely read the excellent post that Jeannette wrote in her blog, "Thoughts About ME."  There Jeannette describes the Ampligen hearings on December 20 of this year (see link here) and the way even our "heroes" voted against us.  ("Is it that you're afraid of losing your ivory-tower Harvard position, Dr. Komaroff, that's made you into a turncoat," my words and thought.)   Jeannette writes:

"What I hadn’t accounted for in my attempt to predict the outcome of the meeting was that at least some (maybe many) of the 14 committee members would know close to nothing about either the disease or the drug. "

Who could ever have imagined the malfeasance by the FDA's obvious mistreatment of those sick with CFIDS/ME/CFS who were limited to three minute testimonies, coupled with the incompetence of the panel who sat on the board that voted.  Read the post, "A Plane to Catch," for the excellent account of what transpired there that day.  I'm still reeling from the news, but now, today, to add another senseless death to it all?

I'm beyond fed up!  I'm beyond livid.  I'm beyond disgusted.  As I've written a couple of times already (see link) as in my post titled, "P*ssed Off!" I've been sick since 1975 and I've seen nothing improve over the years.  All that's happened is that now a third generation is becoming ill.  This is nothing short of criminal behavior and really, someone(s) should be held accountable.

Criminal.  Full stop.  What else can be said, other than deepest condolences to the family and friends of Denise?  RIP, Denise.

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