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Dec.2014 LauraHillenbrand FaceTheNation
ME+Unbroken Interview HERE -

Dec 2014 ~ "NIH"P2P4ME"

NIH="InsufficientResearch"=DUH !
Treatment= more"SELF Management"
DraftReport HERE
Nov.2014- "Plague"-Published !!
VOA-PodcastAudioInterview HERE
Amazon USA Link HERE

Wednesday, September 23, 2009

#2 a small, yet BIG "PR" Victory

As ONE of the Main challenges of this illness has been
not ONLY the ignorance and lack of attention that the
Federally Appointed Research Agency in the USA has
given the 4 million & growing patients with this illness,
but the “Public Awareness” of the Reality of the
Seriousness of this disease… EVER since the CDC gave
it their “made-up ONE symptom ONLY nickname” and
that name has brought additional pain of mental &
emotional abuse to it’s Sufferers as the the Medical
Community the Public had even nicknamed it
“the yuppie flu” and for years thought it was
“all in our heads.” So we have not ONLY been Seriously
ILL but have been Victimized by our own County &
Public. Even after ensuing years the CDC was found
using OUR Research money for other purposes, so
they were mandated to run a Publicity Blitz Campaign
notifying Dr’s & with public ads telling them that
CFS was a REAL &  a Serious illness…but, the year's
of damage had already been done and their PR was
too little too late, as their ads said to "go to a Dr
& get Diagnosed," BUT they had NOT done the
required Research or even Educated the Dr’s about it
therefore..we all say LOUDLY ——> Enough is Enough.

Thanks to the internet and the invention of laptops,
although we are bedridden we are now becoming an
Army of 28 million that ARE Speaking UP for
Ourselves (& our families/caregivers if we have them)
even tho many (not all) Live “literally” in the dark, and
can not tolerate very much sound or speak loudly..
So we have started some online campaigns and are
blogging and using Twitter and Facebook and any tool
we can find to Help Educate the Public and
Raise Awareness of this too-long ignored Serious
illness… ---> 28 million “Voices 4 a Cure”.

We don’t have any Michael J. Fox like Parkinson’s does
to speak UP for us.. The closest we have is
Laura Hillenbrand that wrote the book that
became the movie.. “Seabiscuit” about the race horse.
I also have heard that well known Buddhist monk,
Pema Chodron, also has this illness. I now know of
others and will list them on the Right.. Anyone that
“actually recovers” from some fatigue illness did
NOT have ME/CFS, they had something else…OK?
If you truly have ME/CFS you “learn” how
"to Live with it” then you DIE. period.

The ONLY thing that has been shown to Help the
TRUE ME/CFS is the work, so far, of Dr. Cheney.

There are a "handful" other Dr’s that have also been
doing research, and are treating other things they
believe are causes of ME/CFS whom I will name later.

So what’s our little/BIG PR victory you ask…. ???
For the last 5 years Oprah has had a Cardio-Thorastic
surgeon Dr. Mahmet Oz on her TV show..
He NOW has started his own TV daily show that
just went LIVE last week. He is a Very Smart
Compassionate human being.. One of the kind that
Lives by “the more you know the more you don’t know”
and is continually educating himself AND the public…
For That I RESPECT him Very much..
He does not hide his head and “play Ostrich” like the
rest of the medical community. He lives on the
cutting edge and is honestly trying to make a
difference helping to educate the public in a way
that the Majority of the medical community has
NOT done up to this point. Having worked in a
hospital for 17 years, and I also worked in Cardiology
for awhile, I can speak with a little knowledge.

To get to the point.. ever since we found out that
Dr Oz had a Twitter Account the online ME/CFS
patient army has been sending him Tweets to
Raise HIS Awareness of our Cause..
Many online medical forums/blogs do NOT even
to this day, after all of these 25 years, even list
ME or CFS in their list of diseases.
I checked the Dr Oz TV website and we “already”
have a category and I believe he has reached out
to the medical world with inquiries for input and is
getting replies from them that he is posting…
I checked yesterday and he had 3 replies, by last
night they had added a 4th one..

So KUDOS to the Online Twitter #MECFS Community
and to DrOz♥ for Helping to Raise Awareness♥ And
Thank You Dr Oz for listing us and doing some
research into this illness and giving us the space
on your website to help Inform the Public that
we are NOT just a yuppie flu but a serious illness,
that needs attention.

We will continue to educate Dr Oz and hope that he
will also continue sending out his inquiries to help
find answers for us.. as this disease eventually
effects our hearts and he is a Cardiologist I was
hoping this issue would catch his attention.
May our relationship GROW to the point that
“someday soon” he will possibly even have
a segment about ME/CFS on his actual TV show..
and may he Grow to Learn that TRUE CFS is Really
M.E., that Apples are Apples and Bring some Sanity
to this LONG Misunderstood illness, not only in the
world but especially in the USA. That is one of the
reason’s that my Twitter name is ME_CFS_unite..
Hoping to Raise that Awareness that they ARE the
same and to unite all of us that have been SO
Poorly Supported so we could at least
“feel supported” by each other around the world.
I Tweet almost daily with other ME/CFS/FM folks
from across the USA, Canada, the U.K., Denmark,
Belgium, New Zealand, and Australia.

Color me Happy for one day at least and can you
see me smiling in the dark?

Dr Oz ME/CFS page

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