#47~ SHOW your Support- add a Twibbon 2 UR Avatar ♥

As my 1st project for the New Decade

I have created 2 Twibbons for you to

display on your Avatars to “SHOW”
your support- as actions
“speak louder than words.”

The purpose is not to look pretty but to
provide a "visual demonstration" of
Solidarity in our struggle to :

a) see ME/CFS recognized internationally as
a disease with a physiological pathology, and

b) to promote awareness of the need for
further ACCURATE...and RELIABLE
research and replication studies.

You can Add a Twibbon to your
Twitter and/or Facebook Avatar~
For Twitter just follow the directions
on the the page as is…

If you ONLY want the Twibbon
on your Facebook Avatar please
Follow the directions below:

#1) There are 2 sizes AND angles
       to choose from

#2) after you decide, then click
        the Facebook "tab"

#3) Sign-in to Facebook

#4) Deny permissions to allow
         them to share

#5) Preview and "move" your Ribbon
around on your avatar to where you want it,
remembering that when your avatar is “small”
as in “comments”...the edges will get cut off..
so center it a bit if you can , OK?

#6) Complete the process....Hopefully success!
Please Enjoy and PROUDLY Spread the Word!

Inspired by 2 ladies whose names start with "A"

Please "Share" this around, let US see a
few of you wearing it! and SEE some
Solidarity out there for
ME/CFS/FM and XMRV, OK?

http://twibbon.com/cause/XANDXMRV/Join
(for Right shoulder)

http://twibbon.com/cause/brc4ME/Join
(for Left shoulder)

I will add these links on my Right Side column
also for those that might be wanting to
Access these later when this post is
Further down the “older post” section..
As I expect this Campaign to GO ON
Until we ARE Successful, capiche ??

We need to Saturate the Avatars all
Over Twitter/Facebook and all other
Social media with Avatars so people
Will eventually associate the Blue Ribbon
With ME/CFS/FM and XMRV as they
Do now the Pink Ribbon for breast cancer.

The “public” is a bit distracted right now
So it will take time and a LOT of
“ground-UP” work by us to INFORM
them ….via every means possible..
blogs, letters to your Gov’t Rep, to
your local newspaper, replying to
every news ezine that prints anything
that calls for us to INFORM them
“Correctly” of the TRUTH…
USE your Avatar EVERYWHERE...

Thanks for Jumping on Board this
PR wagon and SHOWING your support.
For your friends on other boards that
also use avatars and want to support us
you can send them the url for this blog
and they can access the links for the
Twibbons via this page …

I'm REALLY Getting Excited about ALL
of the New Activities as we Ramp UP
The Research and Get Ready for the
"2010 Awareness Day in May" this year..

So we are starting Early so everyone
Can be participating NOW and help
Spread the Word..

This is just the First step in our PR
Campaign Blitz, so jump on board NOW
So you don’t get “behind” and ride
This Info train with us this year
As we help spread the word about
Finding a “Cure 4 ME” and
Informing the World about XMRV.

56 Million hands clapping..
in Thanks...

If you have any other PR ideas
for this year's Campaign PLEASE
feel FREE to share them in the 
Comments section Below..OK?
Feedback is always appreciated
and encouraged...

** Gentle Hugs**

#29~ "Did you FEEL the Luv Today?

I WAS going to be one of the first to add
all of the links here from all of the Wonderful
Fellow ME/CFS folks that videod the webcast
and have put most of today's up on
youtube already, but after 2nd thought
I have been SO MOVED by what I Personally
Experienced today that I wanted to post
about the "Experience of Today."

After 22yrs of neglect by the medical profession,
disbelief by friends & family, yada, yada, yaga..
I have to say that unequivocally TODAY was
one of the BEST days I have Experienced
in MANY years.. and with strangers from 
Around the World together in Unison.

While 400 of us were watching the webcast
many of us were also on Facebook and using
it as almost a chat, quipping in like a sports-
casters with play by play commentary for
those that only had dialup or could not get
access to the stupid "Real (NOT) PLayer"
that they used to broadcast it....
I mean honestly, I have seen BETTER
broadcasts from USTREAM. The quality
and connections today were Terrible.

That aside... it was The Single MOST
Emotionally Touching Day and SO many of
us experienced this event "jointly",
chatting as we went and shared the
experience and our feelings, for better
or worse, and even shared our Cries of Joy
and our Tears of Pain at those that
STILL do NOT "Get it."

I do want to mention something that
may sound corny.. I don't care.. becuz
it was REAL and palpable today...
Because of the availability of this
invention called the internet...
SO many of us that were "Joined in Unison"
today witnessing this CFSAC meeting and
hearing all of the testimonies and the
Public comment sections and the
(to coin some one else's phrase ;-)
*you know who you are* ;-)
The Vommittee's discussions...

All the while WE were having an
experience that we have NOT had in
the over 20 yrs that many of us have had this
PofC Disease... We literally had a what I
could relate to back in the 60's, but here
as the internet version of a
"World United Group Love-in"
Totally FILLED me over the brim with
GOOD emotions and Gratitude for all
of my fellow Survivors out there..
It was and IS..so Great to meet you..
and BREAK this fricken ISOLATION
we have been jailed in for SO long..

Later, I spontaneously in my head heard
myself singing this tune....as WE have been
Warriors, finally feeling Support from each
other today, from literally around the world,
and I have not felt anything similar since
the 60's... so with that I will leave you
with my heart-felt feelings tonight...
NO matter what tomorrow brings...
I want to revel in tonight's Bliss
from OUR victory of Unity and Support
& sharing that we experienced today..
I know many of you felt it also....
We will always have many days to deal with
the technical aspects of the speeches and
nit pic what needs to be done yet, but these
TRUE Moments of Heart-felt connection
come so Rarely... I wanted to Honor it
FULLY and Give it it's due.
It felt SO fricken GREAT I slept like a baby
and had a 3 hr Power nap even after having
been UP - all night before the meeting
in anticipation, so my butt was dragging
but I only needed a 3 hr nap and woke up
filled even MORE with this song that
Truly almost every word depicts how 
I feel tonight...
TOTALLY Blessed and Grateful
no Matter what tomorrow brings..

I hope many of you also basked in the
feelings I did tonight... is this like a
"Runner's HIGH?" or just a
WPIgasm?



*hugs* to all who were there today...
and to all the new members of our
"Chosen Family."

#14~ The XAND Revolution will NOT be Televised

Yup, you've heard it before and now we are
saying it again. The Revolution will NOT be
Televised. It will be Tweeted & blogged &
Facebooked,  and this one IS being done
just so...

Thank Goodness for the invention of
the internet and laptops. I never thought
I would say "Thank You" Steve Jobs AND
Bill Gates, but I am.. Because of them,
all of us, sick in our beds ARE ABLE, even tho
Disabled but not "Officially" because of
the 25 years of lack of respect from the
CDC, and the mis-naming aka slander-naming
of our illness by them, but with
Private Research and an Army of Bloggers &
Tweeters & FB users, we have spread the
word around the World and "WE are Uniting"
and it is WORKING.

Please read the blog post listed below
COMPLETELY all the way Down... and you
will see what I mean..INCLUDING the
Comments, OK? We HAVE already
effected History.. by our Tweets and our
blogs. GO Team...Don't STOP Believing..
But our job has Just begun..
"The Guilty" are running from the eggs
that are about to cover their faces..
They will either try to disclaim the
New Research or US again...
Do NOT let them Silence OUR Voices !!!

The Universe IS Providing... as the song says,
"Hold ON, I'm coming.." hang  in there..
You've heard the slogans Before but NOW
maybe they apply to YOU for the 1st time?
"Our Army United, can NEVER be Divided."

So Thanks again to the WPI for ALL
you have done. You have given us HOPE
again..That is a Miracle in itself.. Thank
you Andrea and Annette and Dr Peterson for
Persisting and Thank You Dr. Mikovits for
all of the hard work you and your team
HAVE and will be doing...
Can you hear the 56 million
Hands-clapping for your work?

OK, you ready to read?
If you haven't heard yet...
Listen to the voice of one who also has
been here with us all along this Journey.

Hillary's blog

And a "Shout Out" for Fund-Raising
for the Whittemore-Peterson Institute
to Provide $ for Faster Research for
testing and studies..

Whittemore-Peterson Institute

Ok, that's all the news that's fit to
print today.. Time for me to rest now..
Before we start again tomorrow ;-)

#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