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NIH="InsufficientResearch"=DUH !
Treatment= more"SELF Management"
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Friday, November 13, 2009

#38~ "Call to Arms" WPI~Pres. & NYT article

Hail WPI fans :-) we HAVE "news" from
one of our Chiefs.. sent to us Nov 12th.

...and with this NEWS comes OUR
"Marching Orders.."

For those in the U.K. you have the
addresses & letter that I posted in
a previous blog post.

Enough blathering.... READ Annette's Letter
and then read my notes Below...
Then......***GO TEAM GO***

Since we published the XMRV study the WPI
has been extremely busy establishing new 
collaborations and moving the work forward. 
This is truly a world changing event for the 
field of neuro immune diseases and patients 
who suffer from them. 

First I want to thank you for all of your kind

words of support and very generous donations. 
They give everyone at the WPI the added strength
and motivation to continue full speed ahead. 

Secondly, let me explain some of the things 
we have doing to since the article was published.
We have been working for you. We have been in 
Washington, DC explaining the significance of 
these findings to our representatives of the 
state of Nevada and our country. 
We have spoken to representatives of the 
institutes' of health encouraging them to 
dedicate funding to XMRV research. 
Patient studies must be done outside of the
NIH to bring answers that will end this 
cycle of disease.

We are overwhelmed but very excited 

about the possibilities this finding will 
bring for our loved ones. 

The recent conference at the Cleveland Clinic
of 75 Scientists included Dr. Mikovits, 
Dr. Vincent Lombardi and many others who
understand the role of retoviruses in 
human disease. They were able to develop
key relationships and collaborations in support 
of research of XMRV. 

We are confident that good science will 
ultimately lead to the answers. But we need you.
We need every person suffering from this
debilitating disorder to help by writing your 
congressmen and senators and asking for 
research funding for the WPI to continue 
its studies of XMRV in CFS and other 
neuro immune diseases. 
We must have funding to establish mechanisms
of disease and treatments for patients. 
Clinical research centers must be created 
to establish effective treatment protocols 
as quickly as possible.

There's so much more to come. 

Thank you for all your love and support,

Annette Whittemore
Founder and President
Whittemore Peterson Institute
for Neuro Immune Disease
6600 N Wingfield Pkwy
Sparks, NV 89436
775-348-2335 Phone
775-348-2350 Fax


Here is another more recent article
about the Whittemore's and the
History of the founding of the Institute...
in the  New York Times
I have provided you with many
links to info, to the CFSAC meetings,
and places from which to acquire
statistics to add to your letters.

Remember to NOT make them whiney
letters, but statements of FACT about
How long YOU have been sick,
Were you a young child then or a 
working-tax-paying citizen doing what?

How much your Dr's have NOT been
educated about treating this illness,
the hardships it has placed on your 
family, the loss of your ability to 
work and be a Productive TAX-paying
citizen that you WISH to BE, but how 
you NEED to be well enough to do so.

How you have knowledge of Millions
in the USA, U.K., Europe, Australia,
New Zealand because we are 
ALL in Contact.... there are 28 Million
of us Worldwide.

For those in the USA:
Here is your link to find out who is
your Federal Congressional Rep/Senator:

Refer them to the Oct CFSAC meetings
and testimonies given there by not ONLY
the Dr's & researchers, but also by all
of the PWC's and their Families.

Make reference to the 
Obama/Biden Transition letter that
was sent to the Administration-to -be 
back in Jan. but was written in Dec. 
after the Election.

Write as many "Drafts" as you need to..
Collaborate with other FB or PWC's friends.
Try to make your bullet points in Time Order
culminating with the Report in early Oct
published in Science thanks to the 2 yrs of 
work by WPI, after waiting 25 yrs for other
Governmental agencies to Help us for not.
...and then the Crescendo of the CFSAC
meetings and how this ALL ties in with 
Health Care Reform. NO Dr's can Help us
if the PROPER Research has NOT been done.

Try to be MORE Positive about How the 
HELP for Research NEEDS to be "Targeted
to Places such as WPI" that have a PROVEN 
Record of producing RESULTS, instead of 
places that  have floundered for years.
Time = $ = HEALTH = Life = Citizens = work = taxes
4 Million sick = loss of taxes & family stress. 

Ask them to HELP US ~ Help the Country..
Help us get Well and we will work and pay taxes.
Use your own wording, but I think you get 
my point.. work for a Win/Win... 
Give them a REASON To Help Us...
Use my list of Famous People to show
that all strata of the society get  this.
Use my list of articles and websites
to gather info...then edit it for concise
bullet points.

If you have NO idea what to write
please use the previous posted 
letter "as a guide" and change the 
names & figures as needed to make
it fit the USA or your location.

If you are as FB user, brainstorm on a 
Discussion Page Topic if you wish on

the WPI FB page. Otherwise, gather
together with YOUR "local" ME/CFS
group, use your local online Forum for
CFS, use Twitter, Use My Space, 
Gather ALL of your thoughts...

1) Send letters IN...
2) Follow them up after with a phone call.
3) Follow that up with an email.

Maybe some of us can write a 
Main "Petition Letter" and we can
send you the text, you can print it out
and get ALL of YOUR Friends & Family
to Sign it and, make a copy of it, to keep
as PROOF, and IF Possible DELIVER  
the Signed Petitions to the Local Office 
of your Rep/Senator when they 1st get home
for the Holiday break.

Co-ordinate with your local groups and 
NOTIFY your local PRESS both TV & Radio.
Send a copy of your letter/Petition to your
local newspaper if you still have one.
Send a copy to your Largest Regional
Newspaper. Write Letters to the Editor.
Keep the Ideas coming and post them
for others to brainstorm about.

These are just my First few thoughts
off the "Top of my Head" ,as they say...
No one has urged me to say these things,
the words are all my own...
"Thoughts From the 4am Vault" ;-)

Post Ideas to Annette on the FB page
if you have any questions about anything
you feel you might need Permission to do.
That was Everyone can SEE the answer.
We ARE in contact with each other NOW..
Let's KEEP this ball rolling and make it 
HUGE like that ball in Raider's of the Lost Ark.
We are the Raiders now and  WPI is our ARK
that is trying to SAVE US...
May History Repeat itself...
NOAH, are you Listening???

As one of the old lines from one of my 
fav late night shows use to say.....
"Talk amongst yourselves." ;-)
Like my screen name says....
NOW is the TIME for 

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