one of our Chiefs.. sent to us Nov 12th.
...and with this NEWS comes OUR
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.
Thank you for all your love and support,
There's so much more to come.
There's so much more to come.
Founder and President
Whittemore Peterson Institute
for Neuro Immune Disease
6600 N Wingfield Pkwy
Sparks, NV 89436
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
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,
CALL IN ALL THE TROOPS.
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
ME+CFS=UNITE and GO FOR IT !!