For those of you in the US - NIAID grant money for XMRV Research

Hello,

Is anyone else wondering why no funding has gone into NIAID for XMRV research? Is there something we can do about it? How about our advocates. I believe the only grants so far have gone to NCI for research on the possible prostate cancer connection. XMRV is a retrovirus, so is HIV which receives grant money through through NIAID. It shouldn't matter if a person has cancer, CFS, Fibromyalgia, or something else. If anyone tests positive for XMRV then research funding should be made available regardless. Especially since it may be transmissable.

What can we do to try and make this happen? My thoughts were to write a letter and send it to all our congressmen asking for funding. Any other suggestions?

Robyn

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Some talking points derived from thoughts Dr. Mikovits expressed to me in an email:

MAKE YOUR VOICE HEARD BY YOUR GOVERNMENT!

Ask why the NIAID is not allocating money for the more than 10 million Americans infected with XMRV while spending billions on the less than 1 million Americans infected with HIV.

Demand that NIAID immediately put resources into XMRV, an HIV-like virus that is destroying American families. After all, these are our tax dollars being allocated.

XMRV is real. Every infected individual and family deserves the same attention that an HIV infected individual or cancer patient receives.

XMRV is a new human infectious retrovirus which is in the blood and can infect anyone.

WPI, NCI and CC did the most rigorous research possible to show that XMRV is associated with CFS. As taxpayers, we need to demand that our government not deny us for one more day!
 
Thank you Stuart for these Fauci comments at Osler's web. whenever i need to get my blood pressure readings up in the stratospheric "let's have a stroke" range
i remember my 23 years of trying to fight the power at NIH. My father was a lobbyist in D.C. when i collapsed with what was Lyme disease triggered,
CEBV, later called "CFS" and what most of us want called "M.E."
he knew some top people at NIH. they sent me to Steven Strauss. I was totally bedridden, my throat was so raw i could barely swallow. i lived on fresh juices,
and protein shakes, because i could barely chew. and Strauss finally called me at my parents home one day. he said that he was "really tired....because i just got off a plane from Italy. i was at a conference studying a REAL disease (his emphasis, not mine) called HIV.....maybe you have heard of it?" I answered that i had fallen ill in San Francisco, the heart of the HIV epidemic and i was VERY familiar with it. a neighbor of mine had just passed away i told him. and he worked up until six weeks before he died! and i can not make it up the steps to eat a meal sitting upright on a GOOD day". We spoke for 5 minutes or so. he was VERY condescending....extremely so. and then he finally said, "Well, i wish i could help you, but i don't have anything to offer you...so GOOD LUCK!" I was shocked and saddened. this guy was supposedly the NIH "go to guy" on CFS... and he hung up on me..without a single suggestion....of what to do...
over the next years
as i slowly gained enough strength to leave the house once or twice a year to attend a government meeting on the mysterious CFS, i often would encounter
Strauss at the NIH. He was always the same. arrogant. smug. and definitely treated us like a piece of dog manure stuck to his shoe...
once we were allowed to attend a meeting of the possible changes of the notorious awful HOLMES Criteria aka the 1988 decision to change from CEBV to CFS,
and they had a white board with room for many suggestions on how many symptoms they wanted to include in the upcoming 1994 revision. and they had researchers from all over the world in this one little room on the GIANT NIH campus. the place is so big that it has it's own zip code! no joke!
. eventually they put up about 40 symptoms including "poor sleep", muscle pain, exhaustion, catches every cold that comes around, aching all over, short temper, multiple viruses, sensitivity to light, sound, smell, etc. i seem to remember about 40 symptoms listed..
they wanted to keep the six month time period, because anyone could have these symptoms for a short period of time.... and after 8 hours of going back and forth. Straus got up and erased EVERY symptom but fatigue.....he had NO interest in anything else. he left the six months and the word fatigue...and he was like a
little Napoleonic czar. he said something like "This is what it is going to be....." and then he said it was getting late. and that some of our international friends had to catch a plane..and he adjourned the meeting. it was just a complete lack of intellectual curiosity of how many people had gotten SOOO sick, and remained so damn sick and he just seemed like he couldn't care less. I am glad he is where he is, and i wish i could have helped him get there sooner..and when you read Hillary's comments
from Fauci, it sounds like he deserves to join Strauss....so go to http://oslersweb.com/blog.htm?post=693814 and read it and weep!
 

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