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Showing posts with label WPI. Show all posts
Showing posts with label WPI. Show all posts

Tuesday, November 1, 2011

#120~ Nevada Newsmakers Annette Whittemore Interview–Transcript



Following is the transcript of the October 26, 2011 Nevada Newsmakers interview with Annette Whittemore, for those of us that have difficulty with online video:

Sam Shad: There have been a lot of things swirling around and one of the reasons I wanted to have you on this program today is to clear up from what are rumor and innuendo to what are actual facts concerning the institute, and concerning the publication in Science Magazine of the study of a couple of years ago. Bring us up to date on exactly what’s going on. 

Annette: Well first of all Sam thank you so much for letting me come in and talk to you today because I know so many of the people out there that are suffering want to be reassured, and I think that that’s the most important thing today that we talk about from a very calm perspective of the work that is still going on at the institute. And you’re right, there have been, a lot of questions that have, that still remain unanswered about whether or not there is a retrovirus that’s associated with individuals who have this disease and many other diseases. And, I can just tell you that the work is still promising, that we are still headed down that direction very very methodically, and in an attempt to actually prove ourselves wrong. And so far we’ve been unable to do that when it comes to human tissue. But there’s several experiments that are left to be done, and so I can just say that we are still thinking along those lines, still looking very much at all pathogen possibilities, looking at the immune system deficits, and also characterizing the information. So, we’re very very much involved. There’s a study that will be starting November 1st in which we will literally be testing one lab against the other, looking at different methods, and determining which methods are actually the most accurate when looking for pathogens such as a retrovirus. 

Sam: Now, when the article first came out in Science Magazine, the first study, since then, it wasn’t completely retracted. There was one person out of many that retracted a portion of their work. Could you explain that for us? 

Annette: That’s right. Dr. Silverman found in his laboratory that there was contamination of the samples that he had worked on, and therefore he removed his part, and I think he had one figure in this entire paper. However, there still is a lot of confusion about what we think we’re seeing in the actual patients. And what some of the doctors have described as XMRV, that was actually created in a laboratory. And so, at the end of the day, is there just one XMRV or are there several? And are we looking at a virus that’s completely different in our subset of patients versus the ones that were looked at in the tissues of prostate cancer. So far we’re saying “not completely different”… 

Sam: …and that was what was originally found.. 

Annette: Right, right. It was originally found in Dr. Silverman’s laboratory, and Dr. Silverman originally found it in prostate cancer. And the connection that Dr. Lombardi eventually they ended up looking at this together along with Dr. Mikovits and so it’s still an incredible puzzle. But we’re really excited about the fact that what has happened as a result of this has been so much more attention, so much more funding and a very very serious validation of this illness that just hadn’t occurred before the WPI came along. 

Sam: One of the things that I always like to refer to so the people who are not as familiar with this as we might be, that this is kind of like when they came up with, not a cure, but a way to control AIDS through the retrovirus. It wasn’t a one simple thing. It developed over many many years. And now, AIDS is not a death sentence. 

Annette: Absolutely, and it does take time. A process like this takes so much time to go from discovery to actual medicine within the doctors’ offices. But you know, that is what the WPI is all about. We are very much patient centered. We’re here to provide ultimate treatments that are going to be effective for patients, and we’re here to find the truth. So whatever it is, there..I have..I think we’re really trying to keep our egos out of it, and be able to say that t he most important thing, and to keep remembering it, is the patient, and getting effective treatments. So we need to understand exactly what’s causing the problems, and then we can figure out how to solve those problems. 

Sam: One of the problems is that in the field of medical research, there are tremendous egos. 

Annette: (laugh) yes. And it’s been very very difficult as a result. Sometimes the politics and the science…I think we talked about this before…can be extremely difficult. But in this case I really do believe, and I think the majority of people out there are very very sincere when they say that they’re concerned now about these patients. They’re concerned about getting these answers right, and we’re looking forward to working with them. 

Sam: Alright, let’s take a break. With Annette WHittemore when we come back. 

Sam: And back on Nevada Newsmakers we continue our conversation with Annette Whittemore. She is the founder and president of the Whittemore Peterson Institute. Your research director left who’d been on this program many times. What does this mean for WPI and who is the current research team? 

Annette: Well right now we are moving forward with the same research team that we’ve had all along, but I think a lot of people didn’t realize the depth of that team, and the number of people that are working there. So we’re still doing the exact same thing that we have been doing, in a very organized and collaborative fashion. We’ll miss Dr. Mikovits but Dr. Lombardi is stepping in and taking control, organizing and reprioritizing our studies. 

Sam: Now, you’ve been doing a lot of testing over the last couple of years for XMRV, so I mean, this is a real thing. It’s not that you’re testing for people and it’s not showing up. 

Annette: Well this is, absolutely. And you know, Harvey and I were always very very interested in continuing to ask that question every other month pretty much…is it real, is it infectious, has anybody changed their mind at the NCI, for instance. And I recently was up in Ottawa in a conference and asked two researchers up there, not ones that work with us directly. And they both said it’s real and it’s infectious. The question is, where is it in this population. Is it in this population of individuals, and more importantly, how do we develop the most accurate test that we can, so we can look at this particular virus. But I think again that we don’t want to limit ourselves to one particular virus strain, or one particular virus. We want to continue to keep looking at the question..is there an active retroviral infection in the patients that is coming from outside, rather than is there an actual endogenous or internal retrovirus that is becoming active. And you know this is exciting, it’s very very very complicated, and I don’t want to pretend at all to be a scientist. I get the, I’m so fortunate to be able to listen to all of this and be able to talk to you about it, but you know I’m a wife. 

Sam: You’ve become a sponge for this information. You’ve absorbed it and passed it on. But it’s interesting as time has developed now that you’re seeing that it may take more than one form. 

Annette: Absolutely. You know we see that, I like to tell some of the patients this, that we see the head … my understanding is that we see the head, we see the tail basically, if we were to see an animal…as a virus…but we don’t see the entire body. We’re not sure what’s going on, so the next step really is to get this material and get it deep sequenced so that we can fully characterize what it is that we’re seeing. 

Sam: One of the things, you know, in this economy obviously everybody’s taking a huge financial hit. But NV Energy, the power company in Nevada really stepped up to the plate with a huge donation. 

Annette: They absolutely did. They were phenomenal. Recently they donated a hundred thousand dollars to the cause. We’ve had Vivint and Chase Community Giving which are online community voting grant programs. I think we’ve raised about a hundred eighty five thousand dollars through that. And then just recently we had our fundraiser at the Atlantis. The Farahis who hosted that event were just phenomenal and they even donated back the proceeds from the event. 

Sam: That was here in Reno 

Annette: That was here in Reno, in September. I’ve got to say it was one of the best events we’ve ever had. There was so much love in that room. And even all the way down to the individual who came out from Nashville, Suzi Oravec, and gave her time, donated her time to provide music for all of us. It was an outstanding evening. 

Sam: Now, you started out as an ordinary mom. I shouldn’t say ordinary mom..a mom..
Annette:…Mom of 5 children 

Sam:…you were a spectacular mom. But your daughter Andrea contracted this. And when you were last on the program, you were saying that the treatments that are coming from the clinic are, were helping her. Is she still progressing in a good direction? 

Annette: She is. And you know we’re just really very very thankful that that’s occurred. And we’re trying very very hard to take a look at that, and Andrea thank goodness is willing to be a donor so that we can frequently check to see what are the differences between the times that she’s ill and the times that she’s well so that we can determine what is it exactly that’s going on, what are the treatments that are being most helpful, and why. We really don’t have all those answers yet. Those are things that we’re studying and I guess I’m just happy that she’s close by and she’s willing to donate her blood to that particular research. 

Sam: How are you being helped at this point by the National Institute of Health? Are they being helpful at this point? 


Annette: Well I think they are, because they’ve got a lot of researchers internally that are taking a look at this. And beneath all of the controversies that are going on in this particular virus, there’s some really good work. There’s some solid work that’s coming out. Not long ago there was a paper that said XMRV can infect neuronal cells for instance, or neurons, in the brain. And that was a key paper. I think there was a paper that also explained how easily it was transmitted, which would be, it’s very very unusual that a retrovirus could be transmitted potentially airborne. So there are some very interesting facts, and some good research is going on inside the NIH on this particular virus right now. 

Sam: Alright, so I always like to ask you to tell the folks out there who are watching, literally all over the world, what your advice is to them about where everything sits at this point in time. 

Annette: Well I think my best advice is to be able to remain calm, and to be reassured that the changes don’t mean that anyone’s going away, or that any way our commitment has been lessened. Or that the commitment of others has been lessened. In fact, it’s just the opposite. So there are more federal dollars today going into research in this particular disease. There are more individuals committed. An individual by the name of Glen Hutchins just committed ten million dollars to what he calls the Fatigue Initiative, and he’s brought new researchers into the field. Dr. Peterson has started a foundation and brought additional researchers into the field. So we’ve got some outstanding retrovirologists and virologists and immunologists that were never in this field before, that committed to helping us discover the answers. That is really the message… 

Sam: What’s your level of optimism over the next couple of years? 

Annette: Oh my goodness. I’ve got to say that we are making progress at a rate that is phenomenal. And ..on the one hand. On the other hand, we have to be patient. This is not an overnight process. I don’t expect it’ll take 20 years. I’m too impatient for that and I don’t think that’s appropriate. But it’s not going to happen tomorrow. So people need to sit back, take a deep breath, be reassured, and be hopeful. But, you know, let’s watch, let’s see what happens. Let’s be right about this. Let’s be good about this. 

Sam: That’s the most important thing, to be right about it. Always a pleasure. Thank you so much for being here.

***
Reprinted with gratitude and permission from Khaly:
http://cfsuntied.com/blog2/2011/10/27/nevada-newsmakers-annette-whittemore-interviewtranscript/

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Thursday, July 21, 2011

#118~ Why VIVINT "IS" Important NOW !

Before I go into what needs to be done and how, I would like to give a little background to those that may have either forgotten OR are new to this Battle and history OR are stuck in one mindset and need a new perspective.


Dr. Jamie Deckoff-Jones is resuming her OWN Practice and has moved back to Hawaii and her opinions are ONLY that, and she even states that.. Many KEEP ignoring the rest of the patients all over the world that do not live in the USA ?

Please ask WHY many pretend like this is still ONLY about Incline Village and "the non-defining and everchanging naming" done the CDC ?

This is NOW a WORLD ISSUE .. Why would we still be only looking for "regular pneumonia" if many others had "pneumocystis pneumonia" and then they discovered that they also had a retrovirus ? Not everyone is still stuck in Incline Village and diseases/viruses of whatever kind mutate with time, esp. 30 yrs, and YES just like illegal immigrants can cross country borders and even hi-jack a ride on a plane or in a mosquito or tick. If a mosquito can tramit Malaria and West Nile Virus, why should it not be able to pass on a retrovirus after it bites someone that is XMRV+ ? Many methods are being tested and there is a lot more to learn about this very fruitful path that is ALEADY Helping Many.

There is also a thing called new tests and new research resulting in new results and findings.. It's like testing out a new dish to eat and then going home and 30 yrs later trying to re-create it w/o the recipe. IF Elaine DeFreitas had continued her work, whose to say where we would be now ?

Also, we now have this new Retrovirus in 9 countries, testing positive in different labs... with patients with many of these co-infections. IMHO, that is a "game-changer to anyone's immune system" AND  how it will respond to any other incoming disease.

DESPITE ALL OF THE NEGATIVE BS RESEARCH PAPERS THAT EITHER ARE ALL NEGATIVE OR THE ONES THAT COME OUT 0/0......  


Science and Research IS moving beyond CFS and working on The Bigger Inter-Connected Picture. That can also be called Progress and may be Finally getting closer to the REAL Truth~ No matter Where the origin of a particular version/branch of the disease came from.

Many ONLY want ME or Original description of CFS cured, BUT the Original description of CFS despite newer info and research joining many NIDs together showing a connection and now even MORE involvement to a retrovirus FAMILY ! But THAT is not the issue right now.. THAT's the part we have moved on from, because MORE Evidence is showing how much more this interconnected web of diseases is effecting our many organ sysyems and many of these illnesses are really triggered by a Master Puppet that then allows the Domino effect and we catch more other things like the things the CDC considers "experimental or not relevant for CFS testing"... BUT they ARE when you are looking at the Bigger PIcture with a Retrovirus in that picture.. 

Sometimes Research locates the tail of the elephant before it locates the trunk. What matters is that they finally locate the elephant in the room.

SOOOOOOOO, with THAT said.. it is of UTMOST Urgency that anyone that REALLY Cares fo Help us FIND Trreatment and Cures ASAP after the last 3 decades we have already waited... 





 
 
 
 
 
Please keep voting. We are up against "Invisible children,"and  the "It Gets Better Project", the "Trevor Project". These are all very large charities with huge fan bases. Invisible children won Chase Community Giving 2 years ago. We are in the pacific region with stellar competition. They haven't begun to get out the vote yet. OK ?
 Help WPI by not ONLY VOTING Daily in the VIVINT FB Contest, but  then ALSO Helping to donate up to $50/£30 per TOTAL during the Contest ...
"Matching Periods" and VIVINT will Match monies up to $2,500 total.
First period starts July 21st NOW !! = 5 hours ago !
thru tomorrow July 22nd at midhnight.


You Vote DAILY BY~
Going here Daily until thr END of August~ PROMISE Now.. OK ?
(1)http://www.facebook.com/VivintHome (click LIKE)

(3)http://www.vivint.com/givesbackproject/charity/769
(2) click "Login to Facebook", then click (VOTE)

Really~ Help NOW !! today and tomorrow !!
Please consider donating to the Whittemore Peterson Institute between midnight on July 21 ( 5 hours ago) and 11:59pm on July 22. If you do this, Vivint will match your donation up to $50/£30. You can donate here :http://www.vivint.com/givesbac​kproject/charity/769

Please Help advance Research into ALL of these NID illnesses and Help people from ALL over the world benefit from the New Research that is being done and the New Clinic that will be OPENING August First ♥
Remember that the WPI needs your daily vote!    Please post your vote for family and your friends to see.
We NEED them and ALL of them to Vote also !
Please ask them, pretty please ♥

If they have co-workers that will also Help US because it's the PROPER THNG to do the Help ERADICATE THIS DISEASES, because ONLY this Private money right now has the ability because of the World's money Deficit issues to help with  this MOST Important Research.

You KNOW the "Talking Points" and how to deliver them in a polite way that will make them realise that this is to also be Helping them so they con't get these diseases.. 
Remind them of the MANY Diseases that are being Linked and ALREADY Helped.
Thank you!!!!
 *********************************************
Beyond that~ PLease "Mark Your Calendars" for  Sept 15th for the 7th Annual
"I Hope You Dance" Gala FundRaiser Benefit for the WPI.












Now **GO TEAM GO**

Thank YOU ALL and Bless you ALL ♥

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Friday, June 10, 2011

#117~ "The FINAL Betrayal"


Posted with the permission of the author Danny Ze-dog.


I'm too sick at the moment to start my own blog, and even if I had one I wouldn't be able to say what I'd really like to the way I'd like to.  But in light of months of following the scientific (and anti-scientific) developments in the XMRV story, and given that it is XMRV Blog Week, I feel the need to say something.  So here it is.

I don't know for certain whether XMRV and any related MRVs cause ME/CFS, or are co-causes or co-factors, but neither does any other scientist.  I don't know what role it plays in ME/CFS, but neither does any other scientist.

I know this: I will not spend the rest of my life sick or die young because some researchers and research journals made a political decision to "close the door" on the MRV-CFS association before it was appropriately investigated.  
I want a true replication study NOW.

I want 'science' journals to stop publishing negative studies by authors who haven't used clinically validated assays to detect XMRV.  I want 'scientists' to stop claiming that non-replication studies ARE replication studies.  I want any researcher, journal editor, or 'science blogger'  who claims that true replication isn't necessary in science to be forced to seek alternative forms of employment.  I want an investigation by the Department of Health and Human Services into why the NIH's tiny CFS grant review panel has turned down a series of grant applications by the WPI.

I want at least one sliver of justice for millions of sick people who have had none.  If nothing else, we should have the benefit of supposedly dispassionate, objective science.  We were raised to believe that science is the backbone of modern civilization, and the last pure thing left in a world rife with politics.  If we cannot even get THAT without political interference, then even the highest court of appeal is corrupt.  

For well over two decades we have trusted that, at some point, the system that was ostensibly built for us will finally work in our favor.  At what point do we decide as a community that it clearly will not?  And at what point will we protest en masse that our rights as citizens and as human beings are being denied by medical, "healthcare", political, and scientific establishments?

The most blatant recent example, and the most immediately crucial issue, is the organized attempt to bury XMRV-CFS research.  With whatever energy we have, we need to fight to stop that from happening.  NOW.  We need to let those who would bury it, or let it be buried, know that we will not tolerate this.  We need to let 'advocacy' organizations know that they should either support us in this endeavor or stop posing as advocates and get the hell out of the way.  We need to strategize ways that we as patients and their carers can have a real impact on the scientific institutions and policy-makers that are normally walled off from us, and on the media that increasingly serves only as a mouthpiece for the 'official sources' with the best media connections.  If the high-profile discovery of a potentially pathogenic gammaretrovirus that may infect at least 4% of the population can be whitewashed from the memory of science and history, so can - and will - that of any other pathogen, be it HHV-6, Lyme, or anything else. 

This isn't just an issue for people who support the XMRV hypothesis - it is an issue for everyone who wants good science to be done on this disease, now or ever.    

*************************************


"Well said" Danny, and Thank YOU for letting me post your statement here.. There is MUCH Truth IN it ♥



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Tuesday, May 17, 2011

#115~ VOTE: Help WPI + us at Chase Giving



PROJECT: GET OUT THE VOTE FOR  WPI
May 18th  9pm (PST) thru May 26th 9pm (PST) USA


Dear Family and Friends and Yet-to-Be friends~

I have a Huge Favor to ask of all of the readers of this blog. Please know that this next week is very important to millions of people that need WPI to be able to continue helping us and doing their research. 

I sincerely beg each and every one of you to participate and "call in" any favor you can from all friends and family and ask them to ask their friends and family so we can get as many votes as possible to help the research continue. 

These are indeed dire times and the opportunity of this Grant has been placed before us, which ONLY takes a FREE VOTE aka ONE CLICK is Incredible and it is now our turn to step up to the plate and just do this one this one thing from around the world to help WPI and all of us with any Neuro Immune Disease.
I personally will be sending out this blog, emails, tweets and phone calls to my friends "that I Know Care" and even those I don't and ask them to participate and send out emails and post on their FB page about Voting for WPI and the directions in a brief paragraph, after we have created it once the contest officially opens.. Ask them to look for it and please help. 

If you belong to a church ask your friends to help, make an announcement, talk to your minister/priest or any clubs you might belong to, and even all of your local support groups. 

Get Creative and ideas WILL come to you of people and places to enlist for this one little thing we can do from around the world to help WPI the Facebook.
Thanks and bless every one of you that decides to help and participate. ♥


The Whittemore Peterson Institute (WPI) is 1 out of 100 charities that won a $25,000.00 grant during the first round of Chase Community Giving. Now, WPI is competing for a $500,000.00 grant, and you can help! Please cast your vote, ask your Facebook friends to vote, and spread the word about the important work of WPI. If you have a Facebook account, please cast your vote for WPI by following the instructions below beginning May 18th at 9 pm PST through May 26th at 9 pm PST.


STEP-BY-STEP Instructions:


1. From your Facebook page, go to Chase Community Giving:
http://www.facebook.com/ChaseCommunityGiving.


2. Join Chase Community Giving by clicking on the "Like" button.


3. Do a Chase Giving "search" for Whittemore Peterson Institute for Neuro-Immune Disease. (only including this in case Chase chages the link for the 2nd Round..
I know how to spell "assume" and always like to Have a Plan B in case the link below doesn't work for some reason, OK ? )


4. Cast your vote for WPI by clicking the "Vote Now!" button.


5. Please remember our neuro-immune disease community and share in the Love and Giving by voting for other organizations who speak to your heart -- you can vote for up to 5 organizations per Facebook account.


CHASE COMMUNITY GIVING: BIG IDEA


The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) was created to answer a critical need for discovery and medical treatments for those with serious illnesses that impact the body and the brain. These often debilitating and life-long diseases, including M.E., CFS, fibromyalgia, post Lyme disease, GWI and Autism, have too few medical solutions. WPI continues to make significant strides through the work of our innovative research program. Translating novel research into effective patient treatments for millions around the world will begin with the opening of our 10,000 sq. ft. medical facility. Here we can engage in revealing clinical trials and provide onsite care to those who are unable to afford care. We require funding for initial expenses and to establish a patient fund. 

WPI’s commitment to discovery has already inspired much hope worldwide. 

*** Now it is time to put hope into action by offering meaningful patient care to these under-served populations.***


Please place this message at then end of each email for the whole next week:


Please take a moment to vote and ask your friends and family to vote too!!! Chase Community Giving is giving us a chance to win a $500,000.00 grant for the Whittemore Peterson Institute.


Here are two links. 
Voting begins May 18th at 9 pm PST and ends May 25th at 9 pm PST, so mark your calendars.


Current FB- WPI - Chase Giving page
http://apps.facebook.com/chasecommunitygiving/charities/205904991-whittemore-peterson-institute-fo?m=410af99a


A shortened link to use for Tweeting that will also take you to the same WPI @ChaseGiving FB site as above, so Use this for Tweeting, OK

Please share this video with your friends that don't know anything about ANY Neuro Immune Diseases and Help them understand it's about MANY diseases and maybe this will help them Understand the URGENCY of this Chase Giving opportunity we have been given This WEEK.


Bless you ALL and Thanks for anything you can do to Help...

TOGETHER, we can Help WPI and WIN this one, I just feel it...


So **GO Team GO**  and ♥Hugs♥ to all.....




We have this ONE Week to Help Create this Miracle of Funding that will mean SO Much.... Let's DO it ♥

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Monday, April 18, 2011

#111~ Dear CFSAC~ One last time- Getter' DONE !



Dear Dr.'s Wanda Jones , Chair Chris Snell and all CFSACommittee members and attendees,

I HAD wanted to be Polite and respectful in this letter but the NIH meeting has brought out my "Outside Voice" 
cuz the WE patients are ticked off and as the Movie "Network" says~ "We are Mad as Hell and are NOT going to Take it ANY MORE" Got it ? Is that Clear ?
 
Do you need it in a few more languages ? Is everyone putting down the blackberries long enough to even read this??
Remember you ARE on Camera and all nose-picking Will be ( and has been)  observed.... Wake UP you ARE on Camera and this should NOT be another version of the World's Funniest Videos of 2011." 

I had been wanting to be in a Happy Mood when I wrote this letter but after the actions of Dr.'s Coffin and Vernon at the NIH State of Knowledge Workshop, I must say I am extremely Upset and in disbelief that #1~ Dr Vernon does NOT represent us in ANY WAY and the patients do NOT want her to utter "ONE WORD" to us or ABOUT US. Period. We have even created a Petition to that effect that has already gathered many signatures.. 
 
Who died and made her the MC at the end of the meeting ?  And she demonstrated her lack of courtesy when she was interrupting "what the viewing audience was seeing as a VERY Important discussion between 2 researchers"... How DARE Her ?
We have waited almost 30 years to HEAR these discussions.... Shame on Dr Vernon........... "Black Mark Given." by MANY !!!

Dr. Monroe of the CDC's  "poor Joke" at the NIH about not wanting to miss his plane was NOT Lost on the patients...
Especially, since it was the CDC that shot down Elaine DeFeitas in 1990 when another Retrovirus was in the early stages of being linked with ME/CFS.
 
Elaine made her BLT with Best Foods Mayo and the CDC decided to use Miracle Whip> Guess what> Garbage IN Garbage OUT> Then, they claim that "they can't replicate her findings".so... . She invites them UP to her lab to watch every step she takes.. and their excuse is that "they can't afford the 2 plane tickets to get up there." PALEESE... How Lame> When they ARE the ones that have the Name" Centers for Disease CONTOL and Prevention. Did they FORGET THAT ???
Hey, CDC, Dr Monroe, How MUCH IS YOUR LIFE WORTH? A plane ticket ???
Give me a fricken break.. and for THAT we go another 20 years without Help or Treatment ?
Right now the CDC is an acronym for us that stands for "Can't Detect CR*#" = until they start acting with INTEGRITY toward their citizens... They TRULY ARE a Worldwide Embarrassment to the USA.

And I am equally dismayed and repulsed and almost made physically SICK, by Dr. Coffin's wish to discontinue all XMRV Research... How DARE He...??
A REAL Research Scientist would WANT to Keep Looking > when they already have Thousands of patients that ARE Testing Positive, either by PCR or Serology or Culture 
and DO have antibodies and>  Hello many were sick before Dr Collins 1992 date, whatever that was about... We have been sick since the mid 1980's~ Was he NOT even listening ??? There are NOW 7 cohorts, in 7 countries that have tested XMRV+ from different labs... So his arguments are MUTE points... Maybe he needs to buy a Hearing AID> poor baby should we chip in to buy him one ??
 
I think NOT, he has wasted enough of our money and can't replicate anything because HIS fricken lab is the one that is contaminated..
I respected him in the beginning, but he has now lost all of our respect... Until IF and When he chooses to EARN it back...
by Continue Researching what we already Have> a retrovirus called XMRV, and starts doing the proper tests and using the proper proteins.
I don't think he had his hearing Aid ON "At ALL" during the NIH SoK unless someone other than Dr Judy was talking...
Not too much Prejudiced there, especially to have the cajones to call for Research to STOP when we are sick with it... Disgusting !!!
Maybe it is True ? That "That Takes Ovaries" and that is WHY Only Elaine DeFrietas and Annette Whittemore and now Dr Judy Mikovits been the ONLY ones to NOT worry about their cajones and have learned to Speak UP FOR THE Patients...
Which is what you, the CFSAC,  SHOULD BE DOING NOW.......................................

We are getting the feeling that either:
#1) "Some of these Researchers" do NOT Care about the Truth...........Thank you Dr Coffin> aptly named I might say.....
            Those that DO Care, we could Easily tell who they are and "We Thank Them Whole-Heartedly" ♥
#2) That our Government and this committee does not really care about us or the millions around the world being effected.
#3) that this government is being penny-wise and pound Foolish, because we DO want our Lived Back like Robert Miller Said and we would LOVE to be paying Taxes and helping the deficit.. but many of us because the lack of knowledge after YOUR and YES I mean ALL of YOU> is literally embarrassing and you have NOT Cared one iota about REALLY Helping us~ or you would have Meant what you have said and Done something about it !!! All we get here, until NOW,  literally IS Empty Words..

Where ARE your Consciouses ? You very well KNOW How sick we are and you Demand NOTHING >>>>>>>>>>>>>>
You KNOW as Dr.'s Leonard Jason and Chris Snell pointed out Extremely Well at the NIH> that we DO HAVE 
"Post Exertion Malaise".. that is a HUGE Part of what sets us apart from those that only have depression..
The Canadian Case Criteria KNOW it , We ALL Know it, Many Drs KNOW it, now its time for the CDC to KNOW it and OWN it, Period.
 
Was Anyone Listening ???? Did you listen about the OI/POTS parts that effects our Oxygen intake and our ability to stand UP ?? and YES>effects our hearts ??

I hereby not only request, but a an insulted 17 year hospital worker that had to quit my job because of this illness 
and now cant even get Disability because it took TOO Fricken Long to get a Diagnosis, which was NOT MY Fault cuz no Doctors have been educated about us,
but I DEMAND that this committee Send a message to the CDC in their STRONGEST Language to Cease and Desist with the infantile psychobabble that they have 
on their website about this illness and start acting and behaving like REAL Scientists and Take DOWN THAT "GET" junk that Physically HARMS our hearts and 
many of us have already had therapy because of the abuse of our Dr's and the CDC "not believing us" for 20+ YEARS... SO THEY HAVE ALSO INFLICTED
PTSD on many of us, Yet we Fight ON, because we KNOW the Truth and the world is also learning the Truth... that the CDC and NHS are Puppets
of the Psych Dept and the Insurance companies... We have had enough of this.. and you WONDER WHY our the Health Coverage in the country sucks ?

Emory University wrote a paper A YEAR AGO about those of us infected with XMRV+ and co-infections and What Meds would help us...
Where the Bleep are these Drug Trials ??? Magic Johnson is FINE on his meds and God KNOWS you are NOT letting us have any meds to get better so we can Have our Lives back and be Functional citizens again and get jobs and Pay taxes... What are you hiding ???Who are you covering-UP ??
WHY DO YOU WANT US to be SICK ? OH, so you can carry on this charade of doing non-relevant research for another 25+ years... WRONG !!!!

Like Dr Ruscetti said a month ago... If this were HIV this would be 1983.......
Wake UP>  The Band IS Playing ON......... and you are NOT getting us any help NOR cleaning the blood supply...
You should all be ashamed of yourselves that you have let this Crime against Humanity GO ON THIS LONG>...

It is now World-wide and not only within the confines of the USA.

I was was Proud working in a hospital for 17 years that REALLY Cared about their Patients like Dr Bateman does..
and like WPI and Dr Judy Mikovits do.... but I have seen NO medical ethics displayed here recently..
I have felt NO Urgency to Help those with a RETROVIRUS and co-infections Get Treatment... NOW
Shame on ALL of you>>>>>>>>>>>>>>>>>>>>
 
You are literally watching as Rome burns or better yet as this Holocaust plays out and kills another Generation...
We ARE on our 3rd Generation now and the Family Trees are showing up things like Lymphoma
and Autism..Breast Cancer and oh yeah >  Thanks My mom died from Lymphoma and I have XMRV...
 and you play your fiddles..... and yet YOU collect your pay checks..
GIVE YOUR PAYCHECKS BACK TO PAY OFF THE DEFICIT OR "DO SOMETHING TO HELP US" > NOW

YOU HAVE 2 DAYS TO GET IT RIGHT, THIS TIME... PLEASE....

EARN YOUR PAYCHECKS... Speak UP and actually DO something to get the Huge Ball Rolling to get the CDC off their Butts
and the FDA off their Butts and get us some Clinical Trials... We have "ToDo Lists" we are NOT simply depressed
like the CDC website seems to think.... That website is an atrocity...and an embarrassment to the citizens of the USA.
If they have NO Respect for us, WHY on God's Green earth should we Respect them ??

If they don't believe XMRV is Real ? are they willing to receive a transfusion of blood tainted with it ???
This ostrich game everyone is playing is getting really OLD>...Older than I am... and the World IS seeing Right thru it..

The DHHS>NIH can't Afford any Centers of Excellence> Hello> The WPI already Exists... Help them dang it !!!!

I also hereby "Officially request that the NIH Create an Additional SEP for the study of XMRV~ NOW" >
Cuz otherwise there is NO Place that Grants can be written and sent to study this,... unless they come in 
a back door thru some other of the MANY co-infections and that is BS> to the Hilt...
PLEASE Tell me> HOW MANY PEOPLE BEING SICK CONSTITUTE AND EPIDEMIC OR PANDEMIC ??
NOW answer truthfully here ??? Please....

There are at least 17 million worldwide in this new 21st, Airplane bug hitch-hicking era Century and that's
ONLY including the 20% that they say HAVE been diagnosed...
How about the Millions with Lyme that are testing XMRV+ ?
How about the 25% of Breast Cancer samples that are also testing XMRV+ ?
How about those with OI/POTS and XMRV ?
How about those with NO adrenal function or Thyroid function and XMRV ?
How about those on our Family Trees that now have Autism ?
How about all of the families brought to Bankruptsy trying to care for their "sick member" ??
How about the thousands that not ONLY do not HAVE any medical coverage OR Disability, 
but have NO ONE to care for them and are Bedridden ?
Is the USA ~ Really a 3rd World country again ?? 
That seems to be the way you treat your citizens...

Dr Jones, How much is your Life worth to you ?
Dr Snell, How would you feel if you were bedridden for YEARS but your brain STILL worked fine ?
Where are the "Job Fairs" for the bedridden ????
We can't get Disability cuz the Dr's didn't know what we had..
We can't get jobs that aren't scams from home in bed..
WHAT do you expect us to LIve on and How do you expect us to Exist ?
And we were Hospital workers, professionals, professors, etc, Please Help us..
Where is your consciouses ???

We Demand a NIH SEP for the Research of XMRV and all cohorts connected with it NOW< Period.
 
If you do NOT make this a recommendation to Sec. Sebilius than we WILL KNOW where the CFSAC stands
and how much they Care NOT about the thousands of us that are NOT getting ANY Treatment or medical care
and are being simply left here to die.... so put THAT on your conscious... OK ?
HOW MANY YEARS MUST WE BEG FOR THE SAME THING ??
Do your salaries NOT Pay you enough to Buy Hearing aids ???

At this point , I really do NOT give a Rats A*# where or How we got it, but we HAVE IT and are testing Positive for it and HAVE Antibodies> Hello !!!
YES OLD ANTIBODIES> so not obtained after 1992....capiche ??
Sick Before Coffin's 1992 date = a Mute Point..  What's your Next excuse ?? For NOT Helping us ??
Continue your other Research, but for Gosh Sakes,  "KEEP Researching the thing we ARE and Have antibodies for"  = DUH 

The poor Medical MDs that that you put on the front lines to treat us are the ones that catch ALL of the FLack ALL Year Long...
SHAME ON YOU> EDUCATE THEM... WITH OUR BIO-MARKERS SO THEY CAN KNOW WHAT TO TEST FOR...
 
My CD4CD8 is off and backwards, I have had HSV since I was 5, had EBV/Mono when I was 19, but to went away
and I was able to get married and work in the hospital for 17 years until I had my Triggering Event...
I had  HIGH Fever "Sudden ONset" with a low grade fever that last for over 2 years....
I was on the couch living alone during that period. I could not even go to the hospital to say Good-bye to
My closest thing to a sister that was dying from AIDS as NO ONE could tell me what I had...
My EBV at the tome was very LOW> so NO it was NOT EBV> Get it ??


It had taken me 23 years to even obtain an written letter from my Dr that says I have > OH yes..  CFIDS and it is Spelled out... as well as OI< but she forgot the POTS part... and YES I have my own BP cuff and I use to work in a BP clinic, so I know how to take it. My thyroid gland is shot and so are my adrenals now.. so I must take expensive meds to supplement what my body can not make.... Where is ANY Mention of the deterioration of the body that THIS ILLNESS COSTS us so we can KNOW "what NOT to do" or "What to do to Help ourselves" = NO Where !!!
 
If you had DONE or Listened to Elaine DeFreitas maybe many of us would NOT even BE this sick now...
So you NOW have a Second  Chance to get it Right... Your Center of Excellence is WPI>
Get that through your Brain Please.. They are the ONLY one to already be using Translational Medicine
which Dr Vernon to her detraction, tried to adopt and claim and a New idea, when WPI was already set UP that way 5 years ago !!! Vernon, maybe YOU need some Hearing Aids also, cuz we will NOT put up with your Revisionist History either.. capiche ???

Vernon talk about Everything that XMRV has done to bring ME/CFS into the Light of the Press and Scientists was done by the WPI not simply XMRV... sheez.... XMRV did not research anything. XMRV did NOT bring together the NCI and Cleveland Clinic, and it was the WPI that with them got the Science paper Published.. Vernon you can NOT claim what is not yours and you jealousy of them is showing as Green and your lack of knowledge and Expertise...

Last time I wrote you, I thought it might be my last, but NO Thanks to YOU I have found HOPE in WPI and learned a few things to help and my money has not quiet run out YET
so I am not on the streets YET, but I do NOT have enough to last until I am 66, so I will either die, or get meds, or lose the house I PAID for like a good citizens, and will probably have to go live in my trailer God knows where cuz I can't even drive to pull it anymore.. I use to travel to do my Nature photography in it.. to take me away from the stress of the  hospital politics during the early days of HIV and AIDS....

but here we are again.... "And The Band PLays ON... 


PLEASE REMEMBER THE

WORLD IS WATCHING YOU AND ALL OF THESE MEETINGS AND THEY KNOW  WHETHER YOU CARE OR ARE ACTING SPINELESS.
 
For God's Sake DO something to Help us... Help those NOW that are XMRV+ Plus co-infections and Please get the Psychobabble OUT of the CDC's website and let's start acting like Adults here and Clean the Fricken Public Blood Supply NOW> NOT Years from now.. 
You are continuing to commit Crimes Against Humanity by your "Lack of Action." Period.

Own your Cajones or Ovaries and STand UP for what is Right... This Time NOW
Even Dr's Bell's Lyndonville kids tested 70% Positive for XMRV~
You want our blood FINE we'll donate it to you Personally~
You ARE Taking our lives... so what else do you want ?

We will NOT shut up for you or anyone at this point...
We have had enough > Got it... 
We will speak up until our dying Day or until you get us some Meds to Help us  as you are suppose to do !!!

It's Your choice... Give us Meds and DO More Research including a SEP for XMRV or we WILL start being heard in more ways than Egypt planned for...
Many around the world are not taking what is handed out bay their dictators any more and you have been not representing us effectively for the last 20 years.. nor the CDC/NIH for the last 30 years.......while "The Band IS PLaying ON>.

So HERE"s your chance NOW> Do it and show us what you are made of....
Cuz your actions will show more than your mere lip service
that we have been getting for decades.. while children die and the 3rd Generation gets infected...

WAKE UP and PLease SPEAK UP> NOW
The world is watching you and what you say and DO.............

Sadly, I remain,  w/o hope unless you create a XMRV SEP and get us Help........
I might remain a while longer but I will NOT go down quietly and will broadcast to everyone, everything this government, AND every other Gov't  has NOT done to take care of this NOW worldwide PANDEMIC. Wake UP !!

I had the Test, Now I need the meds..........
"Kill/Incapacitate the BIG BUG, then deal with the co-infections"
or does THAT make TOO Much sense ?



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Friday, April 1, 2011

#109~ The Birth of "Advocates 4 Answers"


OH Happy Day ♥ Happy Birthday Dr Judy  
and for the birth of "Advocates 4 Answers"

Happy April 1st everyone... and it's NO Fools Joke !

Please Help us wish our very own, Dr Judy Mikovits' Birthday today !!  
Birthday Greetings  for Dr. Judy maybe emailed HERE

Also, Congratulations to Dr. Judy in her New Position at WPI as the 
Director of Translational Research. What a perfect fit for her and blessing for WPI and the patients.

What a Perfect Day to Launch the New Website and New Advocacy Campaign  
for Neuro-Immune Diseases. 

Dr. Judy and WPI epitomize the essence of real
science, passion and compassion~ along with now a new advocacy campaign ~























 The website is UP and Available NOW for you to Sign the Guestbook, so you can Help be one of the "Advocates 4 Answers" and becoming a part of WPI's "May Awareness Month" for neuro-immune disease.
 
Throughout the month of May, we are inviting you to join us in raising awareness and funds for the important research into the underlying causes of neuro-immune diseases. Every day there will be an opportunity to show your support. By signing our guest book, you are pledging that you want to be a part of our movement and will participate at a level you are comfortable with to show your support.

You will receive an email prior to May 1 to help get you started. 

You will also be show the link for the New Facebook page link for this Campaign also...

Be an "Advocate 4 Answers" and sign up today~ by going here ~

Please SHARE this post and  get everyone you know 
friends, family, and care-takers to help and participate. 


We look forward to an Exciting 2 months of Advocacy and Beyond......

Mobilize and "Join Our Energies TOGETHER" so we can be Positive Source for advocacy at this much needed time with all of the recent research developments thanks to WPI and our Heroes "on the Reno Hill."

I sincerely look forward to Joining with you ALL and taking part in this 
"much needed" long over-due United Campaign for the millions that these illnesses effects.. 

Its it TIME to Unite behind the diseases and drop any political illusions of us being separate and work with the one place that we already KNOW and TRUST ♥

We are as Powerful as our United Voices.

Our time HAS come.. Let's Grab this Brass Ring and Run with it, OK ?

We are now on our 3rd Generation that is being effected with these illnesses and it is Time NOW for us since the Universe has seen fit to unite us with this technology to help Be "Our Own Voice" ~ 

Please Come Join us... 30 years is long ENOUGH

It is TIME for the People to USE their Voices..



XMRV will NOT Quit and Neither will WE or WPI, OK

















Heartfelt Thanks for Participating and Joining us 
on this New Campaign of Advocacy !

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