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NIH="InsufficientResearch"=DUH !
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Showing posts with label 3rd Human Retrovirus. Show all posts
Showing posts with label 3rd Human Retrovirus. 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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Saturday, May 21, 2011

#116~ URGENT- Get Out The Vote for WPI NOW !!


CRUNCH TIME IS HERE !!!
We NEED at Least 4,000 MORE Votes, folks !!
We are in 7th place ~ that will NOT do.........

In case you haven't yet looked under the rugs and rocks and begged every friend and friends of friends and every orgnization ou  have ever belong to ~ to Help us and if they Belong to Facebook to Vote for WPI for the Chase community Giving to Help us win the $500,000.00 that will be put towards research and develpoping treatments for millions of patients with the many neuro immune diseases.....

NOW is the time to do it, NOT Tomorrow...


The illnesses that all seem to be linked together under this umbrella include many things with ME/CFS being only ONE of them... and there are 17 million of them. Also included are those with Autism and Chronic Lyme Disease and Asperger's, Atypical MS, Fibromyalgia, and they have also been linked with many cancers including lymphoma and some cases of prostate cancer and breast cancer...

Anyone that CARES about Human Life should be VOTING "Right NOW" on Facebook for the Whittemore Peterson Insititute as they are the ONLY one in the Top 7 that has anything to do with Saving and healing Human LIVES that are in danger and people have been suffering for decades... and now a Generation !

While we are doing this, the President and Founder of the WPI, Annette Whittemore, and the Head Translational Medicine Researcher, Dr Judy Mikovits, have both been in the U.K. in London attending the 6th "Invest in ME" Conference whose sub theme this year is

The Way Forward for ME - A Case for Clinical Trials

but  before there can be clinical trials there must be MORE Research $$$ and as we all know thegovernments and states and contries are broke, so this Wonderful Opportunity to WIN this $500,000.00 must NOT be taken Lightly~ Please.. 

THIS IS HUGE 

Today the team went to Belfast for a Conference on Sunday and then they will be returning home on Monday... Please while they are away make them PROUD of us and what we did while they were away... There going around the world Literally to Help us..
Can we do Less to help them Help US ?
They have dedicated the LIVES to Helping us....
Can we not find ways to be EXTRA Creative these next few days to help get another 4,000 Votes ~ Please.. ?

The directions to help are Easy..
Here is a little paragraph that explains how and when you ask your friends and families to even ask their exteneded families and friends please ask them to watch this video that you can include. Here are the directions and the video link ...

Please Help MILLIONS with Neuro Immune Diseases "with 2 clicks."
Voting is open to anyone on Facebook. 

You can vote by going to http://apps.facebook.com/chasecommunitygiving 
Click "like" then locate the Whittemore Peterson Institute by clicking on this link http://bit.ly/mrWckA and Simply VOTE.
Your vote will help them possibly WIN $500.000.00 for Research.

"Please share this" with others and Thx♥

http://www.youtube.com/watch?v=uM8Hs1nuk5I

The government is spending $3.64 a year on just one of these co-infections called ME/CFS... is That what your life is worth ?
Ask Rober Miller, this was his testimony last week at the Federal CFSAC meeting:



Maybe you need to hear a few more testimonies about just this ONE co-infection and WHY we NEED this Research $$$  SO Desperately ~~~



In closing I will wrap up with one more video to show you that  people HAVE DIED FROM THIS Illness that is NOT all in their heads.. Please Help us by getting every teenager you know that is on Facebook to VOTE for WPI because children are getting these illnesses also... I know we can DO THIS but we must REALLY work HARD these next few days... PLEASE....

Remember although thesae videos might only be speaking about ME/CFS and XMRV, that the WPI is also helping Autism, Gulf War Illness ( get every Vet you know to VOTE ALSO) and chronic Lyme of which there are also Millions...
Lest we forget all of the lymphoma cancer patients and all of the families and lives effected by these illnesses which is a LOT MORE than Just the Patients...

PLEASE Remember we need a MINIMUM of another 4,000 Votes to WIN this...
If there are Millions of us sick, WHERE are these votes ?? Find Them Please ~
We BEG you..





More Research can NOT Proceed if we do NOT get this funding...

We must NOT let this Opportunity to Win this Grant slip right through our hands because we did not
"Get OUT The VOTE."
This is a Vote for our Very Lives..

Please everyone from Around the World...
Help us and Vote NOW on Facebook for the Whittemore Peterson Insititute for Neuro Immune Disease on the Chase Community Giving Contest...
Human LIVES are at Stake here...

Please do NOT Let a floral society beat us !! 
I love flowers but we must be alive to enjoy them also....

Thank YOU ♥

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Sunday, April 24, 2011

#113~ 2nd Chance: Pres. Obama Can you Hear Us ?




Pres. Obama, We want you on "Our Dream Team"
Please Help make Our Dream a Reality ♥


Hello everyone~


We NEED to Build Our PR "Dream Team"~ Let's start at the Top with this campaign, OK ?


The other day we the ME/CFS, Neuro-Immune Community of patients, family and care-givers have been given a "rare opportunity".. The wife of a ME/CFS patient actually "got the ear" of the President and a Promise from him that he would contact the NIH about ME/CFS when he got back to Wash. D.C.


So this request is for "ALL of you Everywhere" on ALL Continents, OK ?


OK, "NOW is our Perfect Time" for us to FLOOD President's "inbox" at The White House and make SURE that he either ACTUALLY gets to read one of our written letters, emails, faxes or phone calls, OR if Not then at least his  STAFF WILL Definitely KNOW  that We ARE out here.. and when he asks them to call the NIH, they will also tell him that he has been receiving TONS of correspondence from ALL of the Neuro-Immune Community regarding ME/CFS.


We have been give this chance and we must NOT waste it.. Especially when if we get our letters to him this next week, Send them ON April 29th, OK ?


That should give his Staff time to read all of them and get him something just in time before the 2 days of the CFSAC start on May 10+11th, and there will be a delegation of people (from the "early onset" ~ "Stand UP for ME" group with children meeting with Congressional members to "put some faces on this" on May 11th and Our International Awareness Day is May 12th.


Recent News and background~


Courtney Miller asked President Obama
"Q    Mr. President, my name is Courtney Miller .  And I want to thank you for returning science to the national priority.  And I need to ask for some help for my family.  My husband has chronic fatigue syndrome, which is an illness very much like multiple sclerosis.  And we spend billions of dollars in this country on roughly a million patients for disability and Medicare and lost tax revenue and lost productivity, and we spend less than $6 million for NIH research on this illness.  And I’m asking you for my husband and my kids, who want their father to be able to go to their baseball games, if there’s a way to make improvements on that."
......
Answer snippets:
“I am a Christian and a person of faith and I believe that God gave us brains to figure things out,” Obama said when asked by a woman in the audience what his health policies could do to assist her husband who is suffering from Chronic Fatigue Syndrome. (1)


"Now, I will confess to you that, although I’ve heard of chronic fatigue syndrome, I don’t have expertise in it.  But based on the story that you told me, what I promise I will do when I get back is I will have the National Institute of Health explain to me what they’re currently doing and start seeing if they can do more on this particular ailment.  Okay? " (Applause.) (2)


Here is the video of that event:

Listen for his comment at about 11:45min. about medical research.
Courtney Miller is at around 47 minutes time,
asking Pres. Obama for funding for Chronic Fatigue Syndrome...




Why we are asking YOU ALL Now from ALL around the WORLD to Help us let him KNOW that this indeed IS a Worldwide PANDEMIC.. He needs to receive letters from all over the world, OK ? So USA, UK, Iceland, Belgium, Norway, Sweden, Canada, Australia, New Zeland, Spain, everywhere you know there is ME/CFS please watch and understand WHY we want to FLOOD the White House with Mail so we can STAY "ON his Radar" and maybe we can Help him Understand that BY Helping US, it will SAVE the country and world's economies money because once well again and on meds like Magic Johnson, a basketball player he will know of , we can then get some jobs back, get our lives back, and will be HONESTLY "Happy to Pay Taxes" and not be broke or on disability any more...


This is also WHY we want to DO this~
How Mail is Handled at the White House.



***********************************************
Talking Points for your Letters:


*** This Category of Neuro-Immune disease includes ME/CFS, Autism, Chronic Lyme Disease, Gulf War Illness, mitochondrial disease, and has also been linked to Atypical MS, and numerous cancers including an Aggressive Prostate Cancer, Lymphoma, 25% of Breast Cancer and can include many serious conditions such as MCS Multiple Chemical Sensitivity, OI/POTS Orthostatic Intolerance/ Postural Orthostatic Tachycardic Syndrome, which drops your Blood Pressure in half when you stand up and makes your heart work 4 times harder to help circulation so it can pump nutrients and oxygen to your body and BRAIN, otherwise you will pass out in 5 min if standing STILL . They also usually become VERY sensitive to many meds which makes even treatments harder. It's a complete long term progressive disease that devastates families, while it bankrupts them and the insurance companies DO NOT pay for any tests that are required and thus they pay for NO Treatments... What's wrong with THIS picture ?


*** The CDC must be made to IMMEDIATELY change their website so that will include testing for the co-factor infections many of us have, like EBV, HHV6, etc. Eliminate the Treatments of GET + CBT, because it has been PROVEN that for many of us with OI/POTS "any GET" is yes Literally Harmful to us..and the ONLY CBT that we need is what Dr Lucinda Bateman of Utah uses which is to "teach us the limitations of what we can and should NOT do living within the confines of our illness so we do NOT do anything to cause us to be worse or cause will cause us to Flare or Crash."


Please check with Dr Chris Snell, Current Chair of the CFSAC with regards to the P.E.M. (Post Exertion Malaise) and his Stacey Protocol for testing us for this that has been legally accepted in courts to PROVE that this exercise hurts us and causes us cardiac harm, and also check with Dr. Leonard Jason, CFSAC member who along with Snell testified at the NIH State of Knowledge ME/CFS Workshop April 2011 and also validated that we do NOT have ME/CFS because we are Depressed. Quite the Opposite actually. Thus the CDC MUST be made to Change their TOO Inclusive numerous changes made to the Original Definition to what CFS meant when First "coined" when the symptoms listed matched MUCH MORE the Canadian Case Criteria Definition which if you check with the Dr's that have been treating the serious patients for 20+ YEARS..  THAT is what we Truly HAVE... is ME.


And Yes, Dr Cheney found spots on the brain scans he did on his patients in the 1980s that matched the spots on the brains of HIV patients.. which again tends to lean towards evidence of a retroviral connection.. The CDC's insistence that a disease will recognize a countries boarders is about as 18th Century medicine as I have seen ~ WAKE THEM UP ~ Please... They are currently an insult to this Country.
They are sent Positive samples of Positive Viruses and "Can't Detect CR*^", as far as we feel. It's Truly embarrassing...

*** Please let him know that there are also 7 cohorts in 7 countries, tested by different labs, that have also tested Positive for the 3rd Human Retrovirus, and there has been NO definite other reliable research done to PROVE that this is NOT an actual human pathogen or why thousands of people ARE sick with this retrovirus and other co-infections of which ME/CFS is one, and that these people "NEED Clinical Trials NOW," NOT in 3 yrs or when ever the Lipkin & other studies are done... These people Testing XMRV+ "HAVE are retrovirus AND co-infections" and that alone SHOULD automatically make them eligible for Some sort of Help~ immediately !!

***One year has already passed since even the Emory University published a paper that listed numerous ARVs that could be already considered for usage for those with XMRV/HGRV. That was a YEAR ago ~ Where's the Clinical Trial... We have been sick FAR too long already with NO medicine from anyone!!

*** "Anyone Positive for XMRV and just one co-infection" should be immediately eligible for 'Care and 'Caid/'Cal and compassionate care should be granted to them IMMEDIATELY !!. TOO many of them have been sick and denied any medical care or coverage for 20+ years due to lack of research, postponement of research, diverted research funding, esp. since a retrovirus had been linked back in 1990 and because the CDC chose to not pay for 2 plane tickets they shot down the research and let it die.. NOT Again. !! All care, all meds, all long term care and hospice, the same as the HIV/AIDS patients get. Deja VU all over again 20 years later ~ NOW on the 3rd Generation.. Shameful and WorldWIDE.

***$150 Million NOW, for research that includes the Whittemore Peterson Institute, of course, with "non-blinded" clinical trials of any patients that "test positive for XMRV and one-co-infection" ...paid for the same way HIV patients get their meds (whatever that is)...'Caid? 'Care?


**** "A Separate NIH SEP for XMRV and all it's
co-infections" is a necessity given the 30 year neglect that the CDC has given these millions of Americans, the fact that there are estimated to be 10 million asymptomatic XMRV carriers in the USA alone either donating it into the Public Blood Supply or passing it on via bodily fluids, that is IF it is ONLY Infectious and not Contagious which has NOT been confirmed YET. Get ME/CFS and XMRV "OUT" of the CDC... they can't detect anything.


*** For goodness sake's Educate the Doctor's that are ON the Front Lines as right now they KNOW NOTHING and all they do is want to give us anti-depressants when we are NOT Depressed, except for the ACT that they do NOT Believe us cuz NO ONE has Educated them... This was a HUGE Point made at the NIH State of Knowledge Workshop April 7+8th.


***Educate the Dr's that XMRV/HGRV's ARE indeed Retroviruses and they should have continuing CME Units Immediately REQUIRED so that they "do NOT tell" their patients that a "Positive XMRV Serology" means they do NOT have this retrovirus IN the DNA "For LIFE". Dr's should NOT give test reports unless they KNOW the Seriousness of what the heck they are telling their patients.. The peer-reviewed "Science" published paper that announced the CFS link with XMRV was in Oct. 2009, yet in Dec. 2010 my Dr STILL did NOT know ? Must they wait for a Personal Telegram ? In the USA I finds this appalling. Do they not have required Yearly CME's that required ?

*** This also is Important as it effects not only the adults but "the SICK CHILDREN effected" and being taken awake from their parents (which is SINFUL) but the (DSS) (at the age of almost 17 years old ) and placed in their custody in January of 2009.... because they they then blame the parents for Munchausen By Proxy when they have NOTHING Else to resort to and THIS is but ONE recent example even those they have even had Help from Dr. David Bell, Dr. Paul Cheney (25+yr EXPERTS in this disease) and after 25 years THIS OF> Proof that This is STILL going on and it MUST STOP !! My goodness, Dr. Bell went thru this back in the late 1980's and it took him 10 years of legal court battles to get back one child home to their parents and the money wasted was not spent to help the child's health in the meantime. Sinful. Because of Lack of Knowledge and education about this illness.
http://www.bringingryanhome.com/


Pres. Obama would YOU want Shasha and Malia taken away from YOU if they were sick just because the Dr's could not help them YET or had not been educated YET ? This IS INSANITY !!


***Given the Family Trees that are showing up now cuz we Literally ARE on our 3rd Generation of this set of neglected illness by the CDC that continues to tell us "It's ALL in our Head"~ Please have a look at what the first evidence of Family Tree medical history is showing re: descendant generations......













In each of the 6 clusters, the top 2 are the parents with the children underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM. Under each shape is their XMRV result. V= virus found in culture, 
Av = antibody test, NT=not tested


Family 1, upper left corner – One parent XMRV + for virus by culture and XMRV + for antibody, one parent XMRV + for the antibody. Neither parent symptomatic. Child with Autism, XMRV + for the virus.


Family 2, top row, middle – One parent with CFS and XMRV+ for antibody. Two children with Autism; one XMRV+ for virus by culture, one XMRV+ by antibody.


Family 3, upper right corner – One parent with CFS and XMRV+ for virus by culture. Child with Autism, XMRV+ for virus by culture.


Family 4, bottom left corner – One parent with CFS and XMRV + for virus by culture. Two children with Autism, both XMRV+ for virus by culture.


Family 5, bottom row, middle – One parent with CFS, Fibromyalgia and XMRV+ by antivody. Child with Autism, XMRV+ for virus by culture and by antibody.


Family 6, bottom right corner – One parent with CFS and XMRV+ by antibody. Child with Autism, not tested for XMRV.


A quick summary regarding families. Confirmed here, there is XMRV in children under the age of 5. To date they have confirmed XMRV in 16 of 17 families with Neuro-Immune disease amongst multiple members. Finally, that more work needs to be done to confirm pathogenesis and transmission.


*** "I'm worth more than $3.64 a year"
That was the TOTAL that has been spent on Research for the patients with ME/CFS over the past decade and until the patients got Vocal enough because it was costing our lives and families and countries TOO MUCH, we just FINALLY had the First Ever NIH State of ME/CFS Knowledge Workshop that show many of the FLAWS and Gaps and blind spots and ways that time and money has been wasted. It's TIME
to Get Serious President Obama.


STOP the Generations of Ignorance, Lack of Serious research, and to Help ALL of these people, Help get treatment for those with the retrovirus and Get the FDA to Pass Ampligen as it is our ONLY thing that has helped so far.. until someone does further Quality Research.. 
TOO Much time has passed.. 
This IS effecting the children...
What would The First Lady suggest be done I wonder ?


CFS History~
How an old disease got a New Name





Presidential Contact Info: 
Please use as many as you Can, OK? 
Put them IN the mail NO matter where you ARE
on either April 29th or May 1st, OK?


Mailing address:
President Barack Obama
c/o The White House
1600 Pennsylvania Avenue, NW
Washington, DC 20500


President's email: 
"Pres. Barack Obama" president@whitehouse.gov

White House Phone Number: 

202-456-1111 (EDT)

FAX: 202-456-2461 (24hours)


************************************************
reference articles:
(1) http://whitehouse.blogs.cnn.com/2011/04/21/obama-invokes-his-faith-and-a-g-in-nevada-town-hall/

(2) http://www.rgj.com/article/20110421/NEWS/110421028/Update-Obama-ends-talk-Reno?odyssey=nav%7Chead

http://www.enewspf.com/latest-news/latest-national/23735-remarks-by-president-obama-in-a-town-hall-in-reno-nevada.html

http://content.usatoday.com/communities/theoval/post/2011/04/obama-will-root-out-manipulation-of-gas-prices/1


http://blogs.suntimes.com/sweet/2011/04/_washington--i_drove_by_a.html

Thursday, April 21, 2011

#112~ "If this was HIV, it would be 1983"


For those that do only have dial-up and can not watch videos I wanted to post the text of one statement that needs to be heard Around the World. I would like to also thank the person that did this transcribing and gave me permission to repost  it for everyone to read.. cuz this needs to be known.. 


I am one of the SeroPositive XMRV plus co-infection people that has been sick since 1987 and maybe before because I have NOT had any vaccinations since the 1970s and you can't grow antibodies to something you have never been exposed to.. so any lab contaminations that may have taken place after 1992 had nothing to do with my blood or what antibodies I have created. 


The fact that there are also now literally 3 generations of sick people and some have them within one family, and some even have adoptions so that would rule out bodily fluids.. so the Real Question here also is.. is this merely Infectious or also Contagious ???


And Now~ Here's Judy ♥ 
from the NIH State of Knowledge April 8th, 2011
*************



Mikovits: I would like to say that what I've seen here this week says that, clearly, XMRV at best, what we originally set out to do 5 years ago was a systems biology approach. We used those genomic technologies by Gene and Mary Carrington. We used a microarray from the NCI to screen all the pathogens. And what we saw was what we heard from Mary Schweitzer, that a lot of active pathogens and things like shingles, things like enteroviruses, things like EBV, CMV, HHV6--they're all totally on in that microarray. In NCI's infinite wisdom, it didn't put XMRV on it, so that's how we ended up going back. But we didn't look with a hypothesis for retroviruses.

We took the systems biology approach, collected samples from patients who had the well-defined characteristics that Tony Komaroff talked about and that were in the Lo Study and Dan Peterson had done--these patients--had data on them for decades. We took samples over three years. So it wasn't that we found the virus in every sample. It was like the macaque study, where it quickly went into the tissues, like the mouse study that came out this week that said the antibody responses were weak and transient. We don't know everything about this virus.


But HIV does not cause AIDS. The CDC definition is HIV and one of 25 co-pathogens. So the Lyme, the EBV, the enteroviruses, Martin Lerner's patients who don't get better with Valcyte. This is a reasonable hypothesis because we see the same thing. We've developed a cytokine signature that is distinct from Nancy's cytokine signature and from Ben Natelson's. So this is a marker to follow on clinical trial improvement, but there's no doubt these people are infected. With HTLV-1, if you're seropositive and you're sick, you can get some kind of treatment.


I'm not saying antiretrovirals. I'm saying immune modulators. So the patients that are found to be infected now--and there are thousands of them--need something now, not three years from now when Lipkin decides there is an association. Whatever their disease is, they're sick. And I know John--Chia--has patients who are co-infected and they don't treat the same way, so we can get together with the physicians who have co-infected patients. Even Lyme doctors, whom we are working with across the country. We can start doing something now. Take it out of CFS. It's not about CFS. It's about a retrovirus we don't understand very well. As Frank Ruscetti said at a meeting a month or so ago, "If this were HIV, it would be 1983." That's all. 

*****************************************************
Thank You Patricia Carter of the  http://www.mecfsforums.com/ for permission to repost this transcription for the World to read. ♥
*****************************************************

If THIS is not a Call to Help the Thousands of us that ARE sick and Need Help NOW I don't know what is... Thank You, Dr. Judy, for "Caring About us" and for taking on this extremely HARD job during these challenging times while 
"The Band Plays On"............................................

Next on Deck is the CFSAC meetings on May 10th + 11th and then the International Awareness Day on May 12th.

May everyone Please "Help Raise Awareness"  ~This YEAR, HERE and NOW ♥

If XMRV proves to be Contagious... you might be Next.


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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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