#103~ XMRV-Bloggerama Report

Howdy all ~


Sorry for my delayed response.. I have been in the middle of a BAD FLARE for the last 2 weeks, all viruses flaring and unable to hardly do anything except sleep and barely get my food to eat in between 15-18 hour blurs... losing track of what day it is let alone what time of day.

The other day since it has been dark during the daytime recently, I also most gave Thanks thinking I was waking up during the day and was about to call a friend so I could actually HEAR a Human Voice~ TV and radio do NOT count...as there is no REAL PERSONAL INTERACTION THERE~
Only to find out that it was NOT 10 after 8 in the evening.. but *Sigh* it was actually  20 minutes before 2am~ Oh well.. there went another day...

My internet connection is SO slow that I can barely do anything while I am awake.. and doing this blog will use up my ENTIRE TIME of being awake tonight..
Never the less, I give Thanks that I HAVE an internet connection as slow as it is..
(while I write the Egyptians have had their internet connect CUT-OFF)
Life and our attachments to physical things is SO Ephemeral..
Please Be Appreciative for what you DO Have and acknowledge the difference between what we NEED and what we like,
and what is Necessary for Life and what is an added blessing..


Honestly, it is rather bizarre living in the Center of a HUGE City, yet  feeling and existing,
like I am  living the life of a hermit in the mountains.. as only getting new food ONCE
every 3 months makes it feel like that.. and makes getting anything FRESH a Real Treat and Rare.. Life goes on outside of my existence...
I hear about it on the news and from the occasional friend that does call..


When conscious, I do try to be an advocate for those with my illnesses, but all the while.. knowing I do NOT have the family, or money or medical coverage or back up system, let alone energy to allow me to  take advantage of any of the new clinical trials that may be coming out soon...that might be able to stop this illness in its tracts..


ALERT: Our society and health delivery system "Does NOT Deliver"....
They would rather HIDE the fact of our existence, drop us OFF the unemployment rolls so we are NOT counted. The Health CARE System does NOT Care about YOUR Health. NOTHING has changed since Pres. Obama's mother was dying and fighting the insurance companies on the phone on her death-bed. Today we have not only been ignored, but the HEAD Governmental Agency of numerous countries is denying that our illness EXISTS.


Science is about ready to catch up with the Truth, but the "Flat-Earthers" are STILL in DENIAL of the existence of the 3rd Human Retrovirus and the part it plays undermining our immune systems allowing us to be assaulted by many other Diseases and cancers attacking not only us, but also our descendants..
"It IS Showing UP" Not only in our Medical Records but also in our DNA.

I am NOT a retrovirologist, but I did work in a hospital for 17 years and have studied enough medical modalities and been a student of Life, Long Enough to know that this bugger is REAL and MILLIONS *ARE* being infected and GENERATIONS ARE/WILL BE INFECTED and EFFECTED. 

The Greedy are INDEED killing us and 

until one of THEM is infected NOTHING will be taken Seriously~ Period. 

UNTIL somone IN Power *gets it* and I do 

NOT mean Simply understanding it... will Anything Be DONE.

The media has been told "Hands-OFF," and 

you Wonder WHY the sick MUST Blog ???

I am about to make my Last Will and Testament and will be donating the sum of what little I have left to the Whittemore Peterson Institute so they can continue their SERIOUS Research into the Cause and Treatment of this Disease and the Millions it is Effecting ALL over the World. Bless the Whittemores, Dr. Peterson, and Dr Judy Mikovits and ALL who Help them. Please do NOT forget Dr Cheney and others who have who have also donated their LIVES to Helping us and continuing their Research. Bless those who donate to continue the research by those who are doing this MOST IMPORTANT work. Bless the ONLY REAL Investigative Reporter, from the Wall Street Journal Health Blog,  to date, that has the Integrity to cover the TRUTH of this PANDEMIC, Amy Dockser-Marcus, for she knows what it is like to be the victim of a ignored disease.


It has taken my computer over an hour already just to write this amount down...
I am tired and weak and must eat something NOW before I sleep my next 15 hours....

Thank You ~CDC and NHS~ for the MANY DEATHS that YES~ WILL BE as a Direct Result of YOUR Negligence over the last 25 years.. Yes, many others have been complicit with you, BUT had YOU had ANY INTEGRITY at all... you Literally Could HAVE changed the course of History, but you chose NOT TO DO SO...

At this point, I personally blame Dr. Reeves, Dr. Strauss, and Dr. Fauci in the USA, and Dr. Wessely and ALL of his collaborators in the UK for undermining any REAL Research that was being done.. The Lightening Process is just another form of CBT that does NOT cure ANY Retrovirus ~ PERIOD.





For those still living~ PLEASE STOP arguing about the fricken NAME and SUPPORT the REAL Work of RESEARCH about the Disease and finding a CURE or a Way to HALT it's Progress...

The DEAD do NOT care by what name you call their illness... Those holding up the Real Research do NOT care HOW Many things we Test Positive for.. NOR how many are sick or how many lives/families are being DESTROYED, ~ NOR how much $ this is costing ANY of OUR ECONOMIES Worldwide... 

For just ONE of my illnesses, ME/CFS, the economic cost to the USA is $20 Billion a year, yet there is less than $10 million a year spent in Research for this illness...


I will leave you now with just a few of the blogs written for this year's~

XMRV Bloggerama. If you know of any that I missed, please add them in the comments section, OK, and I will add them to my list and to the bloggers list. Thank You.


I DO have links for most of these bloggers in the column on the Right-side of this blog.  Please NOTE, that these bloggers are from AROUND the world and come from ALL walks (beds) of Life...

Participating Blogs:

Many of these are novice bloggers, some are veterans and others are written by partners of sufferers. Everyone of these writers needs to be congratulated for using up what precious energy they have to help raise awareness for you and me. (per XMRV Bloggerama Organizer)


~The Relationship of XMRV to CFS and M.E.
http://slightlyalive.blogspot.com/2011/01/relationship-of-xmrv-to-cfs-and-me.html

~They Will Hear Our Whisper

http://x-tremedenial.blogspot.com/2011/01/will-they-hear-our-whisper.html

~XMRV-It's All Just Coincidence

http://xmrv-bloggerama-day.blogspot.com/2011/01/its-all-just-coincidence.html

~Treating XMRV

http://treatingxmrv.blogspot.com/2011/01/back-to-work.html

~The XMRV Hunt and Me
http://itsonlymeitsnotmymind.blogspot.com/2011/01/xmrv-hunt-and-me.html

~XMRV: Frequently asked questions
http://cinderbridge.blogspot.com/2011/01/xmrv-frequently-asked-questions.html

~Wazzup XMRV!
http://www.pugilator.com/awareness/wazzup-xmrv/

~XMRV: Why Biased Reporting Belongs on the Slush Pile
http://dancingwiththesandman.blogspot.com/2011/01/xmrv-why-biased-reporting-belongs-on.html#more

~Questions +Answers: Alphabet Soup
http://nopostergirl.com/2011/01/22/questions-answers-alphabet-soup/







~ME/CFS XMRV Bloggerama day
http://www.johnallsopp.co.uk/blogViewer.php?blog=1988

~WE HAVEN'T HEARD THE LAST OF XMRV-ME/CFS-LYME DISEASE
http://lookingatlyme.blogspot.com/2011/01/we-havent-heard-last-of-xmrv-mecfs-lyme.html

~XMRV, brought light/hope to CFS/ME Patients!
http://1lito.blogspot.com/2011/01/xmrv-brought-lighthope-to-cfsme.html


~The Story of My CFIDS
http://wecanstillblog.blogspot.com/2011/01/story-of-my-cfids.html

~Conscientization
http://glamsticks.wordpress.com/2011/01/20/conscientization/


~ME/CFS XMRV Bloggerama day
http://www.johnallsopp.co.uk/blogViewer.php?blog=1988

~The Relationship of XMRV to CFS and M.E.
http://slightlyalive.blogspot.com/2011/01/relationship-of-xmrv-to-cfs-and-me.html

~WE HAVEN'T HEARD THE LAST OF XMRV-ME/CFS-LYME DISEASE
http://lookingatlyme.blogspot.com/2011/01/we-havent-heard-last-of-xmrv-mecfs-lyme.html

~XMRV, brought light/hope to CFS/ME Patients!
http://1lito.blogspot.com/2011/01/xmrv-brought-lighthope-to-cfsme.html

~XMRV and Hope
http://frommetoxmrv.blogspot.com/2011/01/xmrv-and-hope.html


~XMRV - Do You Have It?
http://2hope4acure.blogspot.com/2011/01/xmrv-do-you-have-it.html

~XMRV linked to ME/CFS
http://givenmeathorn.blogspot.com/2011/01/xmrv-linked-to-mecfs.html

~XMRV Bloggerama Day
http://xmrvandme.wordpress.com/2011/01/18/xmrvbloggerama/

~XMRV in ME/CFS: New Facts and Findings
http://livewithcfs.blogspot.com/2011/01/xmrv-in-mecfs-new-facts-and-findings.html

~XMRV and M.E./C.F.S.: summary and links
http://nighearain.wordpress.com/2011/01/20/xmrv-and-m-e/

~XMRV and Hope
http://frommetoxmrv.blogspot.com/2011/01/xmrv-and-hope.html

~XMRV - Do You Have It?
http://2hope4acure.blogspot.com/2011/01/xmrv-do-you-have-it.html


~XMRV linked to ME/CFS
http://givenmeathorn.blogspot.com/2011/01/xmrv-linked-to-mecfs.html

~XMRV Bloggerama Day
http://xmrvandme.wordpress.com/2011/01/18/xmrvbloggerama/

~Learning to Live With CFS: XMRV in ME/CFS: New Facts and Findings
http://livewithcfs.blogspot.com/2011/01/xmrv-in-mecfs-new-facts-and-findings.html

~Whittemore Peterson Institute Leads ME/CFS Research
http://mecfsfromme.blogspot.com/

~XMRV – British Science Never Looked So Poor....
http://www.cfstheresistance.com/british-science-never-looked-so-poor.php

~XMRV in ME/CFS: New Facts and Findings
http://livewithcfs.blogspot.com/2011/01/xmrv-in-mecfs-new-facts-and-findings.html

~XMRV and M.E./C.F.S.: summary and links
http://nighearain.wordpress.com/2011/01/20/xmrv-and-m-e/  

~ME/CFS has MS and AIDS-like Clinical

http://lookingatlyme.blogspot.com/2011/01/mecfs-has-ms-and-aids-like-clinical.html

~Living With Chronic Fatigue Syndrome:

http://livingwithchronicfatiguesyndrome.wordpress.com/2011/01/29/reflective-travails/

~CFS: Patient Advocate

http://cfspatientadvocate.blogspot.com/2011/01/invest-in-me.html

~CFS Central:
http://www.cfscentral.com/2011/01/go-ahead-make-my-day.html

~CFS'nGay:

http://cfsngay.blogspot.com/2011/01/art-4-xmrv.html

~CFS Chronicles:

http://cfschronicles.blogspot.com/


some related articles of Interest:

~Even Before XMRV (10/2009) *the WHY* of the  CDC obfuscation was Obvious: 

http://www.oslersweb.com/work4.htm

~Nice Guidelines Blog:

http://niceguidelines.blogspot.com/2011/01/must-read-if-you-are-xmrv-positive.html

~Crystal structure of XMRV protease differs from the structures of other retropepsins:

http://www.nature.com/nsmb/journal/vaop/ncurrent/full/nsmb.1964.html#additional-information

*********************************************
 Please BLAME *ANY ERRORS* in the blog on ALL of my Viruses and Retroviruses that are Currently Flaring... They Thank you...
******************************

If you missed your chance to blog for XMRV Have NO Fear~ You CAN still participate :-)
ON the participating blogs above - "if you would visit each one in turn and leave a comment, this will help raise the blog's profile on *Google,* which in turn will increase its public visibility."

"There is also another way you can help. By entering Google http://www.google.com/ and typing XMRV in the search window you will be presented with the top ranking XMRV articles. Find the ones that have published positive and accurate information and leave a comment. In future, you might want to consider not leaving a comment when you read a negative 'blog' article. Visiting and commenting on some of the obvious attention-seeking blogs (ie. those that bate sufferers with a view to increasing hits), only raises their profile, which we want to avoid. Commenting on online news media sites is a good thing, especially if the information they provide is inaccurate. It's is a good opportunity to put the record straight and your comment is likely to be read by a larger audience."
~per: http://dancingwiththesandman.blogspot.com/2011/01/xmrv-bloggerama-how-can-you-help.html

It has been 7 hours so far just creating this much~ non-stop, 
except for computer interruptions.. NOT on my part.
I have NOT eaten YET and am exhausted now..
How are we to survive ???

PLEASE Show your Support for ALL of the Many Hours that these bloggers have put into their blogs and Follow them as a way of showing Thanx ~ KNOWING that at least someone is reading your blog makes it feel worth all of the energy  and effort it took to write it.

A reminder of decades past~ that are still with us sadly...
 

"If they looked at AIDS the way they looked at us, they would have said, well, pneumocystic pneumonia doesn't matter, because everybody doesn't have it, and it doesn't cause AIDS. And Kaposi's Sarcoma doesn't matter, because everybody doesn't have it, and it doesn't cause AIDS. That's the way they treat all of the biomarkers and diseases we have."--Mary Schweitzer.

Mary Schweitzer has been elected by the USA patients as one of 2 of their *patient-reps* on the NIH Steering Committee for the upcoming State of Knowledge Conference for ME/CFS in April, 2011.

 In 1980's thru the 1990's HIV has been argued as a "smoking gun."
So we are facing what HIV/HTLV-III patients went threw in 1980-mid 1990's
It is well documented in "And the Band Played on"~ and guess what.... 

THE BAND IS STILL PLAYING ... and sadly it is playing a dirge to the deaf.

 Please NOTE that sadly our illness surpassed the numbers in this movie LONG AGO~


We are about to have *Another Workshop/Conference*

Do you REALLY think that any Progress will be made ?

Banning ME/CFS patients from Donating blood will NOT stop XMRV from being IN the Public Blood Supply.. NOT when there is ALREADY in the USA alone... an estimated 10-20 million asymptomatic XMRV carriers are CURRENTLY spreading it and donating blood.

And that is ONLY from ONE of the illnesses that seem to be linked to this retrovirus. There are many other illnesses also linked and so far all of those with Lyme disease tested have shown Positive results for XMRV+

Currently there has been shown a link to not only ME/CFS, but also and aggressive form of Prostate Cancer,  Autism, Lymphoma, Lyme Disease, Atypical MS, GWI, and even Breast Cancer.

~Support the WPI Research NOW.

~Demand that your Government also support Valid XMRV research and treatment NOW.

-Want to Support Your Troops ?
~DEMAND that your Gov't CLEAN/screen the public blood supply NOW.
-WHO do you think has been getting a LOT of the transfusions lately ?

Our blogs will remain LONG after WE are GONE~

Are we crying in the dark ?

Is anyone listening  ??

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#102~ *NOW is the Time* to HELP the UK ♥

UK~ Dept of Health Protest White Paper Consultation

Join us in this UK protest to the "NHS choices White Paper Consultation"
which closes Jan 14th, 2011.


On the heels of the UK + London Blood Ban, they know ask us to help them by quickly sending some emails. Please do so ♥

Many of our ME/CFS friends in the UK could REALLY use our Help Right NOW.

If you in the UK, you may write in as a patient. 

If not, you may write in as a 

Patient Representative/Advocate. 

After you read this the white paper linked 
within this post and written by our friends in the UK that need our Help desperately I have NO doubt that you will be Easily Able and Willing to quickly use their "Sample Letter" to create your own and send it off to the UK to HELP or Fellow Friends that NEED our Help at this IMPORTANT TIME. We ask them for help when we have campaigns, so IMHO, this is one easy way we can help rePay them and help them at the same time. Thank You in Advance for caring about  the rest of your ME/CFS Family in the UK. 

Your HELP is MUCH Appreciated !!!

♥ Thanks much for helping them so we can actually BE UNITED in our  Health CHOICES Around this World regarding HOW those of us that have been abused and mistreated and ignored for DECADES, NOW work HARD to Speak OUR Voices. ♥


Please REPOST Far and Wide!

 HOW to take part and HELP.

- Full instructions are in the links BELOW including "a sample cover letter"

NOW IS THE TIME - to say IN THE UK 
what choices you want for treatment of ME. (please HELP Them)

The NHS are asking us what choices we want in our health care choices
   (Just as in the USA we are participating with the NIH State of Knowledge)

on StoneBird http://www.stonebird.co.uk/

Dr Speedy's Nice Guidelines Blogspot
http://niceguidelines.blogspot.com/2011/01/myalgic-encephalomyelitis-white-paper.html

****************************************
This reply to the White Paper has been written by patients for patients 
and is suitable for all levels of severity.

The discrimination and inequality in the current system is unacceptable 
and a breach of our rights. We call for an end to this
discrimination, and our right to be involved in the 
planning of our health care services to be honored 
and the patient`s voice BE HEARD loud and clear.

We hope we have stated the views, concerns and 
bio-medical needs and choices we want, 
not only in diagnosis, 
but also in treatment and social care.

We as patients feel that the Lightening Process (LP) , 
Cognitive Behaviour Therapy (CBT) 
and Graded Exercise Therapy (GET) 
ARE no LEGIMATE choice at all. 
We want equal access to appropriate specialists such 
as neurologists cardiologists, immunologists and a 
fair diagnosis using the Canadian Guidelines, with correct testing and treatment.

This is the choice WE WANT, 
not harmful CBT and GET which our shown by patient surveys 
to worsen our conditions. 
We condemn the Wessely school and their vested interests, 
and dominance in the NICE guidelines as an
unfair representation 
of the facts which leads to discrimination which is why they 
have been declared unfit for purpose.

The needs of the severely ill are neglected, with no home service 
often the most in need get the least service. because their
disability does not allow them to access services.

We call for "equal access for the 25% of patients 
who are severely ill bed and house bound who have no access 
to choice for ME treatment or any other health care needs." 

Correct services need to be provide via
home visits 
from all specialists involved in care. 
Otherwise, the severely effected will continue to suffer discrimination 
in accessing appropriate bio-medical treatments.
**************************************
Let your voice be heard loud and clear, the more who reply the stronger the message is for ALL of US all over the World !!!!

Now published ready for downloading and sending with full instructions in pdf

on StoneBird http://www.stonebird.co.uk/

and also on Dr Speedy's Nice Guidelines Blogspot

http://niceguidelines.blogspot.com/2011/01/myalgic-encephalomyelitis-white-paper.html

*********************
By snail mail to :
Choice Team, 11th floor, New King’s Beam House, 

22 Upper Ground, 

London SE1 9BW.

Below is a sample for your email or letter...
Let them know if you have made additions, 
use BOLD so they can find them easily.

************************************
Dear Sir/Madam

I submit the following document for inclusion in the white paper consultation,
I have submitted research links in the document which support this
submission and ask you not to reach any decision regarding provision of choice for ME patients without fully exploring this evidence.

Yours sincerely,
Your Name
**********************************************
Please Repost Far and Wide

Thank You~
"ME Choices Team" from the UK.


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#101~ Letter from Annette Whittemore, WPI

Turning Today’s Discoveries Into Tomorrow’s Cures

January 1, 2011

XMRV: A Human Retrovirus with Unknown Pathogenic Potential, Not a Lab Contaminant 


The recent proclamation that “XMRV is not the cause of CFS,” came from an individual who did laboratory experiments to show how PCR experiments can become contaminated. These results have nothing to do with the reality of a disease or the methods used by those who have detected XMRV in the blood and tissue of patients found to be infected. The positive studies, which cannot be explained away by PCR experiments, are those which have used multiple methods to show that XMRV is a live replicating gamma retrovirus in human blood and tissue samples using the gold standard methods of viral isolation and antibody testing, in addition to PCR.

Unsupported conclusions, such as the one offered by the Wellcome Trust spokesman, often create sensational headlines but do little to move science forward. Authors of the positive XMRV studies have been extremely careful not to claim causality, realizing that more scientific research is required to make such a statement. However, one fact still remains clear. Not one of the negative studies changes the results of the scientific research done by Lombardi et al., Lo et al., Urisman et al., and Schlaberg et al.

The WPI-led scientific study, which rigorously ruled out contamination, revealed high associations of gamma retroviruses with physician-diagnosed CFS patients, using four different methods of detection. Recent commentary associated with the negative research papers on XMRV, which used only one testing method, claimed that these studies proved that XMRV was not the cause of human disease. On the contrary, what the authors of the “contamination studies” confirmed is something that most experienced scientists already know; there are risks associated with using PCR if one does not properly control for contamination. They cannot conclude that other research groups had the same problems or that “XMRV is not the cause of CFS”.

Most significantly, the recent Retrovirology publications failed to address the most
important pieces of scientific evidence of human infection in the previous XMRV studies, including the fact that XMRV positive patients produce human antibodies to gamma retroviruses, XMRV integrates into human tissues, and infectious virus has been cultured from the blood of hundreds of patients with a diagnosis of Chronic Fatigue Syndrome and M.E. Humans do not make antibody responses to mouse DNA sequences from contaminated lab experiments. The Retrovirology studies only point out that XMRV research cannot be done in a mouse laboratory without extreme caution and should not rely solely on PCR methods.

Many researchers realize that the question of gamma retroviruses and human disease cannot and should not be dismissed lightly. Retroviruses integrate into their host’s DNA causing life long infection. Human retroviruses, such as HIV and HTLV-1, are causative for immune deficiencies, neurological disease and cancer. Other studies using mouse models of Murine Leukemia Virus infection, a close relative of XMRV, have shown significant tissue involvement soon after infection, resulting in many physical symptoms of disease including cognitive deficits and immune deficiencies, symptoms which are well documented in patients with XMRV associated diseases. Animal studies involving XMRV demonstrate that the virus moves quickly away from the blood to various organs within the body, such as the spleen, lymph nodes, GI tract, and reproductive organs. This helps to explain why the virus is difficult to detect in blood even as it replicates in the tissues of those infected.

Many anxious patients have asked, “Where do we go from here?” and “Is this the end of XMRV research?” The answer to the second question is an unequivocal “no.” As to the first question, a quick check of the status of ongoing research in various labs confirms that the research groups who have been working on XMRV over the past year are still hard at work developing better assays to check the world’s blood supply for the new retrovirus, finding correlates of immune dysfunction, engaging in animal studies, extending their findings to other groups of patients, and in general, enthusiastically continuing their research. They understand that novel scientific discoveries, which threaten current dogma, will continue to be challenged until the evidence can no longer be denied. For instance, there are still those few who question the fact that HIV is the cause of AIDS. It took Nobel Prize winner, Dr. Barry Marshall, 17 years and three trials in which he infected and then cured himself of H-Pylori associated ulcers, before the medical world would accept the fact that the bacterium causes the disease. Today we are engaged in a new battle to prove that human gamma retroviral infections, such as XMRV, are underlying pathogens in neuro-immune diseases and untold cancers.

It is clear that more research must be done to clarify the role of gamma retroviruses in human disease. However, when a pathogen such as XMRV is found in over 80% of those tested with the same diagnosis, causality is clearly a reasonable hypothesis that begs further scientific and medical research. It is a known fact that important questions of causality can often be answered through well designed clinical trials. For those who have suffered for years from these debilitating diseases, novel drug trials cannot begin soon enough.

WPI’s collaborative research projects are revealing the infectious and inflammatory nature of neuro-immune diseases, providing strong evidence against the use of CBT and exercise therapy as rational “treatments” for those who are ill. Such knowledge underscores the urgent need for much more private and federal funding of biological research to provide diagnostic tests and effective drug therapies for the millions who are ill, stop the spread of infectious retrovirus(es), and end the devastating cycle of disease.

Annette Whittemore
President
Whittemore Peterson Institute

http://wpinstitute.org/



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#100~ Please SPREAD this video NOW! THx♥ OUR WikiLeaks

Please make your Holiday present to the World, just a few emails about this video and to the NIH~ Thx♥


Guest Blog~

Ladies and Germs, I think that Dr. Judy and Annette Whittemore did was HEROIC! I would like to nominate them for the "Heroes of the year for 2010" . Are there any takers?

I can say what they are "too polite" also. Dr. Ruscetti is WORLD famous in retroviral research. He discovered the second ever kNOWN human retrovirus: HTLV-1. He was also RIGHT there at the founding of HIV-1. Along with Dr. Luc Montagnier from France, and Dr. Jay Levy of UCSF in the USA. in 1989, Dr. Jay Levy told me that "THIS CIAS (chronic immune activation syndrome) {this was HIS name for M.E. and CFS} will be the AIDS of the 1990's". 

Dr. Robert Gallo, who was working at the NIH at this time STOLE the working papers of Ruscetti, Levy and Motagner. they were being HONEST and very Careful, and when told to double and triple check all their work, Gallo used that time to steal their work and to go to the US patent office and he got HIS name on the HIV patent and thus got MANY accolades and speaking engagements and $125,000 a year in royalties. Dr. Ruscetti was VERY angry at his work being stolen, and he vowed to NEVER let the NIH and CDC bosses see his work until it was completed, so they could not steal it or squash it! He did this with his HTLV-1 work which is also a human retrovirus that can cause lymphoma's and various cancers. 

NOW, we have the 3rd known Retrovirus, XMRV, and Dr. Ruscetti is right there again with the brilliant and determined Dr. Judy Mikovits and her partner Lombardi, and the equally brilliant, classy and determined Annette and Harvey Whittemore, and their lovely daughter, Andrea. These people are fighting for TRUTH and JUSTICE and FAIRNESS for all of US!. If you know anyone with a foundation or a bequest, PLEASE make a donation to the WPI! We have a link on our site at www.rescindinc.org. you can go there and sign our M.E. Petition and make a donation to the WPI at the same time. You can also listen to Susan Wenger's excellent song about M.E.  

Harvey Alter's comments from last week at the FDA blood working group meetings. Dr. Alter said in effect, that he knew NOTHING about M.E. and CFS six months ago. But he has learned a lot in the past six months. and He now says "Maybe XMRV plays a role in this illness, and maybe it doesn't. But either way, this illness is REAL and it is SERIOUS! and we need to do the work to find out what is causing all this misery to so many people!

 Also, Dr. Kenny de Merlier said two days ago, BIG insurance companies and MAJOR world government agencies are scared to death! this could cost BILLIONS of dollars to treat us. and the liabilities of having government bureaucrats denying treatment to people who were gravely ill with  M.E. and CFS, and Autism, and Chronic Lyme and other illnesses like Gulf War Illness could SUE our various governments for LYING to the public for decades. This could cost MORE billions. And when there is Deliberate MALICE, we can go for TRIPLE damages!!!

So, when people like Ruscetti, MIkovits, Lombardi and Dr. Shyh-Ching Lo, (who discovered various mycoplasmas in the early 1990s relating to sick gulf war veterans). Dr. Lo is, like my friend Garth Nicolson, one of the TOP Cancer Tumor experts on the planet, with more than 500 Peer reviewed articles, who had a daughter who was a helicopter pilot in the First Gulf WAR. She was a smart, hard charging woman who came home deathly ill after the first Gulf War.... and the Pentagon "lost" medical records written in ink. Someone "erased" millions of medical records that were on Pentagon Hard drives, and somehow thousands of HARD copy CDs and DVDs of medical records went missing..

Funny, how 3 separate mediums of medical data went missing....just when 285,000 soldiers got SICK! and many of the soldiers from POOR countries did not get sick and soldiers from France, that did NOT take the toxic vaccines jammed full of squalene, and who took prophylactic antibiotics did NOT get sick, and our soldiers who were jammed full of toxic vaccines, and who ate  Pyridostigmine Bromide tablets like "chiclets". These tablets were to be ONLY taken after a direct exposure to chemical weapons. Professor Thomas Tiedt, an expert in cholinesterase problems testified that a single dose in about 5% of all people will cause lifelong neurological problems, and that just a few dozen exposures will damage the nervous system of about 1/3 of all people who take these tablets. 

Years ago surveys showed that 1 in 4 Gulf war veterans were SICK AS DOGS! even though they only fought for 4 days! 25% of our returning soldiers are now sick! and guess what their disability claims say on them? drum roll please......Fibromyalgia Syndrome, Chronic Fatigue Syndrome, Environmental Illness, Multiple Chemical Sensitivities. and 95% of these veterans are MEN! so, these illnesses are NOT just for women! and the US Pentagon has put $300 MILLION aside to research and care for these soldiers! WE need a piece of that pie! and IF and this is still a big IF, but what if XMRV and other MLV's help TRIGGER these condtions in people with certain genetic or psychological predispositions who have already been exposed to multiple enteroviruses, and HHV6, and the whole world has been exposed to EBV? 

If you watch the "Nevada Newsmakers" clip with Sam Shad. Here is their link: http://www.nevadanewsmakers.net/podcast/downloadfile.asp?file=nnm12222010.m4v 

If this toxic soup adds up to such a mess that even a small amount of XMRV, that could damage our HPA axis. I said 22 years ago, that Louis Pasteur, one of the fathers of modern medicine claimed more than 100 years ago, that "the Terrain is everything, the antigen is NOTHING!" If we have terrains of teachers and nurses and other health care workers and people in the travel industry who are in and out of various countries every month for their jobs. IF these people have a "toxic load" of various insults to their central nervous systems and their immune systems, and if Dr. Elaine DeFreitas was correct 20 years ago, and she had a PIECE of the puzzle, and instead of trying to HELP her work along, the CDC and the NIH tried to SHUT her down, because they were already fighting the First  retroviral epidemic of HIV/AIDS, they did NOT need a second retroviral epidemic of middle class white, nurses, teachers and travel professionals, so they decided to CRUSH the Wistar Institute. 

NOW, 20 years later, the same Establishment mentality is trying to CRUSH and STARVE the WPI of the funds they need to find out IF XMRV is the trigger, the final straw that breaks the camel's back,  Then our national governments and various insurance disability companies will have to PAY a portion of our former salaries, PLUS medical expenses, and Housing allowances, and clothing and for Millions of people for DECADES! 

So, Please do NOT let this attack go unanswered! PLEASE get a copy of Dr. Judy Mikovits and Annette Whittemore from "Nevada Lawmakers" with the link listed above. you can google Sam Shad, the reporter, who has interviewed these same all stars at other times over the past several years, and spread that video FAR and wide! Make that Video VIRAL! That is your job over the holidays. We want that video in the hands of every major newspaper editor in the world who published a NEGATIVE  report on the WPI and XMRV in the past week. 

NOTHING that was said in those studies this week in Retrovirology REFUTES a single data point in the October 8th, 2009 SCIENCE article by Lombardi, Mikovits et al. NOTHING  has to be apologized for, or changed. not a single comma. THIS study told the truth. Dr. Judy and Annette were sitting there calmly refuting all negative claims and answering all charges. WE have the truth on our side. The WPI can back up every claim. We need to write to the head of the NIH, Dr. Francis Collins and the NEW head of the CDC and ask them "what have you done today to REFUTE these scurrilous lies and half truths?

WHY are you allowing these buzzards to pick apart the WPI ?"

Until proven WRONG, the NIH and the CDC should be PUBLISHING every word that the WPI all stars are writing up, and our government should be FUNDING the WPI to the HILT, until they prove themselves wrong. The NIH and the CDC have been WRONG at every turn on these conditions for 30 years! The NIH and the CDC should be sending their BEST scientists and BUCKETS of money to the WPI, so that we can find out WHY so many people are soo sick and find out HOW we can fix them and get them back to paying taxes and being productive citizens again! 

Finally, it is OUR time, and we need to 

"kick off these ankle biters" and 

Fund the Winners! 2011 is OUR TIME!

We are NOT sick of being TIRED,  

We are TIRED of being SICK!

Peace to all men and women of Good will! and 

Beware all of those who try to deny the truth! 

The good guys and girls are going to win this time! 

PEACE! Ciao for now. TMH

 Guest blog, by request, from TMH~

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#99~ Please Thank Dr. Alter ~ He Speaks the TRUTH!

Dear Fellow ME/CFS patients, families and advocates~


Ten days ago, the American Red Cross announced a new plan to "actively deny" CFS patients from donating blood. The Red Cross controls about 50% of the US blood supply.


On December 6th we worked with the MCPWA.org to put an ad in the Washington Post about Dr. Alter and Dr. Lo's article that strongly backed up the SCIENCE paper from October, 2009 from the WPI.


Now, on the 14th of December, the FDA panel voted 9 to 4 to recommend banning any blood donations from any ME or CFS patients until XMRV is ruled in or out as a possible cause of disease.

Dr. Harvey Alter, after a long day of back and forth, where Drs. Mikovits, Hansen and Lo literally "wiped the floor" with naysayers like Dr. Coffin and Dr. Stoye, Dr. Alter came out with an unplanned statement which ended with:

“I'm not a CFS Dr, but have learned a lot in last 6 months.  Absolutely convinced when you define this by proper criteria, it's a very serious, medical disease.  Chars of a viral disease.  If it's NOT XMRV, we must continue the research to find out what is.” (thank you ValB626 for the transcription!)

It is our recommendation that you all write to THANK Dr. Alter at:

halter@dtm.cc.nih.gov

Please write him a clear, "concise and sincere" THANK YOU for his kind/wise comments.

XMRV might be the cause of ME and CFS and FMS and maybe even Autism, MS or Gulf War illnesses...not to forget Prostate Cancer, Lymphoma and possibly Breast Cancer. Whatever the cause, Dr. Alter has been convinced that M.E. and CFS are REAL! And they are SERIOUS!


THANK YOU DR. ALTER for being the ONE new SANE Voice in the Room to STAND UP and SPEAK the TRUTH LOUD and CLEAR.  

Thank you to ValB626 and XMRV Global Action for the following statement from Harvey Alter, M.D.

Dr. Alter:
"when a group finds a new agent, become biased it's real.  When it's not found by another group, they become even more biased it's unreal.

Our goal should be to find the truth.  The truth will out over the next year.  I concur we have no evidence for causality, esp when we're at the LoD and assay perf is so critical.

 But I still want to counter by saying that the current evidence for disease association is very strong that XMRV or MLV is strongly associated with CFS.

In those labs who do find the agent, it's very reproducible.  Year after year, same patients.

 Confirmed by sequencing, reproducible over time.

 Dr. Hanson has demonstrated how critical the assays are.  When tweaked assays, findings identical to Lo lab.

 Diversity of XMRV/MLV being confirmed in WPI lab, so not only agent being confirmed there.

 In 100s of negative controls in same lab, extremely negative, has done what Coffin recommended was also negative.  Always neg for contamination.  It isn't logical to suggest otherwise.

 Stoye used single-case anecdotal info to try to make a case.  Simply because it has happened in the past isn't valid to negate reproducible data from 4 different laboratories.

 I'm not a CFS Dr, but have learned a lot in last 6 months.  Absolutely convinced when you define this by proper criteria, it's a very serious, medical disease.  Chars of a viral disease.  If it's NOT XMRV, we must continue the research to find out what is."


********************************************************
Information taken from the National Institutes of Health Clinical Center


Senior Staff


Harvey Alter, MD
Distinguished NIH Investigator
Chief, Clinical Studies
Associate Director of Research
Department of Transfusion Medicine
Academic Degrees
B.A., University of Rochester
M.D., University of Rochester School of Medicine


Email: halter@dtm.cc.nih.gov

                                           Biosketch


Dr. Harvey Alter earned his medical degree at the University of Rochester Medical School, and trained in internal medicine at Strong Memorial Hospital and at the University Hospitals of Seattle. In 1961, he came to the National Institutes of Health as a clinical associate. He then spent several years with Georgetown University, returning to NIH in 1969 to join the Clinical Center's Department of Transfusion Medicine as a senior investigator becoming Chief of the Clinical Studies and Associate Director of Research in the Department of Transfusion Medicine at the NIH Clinical Center.


Dr. Alter is also a clinical professor at Georgetown University.


Dr. Alter co-discovered the Australia antigen, a key to detecting hepatitis B virus. Later, Dr. Alter spearheaded a project at the Clinical Center that created a storehouse of blood samples used to uncover the causes and reduce the risk of transfusion-associated hepatitis. He was principal investigator on studies that identified non-A, non-B hepatitis, now called hepatitis C. His work was instrumental in providing the scientific basis for instituting blood donor screening programs that have decreased the incidence of transfusion-transmitted hepatitis to near zero.


In 2000, Dr. Alter was awarded the prestigious Clinical Lasker Award and in 2002, he became the first Clinical Center scientist elected to the National Academy of Sciences (NAS) and in that same year was elected to the Institute of Medicine. Only a small number of scientists nationally are elected to both these scientific societies.


Selected Honors and Awards


Appointed as NIH Distinguished Investigator, 2008; Presidential Award, Society for Advancement of Blood Management, 2006; Recipient of the First International Award for Science, INSERM, Paris France, 2004; American College of Physicians Award for Outstanding Work in Science, 2004; Elected to National Academy of Sciences, 2002; Distinguished Scientist Award American Liver Foundation, 2002; Presidential Award, International Society of Blood Transfusion, 2002; Elected to the Institute of Medicine, 2002; Albert Lasker Clinical Research Award, 2000; James Blundell Prize, British Blood Transfusion Service, 1994; Karl Landsteiner Award, American Association of Blood Banks, 1992, Elected to the American Association of Physicians, 1992; PHS Distinguished Service Medal, 1977

Thank You R.E.S.C.I.N.D. for letting me rePost sections of this Info from your website.

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

Thank YOU to ALL of our Heroes~ Be they The WPI, Dr's, Parents, Friends, Advocates, Patients, we LOVE and Need ALL of you RIGHT NOW to help  MOVE This Cause FORWARD and Help us SAVE Our LIVES and Save those lives of the Innocent Public that has had this TRUTH Hidden from them also for 25 years.

Thank YOU WPI for adding Dr. Jamie Deckoff-Jones as the Chair to the Newly formed Clinical Advisory Board. What a PERFECT marriage !! Now you all Rock !!!

PS: Just this morning I received my XMRV test results and I am Positive.

As a 23 yr ME/CFS patient that TRULY Believes I got it while working in the hospital for 17 years before I had my Triggering Event,  I HONESTLY HOPE that we can get the PR and Public OUTCRY this Disease DESERVES. I already lived thru the days of HIV/AIDS and had to go to the SF Conferences for my hospital in the 80's and lost 5 of my closest friends to THAT illness... and have already been tested twice for HIV and was Negative. 

It's a CRIME to HUMANITY that the CDC has let THIS illness go on for 25 years and spread to the point where over 1 million and maybe 4 million of us in the USA already have XMRV XAND not to forget the 10s of millions of asymptomatic citizens walking around STILL donating Blood and they are NOT screening the Blood supply for that YET......   


HELP !

WHAT MUST WE DO TO MAKE THEM "WAKE UP" ?????

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#98~ XMRV in the Blood Supply= No Problem?

December 14-15, 2010: Blood Products Advisory Committee Meeting Draft Agenda 99th Meeting, December 14-15, 2010 The Hilton Washington DC North/Gaithersburg 620 Perry Parkway Gaithersburg, MD 20877

Tuesday, December 14, 2010 1:00 p.m.     Topic II: MLV-related Human Retroviruses and Blood Safety    1. Introduction and Background, Indira Hewlett, Ph.D., DETTD, OBRR, FDA (10’)    2. Summary of Current Research on MLV-related Human Retroviruses and Disease Association, Jonathan Stoye, Ph.D., NIMR, UK ( 25’)    3. Recent Studies of Epidemiology of MLV-related Human Retroviruses:          1. U.S. Study, Shyh-Ching Lo, M.D., OCTGT, FDA (15’)          2. U.S. Study. Maureen Hanson, Ph.D., Cornell University (15’)          3. UK Study, Judy Mikovits, Ph.D. Whitmore Peterson Institute (15’)    4. Animal Studies: Potential Transfusion Transmission of MLV-related Human Retroviruses, Francois Villinger, Emory University (20’)    5. Update of Blood XMRV Working Group Activities, Graham Simmons, Ph.D., BSRI (15’)    6. Prospective and Retrospective U.S. Donor Surveillance Studies, Michael Busch, M.D., Ph.D., Blood Systems Research Institute (15’)    7. Assay Development Efforts on MLV-related Human Retroviruses, Rachel Bagni, Ph.D., National Cancer Institute (20’) 3:30 p.m.     Break 3:45 p.m.     Open Public Hearing 4:30 p.m.     Open Committee Discussion Questions for the Committee 5:30 p.m.     Adjournment Wednesday, December 15, 2010

Opening Remarks, Blaine Hollinger, M.D., Chair Statement of Conflicts of Interest, Announcements 8:10 a.m.     Committee Updates     * Update from the HHS Advisory Committee on Blood Safety and Availability and Summary of November 4-5, 2010 Meeting, CDR Richard Henry, Deputy Executive Secretary for the Advisory Committee on Blood Safety and Availability
*************************************
CDC and ME/CFS/XMRV  History for New Readers ♥

The following note just arrived from Heidi Bauer, via the "Blood Products Advisory Committee Meeting" being held today, in Bethesda Maryland, December 14, 2010.  Heidi received the WPI "Patient Advocate of the Year Award for 2010" Thank you, AGAIN ~Heidi. 

This was provided as pre-meeting background info~ from the FDA.


“The Blood Products Advisory Committee has been asked to consider the issue of donor testing for MLV-related retroviruses even in the absence of confirmed disease causation.  Absent evidence that these viruses have a causal role in any human disease it seems reasonable that the following criteria be met prior to the implementation of donor screening:

1.  evidence of transfusion transmission of these viruses
2.  consistent evidence of association of these viruses with disease, and
3.  development of validated assays for these agents that detect infected individuals but do not implicate non-infected individuals.

“The presence of a virus, and even transfusion transmission of an agent, is not, in and of itself a reason to implement donor deferral or screening.  Since no causal association of XMRV with human disease has been demonstrated, a decision to introduce a blood donor screening assay, were one to become available, would appear premature.  Many commensal viruses, for example Anellovirus species, are known to be transmitted by transfusion but despite extensive study have not been associated with disease.  In the absence of direct evidence of causation, a decision to implement testing should be based on an assessment of recipient risk that includes the prevalence of the infection in the donor population, the transmission rate to recipients and the current best assessment of the risk of recipient harm, compared to currently accepted risks of transfusion.

“Members of the blood transfusion community are concerned about the potential threat to the blood supply posed by XMRV/MLV and are actively involved in efforts to validate quality control panels and develop tests for the detection of MLV-related retroviruses.  However we believe that current evidence does not support introducing any test methodology at this time.”

Guest Speakers today:

Bagni, Rachel K., Ph.D., Busch, Michael P., M.D., Ph.D., Hanson, Maureen, Ph.D., Holmberg, Jerry A., Ph.D., Mikovits, Judy A., Ph.D., Monroe, Stephan S., PhD, Petersen, Lyle R. M.D, M.P.H., Simmons, Graham, Ph.D., Stoye, Jonathan, PhD, Stramer, Susan L...., Ph.D., Villinger, Francois, DVM, PhD

Text messages sent form Heidi ♥

-> XMRV section of FDA meeting starting now.

-> Overall, same old, same old. Presentations are of all the papers that have been published. Committee was presented with questions to consider while listening to presentations.

-> Coffin is telling Lo his mitochondrial tests are not as sensitive as what he uses to detect contamination. Coffin has two papers coming out in Retroviral by the end of the month. Lo is giving his rebuttal.

-> If I am not mistaken, and I could be, Coffin was one of the reviewer who forced Alter and Lo back to the lab before their paper would be released. Lo said in his response to Coffin "we did as you suggested". ?????

-> Lo and Coffin agree though that standards with contamination detection have to be incredible high.

-> Hanson did great! Judy is up next with UK study. Hanson is mainly finding PMRV btw.

-> Can see now why Dr. Mikovits says they learned so much on the UK study. 48/50 positive.

-> UK patients had XMRV. Hard to find polytropic.  

-> There is someone on MECFS forum sending copious notes I am told. Just FYI.

-> Way too many heads nodding in agreement with Stoye regarding contamination, etc.

-> All I can say is Stoye is not worth reporting on. Yawn!!

-> Even committee members find Stoye's ideas and talk laughable I think.

-> It is not all that comforting. He is just not up to par intellectually with the other speakers really. He was part of the negative UK study and a pain in the butt. 

-> Abbott study on monkey infected with XMRV is up. Compelling stuff if people are listening. Even the researchers were not anticipating the amount of viral response that was there.

-> Meeting is running WAY over time.

->  BWG report. No advantage to delayed testing. Run serology along with NAT. NAT though sensitive was unable to detect positives.

       My comment: What the neck is the NAT     Test? We have been able to order the PCR/culture and serology, but have not been told about any NAT test.. Please advise BWG, OK?

->  Dr. Bagni up. Talking about development of seroassay development for labs.

***Brain is drooping guys. Signing off. Will have to leave soon. Thanks!

~ ALL of our Loving Thanks to Heidi for exerting the Precious Energy to attend and Cover this meeting for the Public and the ME/CFS patients of the world. You definitely ARE on our list of Patient Heroes. ♥Hugs♥

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

 This has been a VERY Informative yet disappointing as "usual meeting", as we have unfortunately become accustomed to dealing with. It's OBVIOUS that even tho XMRV and MRV/MLV are being found in labs and people ALL over the world, including Belgium, Spain, Norway, Sweden, Australia and the U.K.~ this does not seem ENOUGH to Budge the Lazy Arses that have never found a Retrovirus that "Promotes Health" so far ONLY disease, yet they don't seem to want to protect any of the blood supply YET. Maybe one of THEM will need to be infected FIRST before they will BELIEVE? Thus has been the case with MANY Drs/Nurses~ until THEY or a Family member gets this they play ostrich.

To anyone that is reading THIS for the 1st time that is unfamiliar with the history of this illness, please let us remind you that our Worldwide Awareness day is May 12th that is the Birthday of Florence Nightengale, as she also had this illness for MANY Years after caring for soldiers after the Crimean War.

http://rescindinc.org/history.htm

 

 

 

Please know that there have been links shown that XMRV is linked to not only ME/CFS, but also Autism, MS, FMS, and cancers such a Leukemia, Lymphoma, an Agresive for of Prostate Cancer, and if a current study bears fruit~ thenit could also be linked to breast cancer and transmitted by saliva... Even a German study has found:

They found XMRV in:

• 3.2% of controls
• 2.3% of those with RTIs & no underlying conditions
• 2.3% of those with RTIs & COPD
• 9.9% of those on immunosuppressive drugs                                       IF it's in COPD Respiratory patients then Hello it might be in their respiratory fluids and transmitted that way...Can you say COUGH?

Please STAY TUNED.. This is an URGENT Health Issue for the HUMAN RACE. Yet no one seems to be paying attention YET.

Will YOU or your child be NEXT ?

I sincerely HOPE that the NIH/BWG "will indeed' be MORE forthcoming "with details" as the PROMISED after the Oct CFSAC meeting OR it WILL be time to start contacting Dr.s Collins and Fauci and Magnan AGAIN~ SOON !
With this brief tidbit today they had Better contact us BEFORE the Holidays with some coherent results from the BWG~ IMHO.

We MAY have Brainfog, but we are NOT Stupid and we also CAN Have the memory of Elephants and DO remember what you promised. 

"KEEP your WORD" or we will know that your word is the same as Trustworthy as the CDC.

...And you WILL be hearing from us..

DO NOT RECESS FOR THE HOLIDAYS W/O CONTACTING US~ 

ARE YOU LISTENING?

Should you and the Government FAIL to ACT and HELP us and the millions ALREADY infected.. WE WILL be hiring a lawyer.         Suing the government worked for the AIDS project. THIS is a Retrovirus ALSO~
..."And the Band Played ON" has alredy been made
MUST YOU REPEAT History ??




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