#110~ The EYES of the World Have it- NIH SoK

2011 NIH State of Knowledge reCap

There WERE people watching from ALL Over the World in all time zones  via LIVE webcast even as after the 2 FULL days a midnight possible
Government Shut-down was looming near...
Dr. Francis Collins, Head of the NIH was in attendance.


Monroe from the CDC was afraid he would miss his plane ~
...a joke that was NOT wasted on the patients that already
KNEW the CDC's history as they dismissed and discarded the First Discovery of a retrovirus connected to ME/CFS 20 years ago by Dr Elaine De Frietas and chose to let it go UnResearched for the mere monetary cost of the 2 airplane tickets they would not buy to Validate the Discovery.
Meanwhile "The Band Plays ON"...


For those that missed the 2 day webcast
NIH- State of Knowledge ME/CFS Workshop
a few things were made very clear..


Here are a few short videos of some of the highlights..


It is now Painfully Clear that there are 2 separate camps now battling
~ one 4 the patients that are XMRV+ and have one or more co-infections,
and those that are ignoring multiple positive labs and thousands of patients XMRV+ over 7 cohorts around the world in 7 different countries.


One camp calls for MORE Research on XMRV and providing treatment for the patients that are already testing positive.


The other camp could care less about the suffering of the patients testing positive for the 3rd Human Retrovirus + one or more co-infections.. and they are calling for XMRV research to STOP.


I ask you~ if people have already grown antibodies for something they have had for 25+ years.. way before any lab contaminated anything... WHY can these patients NOT receive some treatment ? The fact that they had already pre-exisiting antibodies proves that their body had already been fighting the 3rd Human Retrovirus before and labs or scientists started arguing over it. Many have been sick since the 1980's NOT after your 1992 date.


NOT to treat them is tantamount to medical negligence and the medical profession WILL be held accountable and the medical health agencies NOT allowing treatments to be given to these patients will also be considered guilty of inhumane treatment of patients that have been very sick for Far Too Long and ignored by you. You will be held accountable for their suffering and for causing them HARM by your Lacking to Act now that6 you have been Formally Informed~ Period.
You can NO Longer play ostrich while the World watches....


As is stated in some of the videos here below~
This lack of treatment is INSANITY.
The CDC even states that HIV does not cause AIDS.
that AIDS = HIV plus one of 25 co-infections..
Even if you only have HTLV-1 and present as "sick" you can receive treatment...
Thousands of patients are testing XMRV+ and have numerous co-infections.
WHY are they NOT receiving some treatment NOW ?
Many have waited 25+ years and we are on the 3rd generation of people
dying from this illness.


The World is appealing to you..
If not NOW, when ?
How many MORE Generations must get sick and die
BEFORE you will give them Treatment ?


Keep researching for something else if you want,
but for Gosh Sakes HELP THESE PEOPLE and
Treat them NOW !!!
To NOT Treat them is a Crime against Humanity~ Period.


The ONLY thing they are depressed about is your ignorance and refusal to treat them with respect and give them appropriate medical treatment.


If a patient has Cancer do you give them an antidepressant ?
WAKE UP and Treat them with adequate medicine to Help them...


There are many in the medical profession that have this illness now and even they are ashamed of the way the current medical professionals are acting..
Especially when the GPs do not know the difference between a rhinovirus and a retrovirus. What med school did you go to?
Med School for Dummies ?

HOW MANY MORE MUST SUFFER AND DIE BEFORE YOU WILL LIVE UP TO THE HIPPOCRATIC OATH AND "DO NO HARM" BUT RATHER STOP PLAYING OSTRICH AND HELP THESE PEOPLE ??

If you do NOT Provide treatment to those that are XMRV+ with co-infections you are Guilty of letting "The Band Play ON. AGAIN...

Hemophaeliacs be warned, they are NOT screening or cleaning the blood supply.

Anyone receiving a transfusion, "Bank UP your own blood donations" so you can receive your OWN Blood if you are planning an elective surgery like a knee or hip transplant... and Make SURE you tell them to KEEP your Blood for YOU ONLY until AFTER your surgery !!

As one Dr was quoted~ "If this was HIV it would be 1983 now."

For those NOT Familiar with the history behind the Fight for HIV and the blood supply please watch this clip and then you will see for yourself how INDEED~
"And the Band Plays On" is taking place ALL over Again...

Those with XMRV and a co-infection do Not  even HAVE a Name YET !!! yet it Kills....

Here is Dr. Leonard Jason's GOOD case definition for ONLY those with
actual ME/CFS because they Get Post Exertion Malaise and are NOT Depressed.
They are just VERY Sick and want their Health and Lives back.
While they are arguing over symptoms Millions are just trying to Stay ALIVE !
Even so more varied discussion takes place..



The following 3 patients are ONLY able to be there and testify because they
traveled across the country to receive the ONLY drug under clinical trial that is ONLY offered in 2 locations and costs $12,000 plus expenses for 6 months.
That buys "some of them" 3 years if it helps them them must start over and repeat.
They speak for the thousands of us that are in the 20-30+ year group and need Help NOW.


Please note the decrease in funding and grants approved in the last decade while patients are getting sicker, and the 3rd generation is getting infected.
Pat Fero:



Robert Miller:
Answering the Question: What kind of help/treatment do you want for which symptom?
(BTW~ This is NOT A woman's disease !!)
Retroviruses do NOT CARE what sex or race you are !!



Mary Schweitzer presents the list of her co-infections and makes a case for
treatment NOW~ Adults AND Children and Educate the Gen. MDs and Public.
What part of Serious and Urgent do you NOT Understand ?



Dr Judy Mikovits also makes a Case for Treating those infected with XMRV ~NOW !
They can not WAIT another 3 years...



We ask you- WHAT will the COST be if you do NOT choose to Treat these patients?
Are you waiting for their Families to sue you?
Give them Treatments NOW~
They WANT to work and pay takes and have their Lives back..
Many were professionals that can Help society again and our economy
if you will only treat them with compassion and respect.
Treat them while you work to STOP this PANDEMIC !


The Cerus Intercept System CAN clean the Public Blood Supply.
What are you waiting for
Everyone to Die and go AWAY ?
That will NOT Happen because new generations are getting infected.
Get a Clue and WAKE UP~
President Obama we Beg you... Help them get Treatment NOW. Please.


Look how good Magic Johnson is doing on treatments...
Why do you NOT want these professionals to be working and paying taxes ?
Why do you WANT them to Suffer and bankrupt their families ?
If you not choose to Help then you ARE Part of the Problem.
It's TIME to Lead, Follow or "Get OUT of the WAY" of their Treatment~ Period.

Is this AIDS 2.0 ??

What ever you do, no matter where you are, if you have ME/CFS or XMRV, or care for someone that does, or know someone that does, PLEASE write a letter THIS Week  to cfsac@hhs.gov by Sunday, April 17th to speak on their behalf and let your concerns KNOWN so they can be received and Let Your Voices HEARD at the next CFSAC Meeting May 10+11th, (webcast LIVE) with the day after being our International May 12th Awareness Day Worldwide. 

The world Thanks You ♥

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#107~ Guest post, "Laurence's Rant"

Having this blog, I am lucky enough to have a place where I can also give space to those that do not have a blog or a place to use their Voice to Speak UP and Be Heard.. For THAT I am Very Grateful.. We ALL deserve to Be Heard. This weeks guest is from the UK and  a retired Veterarian so very familiar with medicine and how it works and how those who influence that profession behave appropriately or not.


Thank you for your post...
I wish we ALL could have a little pill for MECFS/XMRV/Lyme  etc.
***********************************

Yeah, I'm fine thanks. Keep getting little health problems but my doc says, what do you expect, you're getting to that age? Oh thanx very much. I know my hair's going a bit grey, but I didn't vote for
infectious arthritis in my knee (sorted now with antibiotics - was likely to have been Lyme, what else?), bad ears (OK now), ringworm on my chest (had it years), skin tags on my neck, need for stronger
reading glasses, high blood pressure, breathlessness, chronic cough (I’ve never smoked), weight gain and balding - then to be told it's all down to age. Really? I'm not retirement age yet - well, not for another 10 months.

I still have ongoing problems with my M.E. since Feb 1995 like irregular sleep patterns and need for daytime rests.  Not to mention a degree of impotence/ED brought on by prescribed (never again!)
antidepressants which have long-term or permanent effects, impotence or ED being one, added to the similar effects of M.E. and general age processes. Can be fixed temporarily with those "blue diamonds" but I
have no need presently as I don't have a functional girlfriend. I'm seriously wondering whether it's a good idea to consider inflicting my problems on a new partner, so I cancelled my subscription to a dating
site on the internet after just one date. We met & chatted over a cup of coffee. She was disabled, a leg amputee, nice enough but I didn't fancy her anyway.

A new virus has been found in virtually all M.E. patients, no surprise, we really knew all along. We’ve known ever since MRI brain scans showed lesions the same as in HIV/AIDS - in 1985 - that it was a
retrovirus. Then a retrovirus was found and a paper published in 1991. This showed the virus inside mitochondria, which are the “batteries”
or power-units inside each cell. If they don’t work, you get very tired and weak. That explains everything. Then, just over a year ago, a retrovirus, presumably the same one,  was found in ME patients in America. It’s named XMRV - too complicated to explain why.

Nasty things, retroviruses. They’re never good, usually harmful. They cause lots of cancers - breast and prostate, to name but a couple. People have been studying them for over 100 years. There’s one going
round Australia killing hundreds of koala bears right now. We have two kinds in our pet cats - Feline Leukaemia and Feline Immunodeficiency Virus (AIDS in cats). A Retrovirus is an RNA virus that splices itselfinto the actual DNA of your cells by transcribing itself into DNA. It never goes away.

XMRV affects up to 250,000 people in Britain alone and is the biggest cause of children being absent from school. Thousands of people have lost their jobs, their marriages, their houses, and are dependent on state disability payments, a huge drain on Britain's economy. But the Government won't take it seriously. They could have saved the taxpayer MANY BILLIONS of pounds over the years, and we could have had tests for the virus, proper antiretroviral treatments, and possibly vaccines, by now, if they'd invested money in the necessary research 20 or so years ago.

Instead, the virus has been pinpointed by a small private foundation in the USA, started by a couple whose daughter has been a sufferer for years. The wealthy husband put up the cash and they employed
experienced retrovirologists. They have done very careful research to extremely high standards, high enough to get their paper published in “Science” magazine. Meanwhile, here in the backwater of Old Blighty,our Medical Research Council (MRC) has been persuaded by thepsychiatric profession into promoting the idea that the disease is a mental one and has only been funding research into psychiatric treatments, so we are now well behind the real world. This Government attitude has led to several deaths directly from the disease and dozens of suicides.

I attended an All-Party Parliamentary Group on M.E. at the House of Commons in December ‘09 and the star turn was the Health Minister, who stated that he has no power to dictate to the PCT’s (primary care trusts, local medical services), or to the MRC as to how it distributes its money to researchers! Incredible. So what exactly IS his job? All State research funding is channelled through the MRC.

In the UK we are censored. We’re not even allowed to talk about ME or XMRV in the Press. Or rather, they’re not allowed to print it. All scientific material has to go through the “Science Media Centre” (SMC), a British Government body set up deliberately to censor it. The
Psychiatrists (called the "Wessely School") can of course publish any rubbish they like - and they do.

One group of "researchers", involving the psychiatrist Simon Wessely who selected the patients, published a paper saying they couldn't find the virus at all. Even though it's present in a lot of normal apparently-healthy people. Surprise surprise. They completely refused
to use the same techniques in the lab as the US group. Obviously, they didn't WANT to find it, as Wessely is a well-paid advisor to the insurance giant UnumProvident, and is due to retire with a good
pension from them. The psychologization of the disease has been good for the insurance companies in the US who can deny paying out for mental diseases, but this has been hoodwinking our Government, who
have had to cough up for disability payments and for carers instead, not to mention the loss to our economy of people who once were perfectly functional and working taxpayers. Then there’s all the intolerable pain and suffering.

Personally I'm a lot improved over the past sixteen years but still need to rest a lot. I can think straighter and can now cope with easy crosswords!
♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥
Thanks  Laurence for "Speaking UP."





For those new to this blog, please be sure to check out the new link I have added up at the Top Right for Helping the Research....Please Share and as usual Comments are Always Welcomed."

XMRV Chronicles
If you need a place to post your thoughts on current Research on ME/CFS/XMRV Please leave me a comment and then we will be in Touch, OK ?


I have also added some new blogs on the Right side and  a few Petitions that might be worth a look if you are so inclined.


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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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