#108~ RE: Problem with Trine Tsouderos's reporting on XMRV

I attempted to comment on another bloggers post, but I guess today I must resemble Jerry Weintrab's autobiography, "When I quit talking then you will know that I am dead." Needless to say, it frustratingly kept telling me my reply was too long but instead of having a functional character count, as some reply boxes have so you could know how many characters you had left to use, it would only tell me at the end that I was over the limit.. I gave up and said I would reply over here..

So I urge you to read the Original blog First, so you will know what I am replying to , OK? If you have  a short comment to leave to Help the blog get ratings it would be appreciated. That blogger doesn't usually post often but when they do, they usually have put a lot of time into their research and are ON Target. Thanks for caring about this topic and helping to Stop the Inaccurate Biased reporting.

Original Post

I am adding my longer comment below:

Let's start with the ongoing Dr. of the Original Incline Village cohort and his opinion as expressed in this short audio interview.

Dr. Peterson about XMRV, Oct 2009

If Trine somehow missed Dr. Alter's slide, this might clear up any confusion of the facts..

Let's not forget to show her the video about Dr. Bell's kids and how after 20 years later ~ 70% of those tested on the first go-round, came up XMRV+. Gee that kinda matches the Science paper 67% I think ? Maybe upon further testing the numbers might also go UP higher ... Another specific cohort testing positive. 

And Dr. Bell thinks this will cause a Paradigm shift. Maybe she missed this tiny tidbit. 

Trine can hear and watch the video here:

Dr. Bell's Lyndville Video

Maybe Trine also skipped Dr Cheney's report last year about his cohort of patients that were also testing XMRV+ ?

I was also married to an Investigative Reporter that was a Capitol Correspondent which is why I am living in my state capitol and I know the difference between "valid legit journalism" and rag paper writing. Obviously both the writer and the editor are at fault here cuz the editor must not be informed and is MIA or asleep on the job like that Reagan airport traffic controller.

Either way the result is a sloppy job.

And since I have also tested XMRV+ by antibody that lets me know that I really am, cuz "you simply can not grow antibodies from any lab contaminants" .. unless the lab contaminants were in the lab that was preparing the vaccine you were given as a young child maybe ? humm

I also worked in a hospital for 17 yrs in the 70's-80's and was on our Hospital Health + Safety Committee and was our Rep. to go to the Conferences in San Francisco at at the height of the HIV outbreak.. so many of us know what a RV smells like, acts like and I have never yet seen one to cause health, quite the contrary.  By the way, XMRV has even been shown to be linked to Lymphoma 

(and originally Prostate Cancer) and that was what my mom died from.

Dr. Singh's patents are also building up and it seems that 25% of the breast cancer patients tested also were XMRV+. I can't wait for her paper to come out.. the spin rag writers will be going wild again... Think we are joking ? Here is a slice of her "dark colored breast tissue" that shows which parts are XMRV+

Oh yeah, it's also time for "The Band Play On" and Deja Vu for us 20 years all over again.. Let Trine read this and see just why we are so skeptical, because we have already seen this rerun and there really needs to be some new better factual reporters. Currently we seem to have only 2 that are after the truth. LOOK at the date on this one, please.... and check the Dr's names~

20 year Deja Vu article

 The evidence is building up here, but where the "original contaminant" came from is what is in question. It was certainly NOT in any of the studies that resulted in published papers with positive results.. Whether it was a lab accident way back when possibly with the vaccines~  gee funny that many Gulf War Vets got ME/CFS  after all of the vaccines they were given, even a number of those that never actually went abroad.. Hummm

OR, even worse, maybe there was actually some biological scientific studies being done for bio-warfare purposes and the ticks and fleas that were meant to be the "carriers" accidentally got blown the "wrong way when a low barometric pressure came in and they were blown from Plum Island back onto the Mainland near New York where there have been documented Lyme outbreaks that are now testing XMRV+... Hummm

Whatever the fricken reason.. the bottom line is that we "are testing Positive" and legitimate medical research to help us needs to be done because a retrovirus, no matter how you got it, is a dangerous thing and needs to be treated ASAP. Got a headache take an aspirin, but what do people with retroviruses get currently ? Nada, unless they choose try some of the old HIV drugs because real current serious research to help us has NO Place to be budgeted for and done. Only HIV and HTLV-1 and 2 seem to be legit. Humm funny.. Wonder why ?

If Trine or Dr. Oz or any other wealthy politician had a new human retrovirus how much you wanna bet that the research money would suddenly show up ? Think they would wait for 25 yrs and for 17 million to get it ? I would not want to wish this illness on anyone, but seriously folks, someone had better start "getting REAL" pretty darn fast ! The lives this thing is costing, the $20 billion a year it is costing our economy, the families it is bankrupting, all of this because the CDC has watered down the definition that was only meant to be a description of the Original Cohort, and they have done nothing but water the real biomedical symptoms with psychological symptoms that might be side effects but certainly are most not primary causes of this illness. Had they cared to even follow the first 2 rules of good medicine at the time this would have not happened :

#1~ Take a good medical history 

#2~ Do NO Harm.

They have violated both of these.. 

They did not even care to talk to the patients in that original cohort, nor examine their symptoms, they only cared to look at the sterile negative test results, and because you can't test Positive for a test that has not been invented yet, they chose to make up new symptoms and funnel everyone over into the Psych dept. when they were the ones that should have been receiving the counseling. 

Obviously, they are not capable of disease control or prevention if they are not even willing to honestly evaluate the original patients of a particular cohort.. oh that's right.. they wanted to call it hysteria which would have no cohort.. another attempt to make this a woman's illness which it is not. The men that are testing XMRV+ take exception with this and I don't blame them.

(root word: hystera) 

Origin of HYSTERIA

New Latin, from English hysteric, adjective, from Latin hystericus, from Greek hysterikos, from hystera womb; from the Greek notion that hysteria was peculiar to women and caused by disturbances of the uterus

First Known Use: 1801

Viruses and retroviruses do not follow the rules of countries and obey "do not cross" any country borders. Why would M.E. be in Canada but not be able to cross not the USA ? Especially with today's convenient modes of distant travel for humans let alone birds or other insects.. why would a virus behave according to CDC limited thinking beliefs, duh ?

CDC the cohorts are showing up and now testing positive for XMRV. 

World wake-up.... I had 5 close friends die from AIDS, but even with AIDS only one life is taken. With ME/CFS and now with a retrovirus showing up in 4 of the original cohorts and many others that are being tested now, guess what? This IS contagious and you have been negligent for the past 25 years. 

The joke amongst we the patients is that "the Good News is: You don't have AIDS.

The Bad news is you don't have AIDS."

This disease will kill you 25 years earlier but will give you many other diseases along the way, cost you and our medical system a lot of money and frustration, you will be belittled and treated like you do not have any biomedical illness. 

They keep telling us "it's all in your head", but actually just like the scans Dr Cheney had done originally with his own  money up at Incline Village of the the brains of the Original Cohort, when showed to a friend of his that was  another Dr., that Dr. told him, "These look just like the scans of my patients.. and they have AIDS." So guess what, it's not all in our heads, close.. it's IN our Brains... Isn't that where M.E. goes ? Why have you not been looking there if you keep thinking it's in our heads Then SCAN THEM darn it... Enough of your double-talk and enough of this poorly researched reporting... 

Either "get the facts correct" or keep your computers turned off and do not publish any more pyschobabble cuz we have heard it all before.. and sadly for you we are not dead and we do remember things and the internet and laptops became mainstream and your errors have been documented whether CDC or reporter.

As another saying goes.. 

"It's either time to lead or get  out of the way"..

To the CDC is say:

"Take DOWN that CBT and GET junk off of your website." You are showing that you are still functioning in the 17th century by doing so. This is the 21st century. Please start behaving like a First Class Medical Research Facility or we will make sure you are replaced with one. You are digging your won grave and playing ostrich in the meantime. Discard that abomination that you call your "5 year plan" and put someone in charge of rewriting it that has some functioning brain synapses and dendrites. I think you have been "buying your own BS for far too long."

We even have many in the medical profession that have it because we have been on the front lines of where all of these viruses were.. Trust me, these people believe "really FAST" that this is not "all in our heads," because they like most of us were active and not depressed when we were suddenly struck down by this virus.


ALL of the Dr's that have Seriously worked with these cohorts have "Always Believed" that a virus was involved, and its time that everyone start waking up, before someone in your family gets it next.
 
The first job of a virus  is to infect, duplicate and spread.  Guess what~ Retroviruses are excellent at doing this because they get into your DNA. I believe that the CDC forgot this or does not want to face another retrovirus that they ignored and let spread. Their hands were full with HIV and so they let this one go because people were not dying "instantly."

Clearly, there are only a few leaders regarding this topic both in the medical research field and the reporting arena... and we know who they are.. and who they are NOT. 
At this point~ Trust MUST be Earned.


Those that want to have any serious honest constructive conversations with us on any topic know how to find us and we will be very open and willing to discuss things realistically.

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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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#96~ CFS Patients Run 1st EVER Ad in Washinton Post

Chronic Fatigue Syndrome Patients Run First-ever Ad in The Washington Post

 

By MCWPA

  --Possible New HIV-like Retrovirus in Blood Supply--
Dec. 6, 2010 /PRNewswire-USNewswire/ -- In an unprecedented move, chronic fatigue syndrome (CFS) patients published a half-page ad in The Washington Post today. The ad brings attention to new, HIV-like retroviruses, including XMRV, which have been linked to CFS and aggressive prostate cancer, and have been detected in healthy blood donors. The ad was created through the ME/CFS Worldwide Patient Alliance (MCWPA), a grassroots patient collaboration formed in August 2010 with the support of P.A.N.D.O.R.A., Inc. From their beds and wheelchairs, patients spent decades watching researchers, scientists and physicians debate about the cause or nature of their illness. Now, they are adding their voice through a campaign that calls for biomedical research funding, fast-track treatment options and improved patient quality of life.  CFS, also known as myalgic encephalomyelitis or ME/CFS, is a disabling, sometimes fatal NeuroEndocrineImmune disease that afflicts more than one million Americans and an estimated l7 million people worldwide. 
 
(Photo: http://photos.prnewswire.com/prnh/20101206/DC12334 ) 

ME/CFS first gained national attention amidst the AIDS epidemic in the early 1980s. As early as 1991, a retroviral link to ME/CFS was discovered by Dr. Elaine DeFreitas of the Wistar Institute, but subsequent retroviral research was halted by the government. Although more than 4,000 peer-reviewed articles in medical journals have pointed to system-wide immune, neurological, endocrine, gastro-intestinal and cardiac abnormalities, a biologically-based diagnostic definition has eluded doctors. The result has been a catastrophic lack of care, ineffective (sometimes harmful) treatments and a shorter life span for those who are ill. The leading causes of death among patients are heart disease, cancer and suicide. The disease occurs in people of all ages, from children to seniors, and also has a higher incidence rate in families and has occurred in cluster outbreaks.
"This can happen to anyone," said Sita G. Harrison, spokeswoman for the MCWPA. 

"ME/CFS is devastating and the lack of care has hurt us all. We ask the government and health care agencies that we put our trust in to help the millions of people who are suffering and to fund more research now."
A major scientific breakthrough occurred in October 2009 when the Whittemore Peterson Institute (WPI) at the University of Nevada, Reno, working with the National Cancer Institute and Cleveland Clinic, published the results of a landmark study. The seminal study, published in the leading scientific journal, Science, discovered the third human retrovirus, XMRV, in the blood of 67% of ME/CFS patients and in 3.7% of healthy controls. This suggests that up to 10 million US citizens could already be infected. This finding was later confirmed by the FDA, NIH and Harvard Medical School in a study published in the Proceedings of the National Academy of Sciences. Their results linked a family of human gamma retroviruses (to which XMRV belongs) to ME/CFS at a rate of 86.5% and 6.8% in the healthy population, bringing the total of Americans who may be infected up to 20 million people.

"The NIAID, the national institute responsible for infectious disease research, has yet to fund XMRV research in ME/CFS or any other disease," explains Annette Whittemore, President of WPI. "WPI has had its last six XMRV-related grant proposals turned down; despite the fact that our researchers have proven XMRV is transmissible and infectious."

MCWPA is advocating for a budget that is in line with other NeuroEndocrineImmune diseases. Currently, only $5 million for ME/CFS research is in the NIH budget, far less than similar diseases such as multiple sclerosis ($l44 million) and lupus ($121 million).  Patients also ask for antiretroviral and Ampligen clinical trials that have shown great promise in mitigating the effects of ME/CFS.
For more information, to donate, or for more resources and spokespeople, including leading researchers, scientists, physicians, patients, and historians please visit http://mcwpa.org/ .

About MCWPA: Our mission is to create an effective, cutting-edge advertising campaign addressing the poor quality of life of individuals with ME/CFS. By issuing a collective and unified statement, our community will no longer be silent and invisible. The MCWPA ad campaign is supported by P.A.N.D.O.R.A. Inc.™, Vermont CFIDS Association, Inc., R.E.S.C.I.N.D., Rocky Mountain CFS/ME and FM Association and the Wisconsin ME/CFS Association, Inc.

CONTACT:	Sita Harrison/TinaTidmore 561-313-1835 205-680-6890 Media@mcwpa.org

SOURCE MCWPA

Read more: http://www.miamiherald.com/2010/12/06/1959341/chronic-fatigue-syndrome-patients.html#storylink=fbuser#ixzz17JpKWLPH

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#94~ Dr. Mikovits 4th Anniv ~ WPI Research Director

I would personally like to take this opportunity to "Give Thanks" TODAY, on this, the 4th Anniversary of Dr. Judy Mikovits becoming the Research Director at the Whittemore Peterson Institute.


Because of the the persistence of the WPI and Dr. Mikovits unwavering determination 
to find the Real True Honest cause of ME/CFS and her insistence to meticulous methods 
and continually detailing her progress and her co-operation with other Medical Research Organizations AROUND the world, we CAN ALL say "without a Doubt" that it WAS her 
participation in the "Oct 2009 Science Paper" that has put ME/CFS back ON the radar of the medical and patient community.

Dr Mikovits Bio:  she's one smart cookie :)



"Dr. Mikovits spent more than 20 years at the National Cancer Institute in Frederick MD during which time she received her PhD in Biochemistry and Molecular Biology, investigating mechanisms by which retroviruses dysregulate the delicate balance of cytokines in the immune response. This work led to the discovery of the role aberrant DNA methylation plays in the pathogenesis of HIV. Later in her career at the NCI, Dr. Mikovits directed the Lab of Antiviral Drug Mechanisms (LADM) a section of the NCI's Screening Technologies Branch in the Developmental Therapeutics Program. The LADM's mission was to identify, characterize and validate molecular targets and to develop high-throughput cell-based, genomic and epigenomic screens for the development of novel therapeutic agents for AIDS and AIDS-associated malignancies (Kaposi's sarcoma). Formally trained as a cell biologist, molecular biologist and virologist, Dr. Mikovits has studied the immune response to retroviruses and herpes viruses including HIV, SIV, HTLVI, HERV, HHV6 and HHV8 with a special emphasis on virus host cell interactions in cells of the hematopoietic system including hematopoietic stem cells (HSC). Dr. Mikovits' commercial experience includes serving as a senior scientist and group leader at Biosource International, where she led the development of proteomic assays for the Luminex platform that is used extensively for cytokine activity assessment in therapy development. She also served as Chief Scientific Officer and VP of Drug Discovery at Epigenx Biosciences, where she led the development and commercialization of cell and array-based methylation assays for drug discovery and diagnostic development. Dr. Mikovits has co-authored more than 40 peer-reviewed publications that address fundamental issues of viral pathogenesis, hematopoiesis and cytokine biology. "


Before the WPI and Dr Mikovits the prior 10 years
I could hear the sound of the hallow empty vacuum
sucking the life out of all of us nonstop. 
NOW because THAT paper has revitalized the Research community , 
patient involvement and advocacy we all are 
vowing 
that THIS TIME we are going to grab this Golden Ring and 
NOT let GO until they have Found a CURE for ME/CFS.


This year after the CFSAC saw it's new Chair Chris Snell, PhD in April and 
the CFSAC~FDO Wanda Jones PhD, getting in contact with Dr Koh the Asst. Sec 
to Kathleen Sebelius, Sec of the DHHS that sits on the Obama Cabinet, 
and Dr Koh for the 1st TIME EVER attended part of the April CFSAC meeting.
I have absolutely NO DOUBT that it was Dr. Jones past history with the 
HIV retrovirus and her knowledge of the 3rd human retrovirus XMRV
that had now been connected to ME/CFS patients that prompted a 
First Time EVER Response from Kathleen Sebelius to the CFSAC regarding 
their recommendations to her. 
Here is her letter that was dated just 
Before the Sept. 2010 CFSAC meeting that has been 
documented here previously...

As we all know, that Science Day was a smoke-screen for the truth that
that the following 2 days of the public meeting would uncover, particularly due to the Well Participated in "Time for Action" Campaign by the patients and the CFSAC members that have had First hand patient experience and could speak tho the Truth.

With this post I wish to accomplish 2 things..

Thank Dr. Judy Mikovits for her ground-breaking research that has been of tremendous help to us in advancing the "real science" and interest in our plight... 

...and thus because "at this present time" there is NO other Research place like WPI that has been totally built in conjunction with  a medical school and other researchers and a public/private partnership with the University of Nevada at Reno, that will include a patient clinic when it opens SOON, I hereby ask anyone reading this to PLEASE ask anyone that will possibly be asking you what you want for a Holiday gift.. ???  to....

Please just ask them to Donate to the WPI to help advance research, treatments and hopefully one day a Cure 4 ME/CFS patients with NeuroImmune diseases.

Donating can easily be done by clicking HERE. 

I am including the links so you can easily pass them on to those who might ask.

http://www.wpinstitute.org/help/help_donation.html
Those on Facebook can easily donate using the "Cure 4 ME" FB Cause page HERE.
and http://www.causes.com/causes/399439

The 2nd thing I wish to accomplish is 

...to bring your attention to helping our other "Sister Center" that we are working 

to get built on the East Coast of the USA, the future NEI Center (TM) 

that will be for  NeuroEndocrineImmune disorders.

This would also be a wonderful time if you haven't yet to "Please sign ONE of the petitions" asking Sec. Sebelius to meet with a representative from PANDORA concerning the NEI Center. This would be a perfect time to remind her how the future NEI Center would help and benefit those with NEI disorders.

HERE is the petition on change.org
and HERE is the petition on FB.

Please remember to ONLY sign ONE of the Petitions, OK.

Most of you already know that the Gift of Health is the Best gift you could give anyone. Please help us all reach this Dream for the 40 million of us with these illnesses. As the USA approaches their Thanksgiving Holiday next week

let us Help GIVE the Gift of Health by a simple donation and one signature.

After that~ your Thanksgiving meal, I promise, will taste Better ♥

I will NOT apologize for sharing this video 
with you again ♥ and Please "Sing Along"
Together we CAN DO This!!!





If you are now feeling Motivated and 
want to do MORE...
Please up Top Under where it says "Current Event"
and Click on Any RED Action and pick 
an action you would like to participate in 
Help us Spread the word of This Action also, OK?

♥ We "Thank YOU" from around the World ♥

PS: While you are here, please 
take my Reader Survey :D


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#86~ CFSAC "Computer Act-Up" Please....

OH~ Can you PLEASE do us a HUGE Favor????
YES, this applies to ALL of you Around the World

Many ME/CFS folks "Around the World" have been.... shall I say 

"a bit MORE Than UPSET" at the Lack of Topics included in the 

Proposed Agenda  AND some of the topics INCLUDED in the Agenda...

For ALL of the TALKING and WRITING for 25 years this Agenda
seems to be nothing more than a Rubber Stamp of the CDC revised website.

This is NOT "to be tolerated" as we have been FED UP with the CDC
and their cover-up, their belittling naming of this illness causing mass WORLD Confusion, their INtentional Continued use of the WRONG Definition of this illness and thereby dummying down the cohort they select to test with..

Their "Can't Detect C*^p"  tunnel-vision is NOT to be Tolerated, esp. AFTER they had been sent Active LIVE Strains of the the XMRV Retrovirus+"Explicit Instructions for Detection" 
back in Oct 2009.
What did Reeves DO with them? 

Since MOST of us ARE "really" too  sick to do a "Mass March" on the CDC Building.

And we doubt SERIOUSLY that the CAA will do anything EQUALLY effective to Bring the MASS MEDIA PR attention to OUR Plight that 

they "claim" to represent.

It is now time for us to do the one thing we CAN DO.......

"Wage a Computer LOG-IN"  of the CFSAC meetings ~  ALL 3 days.....

Log-in and BE Counted !!!!

We are Trying REALLY Hard for 3 days or as much as possible
to "get the WORD OUT" if you can get as many 
members/friends/family as Possible, that would be GREAT !
even if they will be sleeping during this time....
to "Log-in their computer" to the 3 days of the CFSAC meetings
covered LIVE via webcast..and just "LET IT RUN"........
they can "turn down the volume" to sleep even....
as these WILL be captured and put on Youtube shortly after
and then will be MUCH easier to View..

Cuz we VERY MUCH NEED people to "Log-in"

as "the Gov't COUNTS the # of people logged-in"

and we are wanting a HUGE Number to SHOW

them we ARE Paying ATTENTION

to what they are doing... OK??? Pretty Please...

You will have to convert the date/time but it's
Oct 12, 13, 14- 8:30am-5pm EDT in Wash DC..
Info schedule and "click links" on the Right of THIS page...
http://www.hhs.gov/advcomcfs/index.html

"PLEASE" *VERY IMPORTANT*
Make SURE you EACH go to the website for Real Player
http://www.realplayer.com ASAP
and have the MOST RECENT Version installed
"AHEAD of Time and have it installed"~ OK?
It is NEEDED to watch and log in.~

Thx and ♥Hugs♥ and pass this to as many people as you can
around the WORLD, as THIS is the 1st Meeting AFTER the XMRV Workshop
and Day 1 is a Science Day and Day 2 + 3 are
the meetings w/public input by folks you will probably know ♥

But the AGENDA has us REALLY UPSET !!!
And This is "But one" of our ways of Registering" with them

So they CAN SEE that we ARE Paying ATTENTION

and will NOT PUT up with any CDC- BS
they try to use that on us.. capiche?

 

 Tell Everyone to Mark Their Calendars and HELP US in

THIS Cause. Pretty Please..

We ARE Trying to get a MINIMUM of 1,000 computers "LOGGED-IN"

Just make SURE you Download the Most Current Version of Real Player NOW..
and  SHARE this with your friends and whomever you think WILL HEP US...
and  we will send you out a reminder a few days before the Actual time  to 
Log-In.. cuz you can NOT log in very much in advance..OK?

You CAN "Commit" Right NOW to Helping us by  making sure you have the

Latest version of "Real Player" and are "READY TO GO !!!"

Thanks in advance for ALL of your HELP.. to Help US BE Counted...
We will NOT Be INVisible ANY LONGER...period.

Help us Stand UP 2ME

Help us Stand UP 2CFS

Help us Stand UP 2 the CDC

Help us stand up to this Crime Against Humanity.

Help us by Agreeing to "LOG-IN"

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#82~ CFSAC Testimony by Tom Hennessy, Jr

TMH has give me permission to reprint his CFSAC Testimony to this blog.
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To: Wanda K. Jones, Dr. PhD

     Executive Secretary

     CFSAC

     HHS

     200 Independence ave. SW

      HHB Room 712E

      Washington, DC 20201

Dear Dr. Jones,

                     As a 24 year bed bound M.E., FMS and CFS patient, and an attendee of most of these meetings from the inception in 1994 of the first CFSCC (that we FOUGHT for  for 5 years, with Dr. Phil Lee from SF, CA, the ASST. Sec. for HHS under Donna Shalala to get the first one started) until 2004 or 2005. I finally gave up because the head of HHS either never READ the recommendations of the HONEST members of the panel, or never acted on them! 

                    When Dr. Phil Lee pushed Congress to create the first CFSCC, it was the ONLY such committee dedicated to only ONE disease in the Entire government! The very first charter called for the person in Dr. Lee's seat (the number two person in the entire US health services. At the time this included ALL Social Security, ALL Medicare, All medical departments of the US government. Dr. Lee and Donna Shalala were in charge of $662 BILLION per year. This was Twice the Pentagon budget at the time!) to CHAIR the meeting twice a year.

                        I heard some government employees complaining during a coffee break that they had NEVER seen such a committee dedicated to a single disease before, and they went on to say that it must have been because of the "clout" of the CFS patients. HAH! we have soo much clout, that out of a $32 billion NIH budget, we don't get enough money to purchase paper clips for a single study, let alone anything close to what 17 million or more sick, homebound and many bedbound patients around this big world need and deserve.

                         Because of the new found interest in this brutal condition with XMRV research at WPI and other centers around the world, and also, because I have watched YOU, Dr. Jones actually try to run a fair meeting, I would like to request a speaking slot for 5 min. I have a little apple computer with a tiny camera that could be used on video testimony if you have a set up for it. or I can type something up and email it in. I am stuck in a nursing home in Florida. I don't have a printer close by, or large envelopes to mail in my testimony. If someone could print out my testimony in your office, maybe that would suffice. So, I can phone in my testimony, or email it in, or give it over a video link from my little personal computer. I am now destitute and recovering from a broken back, cracked ribs, crushed sternum, cracked occipital bones and crushed vertebrae in my neck from a little auto accident I had where I blacked out on the way to the ER and I hit the back of a broken down semi tractor trailer near Fort Lauderdale, Florida.

                       I was recovering from a 4 day visit to a local hospital in which the insurance company that i contracted with to help cover some costs that Medicare didn't cover, and they put me through half a dozen tests because of my severe high blood pressures 187/117, and weird heart spasms I was going through because i was to ill to attend daily detox treatments that the insurance company might pay for because of the extreme neuropathies probably related to lyme disease, which is often a co-factor in M.E., FMS, CFS, GWS and related disorders. Like many other M.E.  patients, my illness has worsened over the years. I call it Myalgic Encephalomyelitis, which was the name given to this condition by people who actually KNEW something about this condition. There has been a WHO code 93.3 for neurological M.E. for about 40 years. The truly Awful CDC "CFS" definition of 1988, called the Holmes Criteria,  was a garbage diagnosis put together mostly by NON experts, when the REAL experts refused to sign off on the work product that the mid level government bureaucrats tried to force upon the real M.E. experts back in 1987. The Holmes criteria for "CFS" was put into the annals of Internal medicine way back in March of 1988. I  have been VERY sick, every single day since i first collapsed on October 23, 1987.  good timing! This disease is cruel beyond the imagination of most mere mortals.

                Since we M.E. patients have had TERRIBLE luck with many of the "CFS" personnel at HHS over the years, I must mention that I have heard quite GOOD reports about you from my friend Marly Silverman from PANDORA and other sources. I have heard that you have pushed for phone or email submission of patient speeches to be more accommodating to some of the sickest patients on the planet. Thank you for that. Regarding the videocasting of the meetings and allowing more people to give testimony. THANK YOU for that!

                 For years, I lived in the basement of my late father's home in Potomac, Maryland and I used to drive in with the testimony of half a dozen sick people from around the country. People who were too sick to make it to Washington, D.C. or too broke to afford a ticket to DC, would email me their testimony so that it could be read OUT LOUD to the CFSAC committee. Supposed summations of patients' testimonies were supposed to make it into the record, but this rarely happened in the early days.

               And EVERY darn Time, over the years from the late 1990's to the mid 2000's, the staff from the CDC or NIH or HHS, would make it HARDER to give legitimate testimony, not easier. These people should have been PROSECUTED for the harassment they gave me and other patients. First, they accused me of MAKING up testimonies of various people who I did NOT know , who had been seeking me out on the internet, because I had offered to READ the actual testimony of sick patients. Then, on a subsequent meeting, I was told at the last minute, that I had to have a SIGNED and Notarized statement saying that I was allowed to give the testimony of that person. This was a completely new and arbitrary rule. I  was already bedbound and was simply trying to allow people who were too ill or too poor to come to D.C. in person to just participate in their legal and legitimate attempt to get the care that their Tax dollars had paid for. 

                 And what did i get for these efforts to help my fellow very sick colleagues? Harassment in the extreme!

                The behavior of members of the HHS, CDC and NIH staff was criminal!

                 Another time, they  called my home at 7:15 pm on a Friday night, before a Monday morning meeting to say that the new Asst. Sec for HHS had just called them and told them that No ONE was allowed to read other people's testimonies any more, for ANY reason, unless the writer of the speech was in attendance. Since it was snowing at the time. and it was after 7 pm on a Friday night, I KNEW for a FACT that there was NO Asst. Sec for HHS in his or her office on a Friday night when it had been snowing since noon. So, I KNEW that the staff member who was calling me, was lying. All the local TV stations were saying how schools and government offices were shutting down early for the weekend since noon time, so that people could go and pick up their children for the day. This supposed meeting had taken place at 6:30 pm on this Friday night, when we had school closings and government office closing bulletins, since 12 noon. The ENTIRE reason for the phone call was to harass and disorient me. But the fool who called forgot that our family had lived in the DC area for 30 years, and i knew how the town worked. especially government offices.

                No person "that high up" the HHS food chain would even know who spoke about what disease, let alone care enough to stifle a troublesome advocate on a Friday night, over a snowy weekend. The newly appointed asst. Sec. for HHS would not even CARE who read who's testimony at some meeting for a committee that the particular HHS big shot had not even attended the meeting that was called for in the CFSAC charter. These people NEVER listened to or responded to the testimony of the professional members of the CFSAC, let alone  the sickest of the sick anyway! It was heartbreaking that many very, very sick Americans, and their friends around the world, would work for weeks or months on their 5 minute testimony, hoping and praying that it might make a difference. And those of us who KNEW better, knew that these great speeches would end up in the circular file, destined to become liners for the recycle bins, rather than being kept as a legitimate document on how we might actually help some very sick people find treatment for one of the most vicious medical conditions in the world. Many of the people who wrote to me, could not feed themselves. or sit up to eat. Many drank their meals through straws. The debility of this condition is just amazing. Between emails, post cards, hand written letters and beautifully typed Resumes and 10 page missives about how their once brilliant career was ruined, I have read more than 22,000 such letters. I would not believe it myself, if i did not live through it.

                    Even last week, I witnessed some portly buffoon, a Dr. Stoye, who was in charge of the Q and A for the first XMRV meeting at the NIH. He couldn't have been more rude and condescending if he tried. I have lived outside America for more than 5 years, and I am fairly worldly, but to have someone who is NOT American running a meeting at the NIH, where the New Director, of the NIH, Dr. Francis "the singing doc" Collins opened the meeting saying that it was a "momentus" time and that "great things" were expected from this panel, it was a less than auspicious display. Director Colllins charged Dr. Anthony Fauci of the NIAID, with dispensing the top virus hunter in our country to work with these Retrovirologists to get to the bottom of the XMRV mystery and whether it does or does not cause all or part of this vicious disease. 

                         The world wide press was interested enough to run more than 325 media articles in the past two weeks because a top NIH and top FDA researcher had mostly backed up the work of the Lombardi et al group from the WPI last year, that claimed that the newly discovered XMRV retrovirus, only the third known retrovirus in the world after HTLV-1 and HIV, MIGHT have something to do with the misery experienced by at least 17 million people around the world who suffer unbelievable nerve and muscle pain, cognitive impairment, completely non-restorative sleep, AND the distrust and derogatory smears from former friends and family alike. Most of us can NOT get even barely adequate medical care. There are very few palliative care items available for even minimal care, even after at least 30 years of top government officials KNOWING that this is a serious medical condition.

                          It has been DISGRACEFUL by any stretch of the imagination.

                  

                      Dr. Jones, we are not a bunch of meretricious valetudinarians. It is a crime to be so sick and to be treated SOO badly by the very government officials that are charged with taking care of us, and getting to the bottom of what is causing all this misery should be Agenda Item #1. 

                 Back in 1989, I claimed that we were losing at least $9.1 BILLION in government revenues Per YEAR from just lost tax revenues from what these sick folks would be paying, if we were not so sick. Dr. Jones, I repeat, That was way back in April of  1989. That number now is closer to $20 Billion per year!. and what do we spend on researching M.E. and CFS? 
a mere 3 or 4 million...and most of that has 
been siphoned off to pet projects of other researchers.

                       All the while, those of us who speak up are exposed to the kind of harassment i just described from the very people that our taxes pay to help fix our health problems. It is immoral and it should be illegal. Until you came along, Dr. Jones, this was NOT the exception, this was the rule.

                       I was in the room, lying on my foam pad when Dr. Phil Lee, who has been a friend of mine since 1987 , two years before I collapsed, openly chastised these people, but nothing ever happened. To be so sick and then to get hassled for simply trying to testify before a meeting of people who were trying to do good work, but who were totally ignored by our government leaders was disheartening in the extreme. I hope that with the discovery of XMRV things will change for the better. But, sadly, I am not as sanguine as our newbies are. Fool me once, shame on you! Fool me twice, shame on me!

                       Until I see serious amounts of money and top researchers assigned to this terrible plague, I will have to be counted as a skeptic.

                      I sincerely, hope and pray that you will prove me wrong.

                     Thank you for your time. 

Sincerely,

Thomas M. Hennessy, Jr.

http://www.rescindinc.org

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Thank You Tom for sharing your Testimony with those that have not been present for all of these Crimes to the American Citizens and our Humanity. I also wanted to include this for those that have not read Osler's Web yet to get just a taste of the rude behavior we have been 

 subjected to since the beginning...

Please watch this video and SEE just HOW Critical and What a Difference REAL research "applied in a timely manner" CAN DO to Help many of us with many of these different associated illness... Thank You.

#61~ Annette Whittemore CFSAC Testimony 5/10/2010

Written Testimony Submitted to the CFSAC by Annette Whittemore/WPI  for the CFSAC May 10, 2010 meeting.

Reprinted with permission from the WPI.

Whittemore Peterson Institute

Testimony of Annette Whittemore

CFSAC

April 25, 2010

The United States governmental entity responsible for alerting and protecting the American public from threats to their health is the Centers for Disease Control, better known as the CDC.  The CDC’s mission is to collaborate to create the expertise, information, and tools that people and communities need to protect their health – through health promotion, prevention of disease, injury and disability, and preparedness for new health threats.

Yet, one to four million Americans still suffer from a poorly understood, debilitating disease which was first identified in the United States in three separate recorded outbreaks over 25 years ago, including:

Incline Village, Nevada

Lyndonville, New York and

Miami, Florida.

The individuals who became ill that year came from various economic classes, different age groups, including children and adults and affected people in a small rural town, a large lakeside community and a huge metropolitan area.   The individuals in those outbreaks all exhibited the same complex symptoms, yet none of the patients were examined by the government employees who were sent to investigate. 

The doctors who alerted the CDC were not told of the other communities in the United States experiencing the same phenomenon.   Despite the serious concerns about the severity of the patient’s symptoms and their rapid decent into disability, the CDC refused to investigate further.  The CDC concluded that this was a new form of EBV mono.  They convened a meeting, in which they decided to call this illness “chronic fatigue syndrome” rather than adopt the name that was being used in the UK: myalgic encephalomyelitis (M.E.).  M.E. at that time was already a well characterized infectious neurological disease causing a similar complex illness.

Thus began a twenty five year battle between patients and doctors who fully realized the severity of this illness and a government that has yet to commit an appropriate level of financial resources to aid the discovery process necessary to help individuals with this disease.  Not only has the lack of adequate resources been a major road block to discovery, but the CFS scientific review committees are currently ill-equipped to review many of the biologically complex scientific grant requests.  Attempts to engage in biological research by basic researchers from virology and retro virology have generally been turned down in favor of studies aligned with a psychological theory of illness. 

Years of misdirected research have resulted in a lack of a medical specialty for this group of patients to rely on for expert care.  Doctors have been left without adequate knowledge and the tools to effectively care for their patients. The sick have been turned away by major medical centers, ignored by government, and their claims denied by insurance companies who refuse to pay for diagnostic tests and experimental treatments.

How could this happen to such a large group of sick people in this day and age of modern medical technology?  Who could possibly benefit by this inhumane treatment of sick human beings?

My husband is fond of the quote made popular in the Watergate era: “follow the money”.  His take on it is more specific: When something doesn’t seem right, “follow the money”.

 

So if one follows the money in this case, we can perhaps begin to unravel the mystery of this crime against humanity.  We know that when this disease was first reported to our governmental authorities, another more deadly illness had recently been identified, HIV-AIDS.  Our nation was debating how to approach this new “gay man’s disease”, until it struck a young child and a famous athlete, neither who were gay.  Countries around the world were struggling to meet the heavy demands of HIV, when myalgic encephalomyelitis began to take its equally heavy toll on the lives of the innocent.

But this disease was a disease that apparently could be ignored.  It seemed to impact mainly woman.  There was no immediate organ damage that could be detected.  It did not kill the afflicted rapidly enough; it only caused a profound disability that could last a life time.  

However, a life time of disability requires a life time of disability payments and huge medical bills; something no government or private health insurance provider wants to be responsible for.  The only way to avoid medical and disability payments for the sick is to claim the illness is due to a psychological disturbance or mass hysteria, blame the patient for their illness and offer cheap psychological treatment and exercise therapy.   As long as no one discovers the true cause of the disease, these entities are safe from any expectation of actual medical intervention.  A physical disease may remain in the psychiatric domain if it is called a psychosomatic illness; “meaning a disorder in which mental factors play a significant role in the development, expression, or resolution of a physical illness.” 

Despite years of private research and thousands of papers describing the physical deficits found in these patients with this illness, our government and medical entities continue to ignore the evidence in favor of those who espouse a simplistic psychological theory of illness. 

But those who stand to gain by misdirecting research funding can not stop the truth from being revealed.  What greater evidence is required to support the request for responsible action than the finding of a new human retrovirus replicating in this population of patients?  Knowing the significance of this discovery, why has the US government not asked CFS patients to stop donating blood until the cause of this disease is better understood? 

Prostate cancer and XMRV research has been made a priority at the National Cancer Institute and major universities as evidenced by the publication of new findings.  Yet, there has been no such commitment by those at the National Institute of Allergy and Infectious Disease.  Why is this?

Are we to blindly and meekly accept that those who suffer from XMRV (who have been inappropriately branded as having a fatiguing illness called “CFS”) are undeserving of the same medical care afforded others infected with a retrovirus?

I believe this is not time to end the CFSAC but rather a time for the CFSAC to exhibit its commitment by sending its strongest recommendations to the Secretary of Health and following those recommendations with actions:

·      Educate the research and medical communities about the number of individuals impacted and the severity of this disease.  Recommend that the CDC define ME by the immunological and neurological abnormalities that exist, the many co-infections that are frequently found and the physical complications of this long term illness.  It is time to agree on a proper name for this disease and to reflect the most current scientific knowledge in the definition of this disease.

·      Seek congressionally mandated research dollars that more closely match the number of individuals impacted by the disease and the severity of the illness.  Millions of Americans are ill with ME and yet the NIH allocates a mere $1.00 to $4.00 per year per person.  The loss in economic dollars is conservatively estimated to be $9 billion per year.  With that kind of economic loss to our society, why isn’t this disease funded at the level of hepatitis C which is currently at $93 million a year? Patients diagnosed with ME also suffer from inflammatory bowel disease, cognitive impairment, fibromyalgia, anemia, gall bladder disease, chronic Lyme disease, sleep disorders, chronic pain, depression, hormonal dysregulation, frequent viral infections, heart disease, and cancer.  Yet these sick Americans are forced to seek unproven medical treatments for symptomatic relief due to the lack of scientific understanding of the underlying immune deficiency that is driving this disease.

·      Request that research be conducted on XMRV in infectious disease by the NIAID and outside researchers to continue the valuable work begun at the WPI.  The human retro virus, XMRV, has been found by WPI researchers in diverse disease populations, including cancer, autism, fibromyalgia, gulf war illness and ME, in men, woman and children.   Yet four of WPI’s most recent grants were denied funding on the basis that not enough is known about XMRV to warrant further investigations. 

·      Create and fund Centers of Excellence in neuroimmune diseases to care for patients with complex disorders caused by infectious agents.  Scientific medical criteria should be developed that hold these Centers to standards of performance that include timelines and effectively measure demonstrated outcomes.  All such Centers should be interconnected to provide medical consistency in care.  They should include research, clinical care and medical education components from classroom lectures, to residencies and fellowships in neuroimmune disease.

·      Request a congressional hearing to determine why this disease has been so poorly managed by the CDC and NIH, in order to assure the American public that the failure to recognize a serious threat to the nation’s health will not be repeated.

There is no question that the CFSAC, as defined by its charter, can be an important avenue to a meaningful discourse between those who care about M.E. and those who are capable of initiating action from within the government.

The question is: Has the CFSAC achieved the goals stated in their charter?

The charter states its purpose …..as established to provide science-based advice and recommendations to the Secretary of Health and Human Services and the Assistant Secretary for Health on a broad range of issues and topics pertaining to chronic fatigue syndrome (CFS).

Is this goal being aggressively pursued?  Is scientific evidence being reported to the Secretary of Health?  What actions have been taken by the Secretary of Health that would provide evidence that this information is being acted upon?

The Function of the committee is stated below:

The Committee shall advise and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including: (1) the current state of knowledge and research about the epidemiology and risk factors relating to chronic fatigue syndrome, and identifying potential opportunities in these areas; (2) current and proposed diagnosis and treatment methods for chronic fatigue syndrome; and (3) development and implementation of programs to inform the public, health care professionals, and the biomedical, academic and research communities about chronic fatigue syndrome advances. 

The WPI took the earlier recommendations of this committee seriously.   In fact, we built our Institute on the premise that this disease and others very similar to it, deserves “Centers of Excellence” that can bring answers to patients and doctors, in the same manner as multiple sclerosis and muscular dystrophy have successfully done.  We believe that to find answers to this complex disease we must combine the translational efforts of basic and clinical researchers working in collaboration with knowledgeable physicians.  This is the dream of the WPI: to bring discovery to a disease which has impacted millions of lives, to develop effective treatments and to one day provide preventative measures that will stop the spread of the disease.

This is not something that we can afford to do alone.  If this committee will confirm that it is more than a sounding board for frustrated patients and doctors and that it can effectuate the necessary changes in this field, then the WPI fully supports the renewal of its charter.

Martin Luther King, Jr. once said, “The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy”.  I believe that courage is the combination of knowing the right thing to do and then doing it. Please show us you have the courage to make this happen.

Thank you for your time and attention.