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Dec.2014 LauraHillenbrand FaceTheNation
ME+Unbroken Interview HERE -

Dec 2014 ~ "NIH"P2P4ME"

NIH="InsufficientResearch"=DUH !
Treatment= more"SELF Management"
DraftReport HERE
Nov.2014- "Plague"-Published !!
VOA-PodcastAudioInterview HERE
Amazon USA Link HERE

Sunday, March 27, 2011

#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.

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.
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:

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~

 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.


Friday, March 18, 2011

#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.


Friday, March 11, 2011

#106~ Beyond "Coffee-Talk" Time

"Brave are simply those with the clearest vision before them and not withstanding the  obstacles go FORWARD in the direct of their goal."

I have read numerous posts, comments, and now blogs that have disturbed me lately, yet a few had a grain of inspiration in them. I would like to cover a few topics in this post that have been brought up recently.

In the USA, the DHHS, NIH, CDC, and FDA have let us down as citizens for the past 25 years. ENOUGH is ENOUGH.
Let us take a lesson from the cyber generation that has emboldened the youth of the world that DEMANDED "Respect AND Accountability" from their Governments OR those NOT willing to be accountable MUST GO. PERIOD.

After watching the events in the Middle East during the last few weeks, it makes me even more committed to us working as a group of united individuals as strongly and constantly and persistently as we can, but to also stay non-violent in our verbage. I feel like we are also Egyptians/Libiyans that have been held in prison for 25+ years and are fighting against a dictator that rules our lives....

The Middle East is now venting 40 years of pent up emotions on many levels in many different areas of their Governments and they ARE getting results.. How many years have you had bottled up ? Do you NOT think that "Holding IN that Anger" has not hurt your health ? It is NOW Time to go "Beyond Coffee-Talk" and make sure our government agencies and individuals HEAR US LOUD AND CLEAR. But PLEASE ~ Speak from your Heart, let them know you are NOT going to take it any more, that they ARE and WILL be Held Accountable and do NOT Threaten anyone, whatever you do, OK ? Keep a copy of every thing you send so you have PROOF that you were NOT being threatening and were ONLY speaking from your heart. The Cancer INSIDE our Very own Health Agencies MUST STOP !!!

 The Republicans want to save $100 Billion dollars, OK< just our ONE illness (ME/CFS) not even accounting for the costs of how XMRV is in reality undermining our immune systems and thus laying us OPEN and Vulnerable to MANY Diseases and Cancers, just like a house built on sand> like in Haiti does NOT Stand, We DEMAND our Government that has effectively DENIED us "Equal Health Representation" for the last 25 years NOW and IMMEDIATELY "WAKE UP" and acknowledge that their sleeping at the wheel has not only cost us 20+ years of our tax-paying lives, but is also NOW at this time costing OUR Economy $20 Billion a YEAR and "It is Now Time" for them to Validate this Pandemic and Stand UP to this and the other diseases in our complex and HELP US "RECLAIM OUR LIVES" so we can NOT ONLY "Have our Lives Back, but also become tax paying citizens again which will help the economy, Period." Their lack of accountability (please do NOT forget that Pres. Obama was the FIRST to add the cost of the 2 Bush wars INTO the Budget, previously they were NOT added.) Talk about previous lack of Transparent Accounting ???  If they had been Encouraging Proper Research on MANY Levels not just psychological  we would be reaping the benefits of that research NOW instead of being further in the hole. Their FAILURE to do so is COSTING not only our lives but our economy.

I have always Voted for the issues and the person, NOT by any party... What is going on NOW is making me even more  Happy that I have had this mindset, because NO one Party or even Patient Org. has ALL of the Answers.. We must BE "Informed Citizens AND Informed Patients" if we expect to STAND UP for OUR Rights on ALL Levels and Hold ALL of them Accountable. So that is why I feel I have the Right to mention any party or org in my blog because I will take the Best ideas of all and I will reject the bad Ideas from all... That is part of critical thinking.. Do not accept anything ANY Group says as Gospel and ingest it like pablum. Question EACH item and research it or as one of my grade school teachers once told me, " You do NOT need to know all of the answers and are not stupid because you do not know all of them, BUT, be sure to at least KNOW where to go to get them." THAT is the Strength AND Beauty of all of us Patients and Patient Advocates because we CAN help educate and Inform each other so that we CAN Speak with an Informed VOICE and Speak in LARGE Numbers..  WHO says AARP is the ONLY Loud Voice  to be Heard in Wash. DC. We CAN be the same way if we mobilize our laptops and computers and our networks amongst us....  

I also have been questioning why there is not a SEP or place where XMRV grants can be submitted to for approval. ME/CFS or whatever name you want to use aside, isn't XMRV already  linked with prostate cancer and lymphomas also, with suggestions of a 25% link to Breast Cancer and a much larger link to Lyme ? Why is there not a place to study this new retrovirus ? Since there are so many of us are testing positive for it, maybe this should be one of the issues we jump on to and campaign about. just a thought..

All I know is that we MUST start getting more focused and pick out targets and then act up in as many legal ways as we can, and I know there are many ways we can do this. We just need to make sure that no one flies off the handle and starts using violent threatening verbage. They seem all too willing to throw the baby out with the bath water.

"Why Movements FAIL"
A dozen people complaining with a dozen people defending is not a “movement in a world wide forum." Perhaps ME/CFS has struggled because we are not as united as a community as we would like to think. Perhaps our elitist attitudes, our groupings, our unwillingness to co-operate and work together for the greater good keeps us from embracing “community.” If we are not willing to get the information out there, to work together, to involve everyone …. then factions who decide to play with us and destroy our hard work and thumb their noses at the reporting process succeed not because ME/CFS is such a failure … but because WE are. (1)

*YOU are as STRONG as YOUR WILL to be Heard.*

The DHHS, the NIH, the CDC and the FDA have been charged with caring and guarding the Health of the  People of the USA and Preventing illnesses. 

They ARE NOT doing that. They are and have been part of a GRAND Cover-up that includes inept sloppy redefining our illness so it does not even resemble our original illness, but also sloppy research that is trying to undermine now the 3rd Human Retrovirus that IS in ACTUALITY "In the USA Blood Supply. Period

Speaker of the House of Rep. Boehner claimed on 'Meet the Press', Sunday Feb 13th, 2011, that "he wants to hold his members to the HIGHEST STANDARD."
I respectfully say, Bull Poop, unless he ALSO acknowledges that he is PART of the Government NOW that is he is actually effectively NOT Representing the MILLIONS and their Families that have "Fallen Thru the Cracks" of this ineffective penny-wise and pound FOOLISH attitude to Health + Disease Research. Unless he is part of the Solution , He is INDEED PART of the Problem.
Trust me, if one of his family members had Cardiac Dystolic Dysfunction caused by ME, which was an opportunistic infection that they have because they were XMRV+ the Research would be ON THE SCHEDULE

Egypt went thru 30 years of being ignored by a Dictator with a Police State. We, those with Chronic Fatigue Syndrome (Known in the REST of the WORLD as Myalgic Encephalomyelitis), or Lyme, Atypical MS, Prostate Cancer, Lymphoma, HHSV-6, HHSV-7, Cytomeglovirus, have also tested Positive for many other tests, when our Dr's and coverage would even run the tests, such as abnormal Holter Monitor , VO2 MAX, Thyroiditis, EBV, Low Natural Killer Cell Function, Abnormal SPECT Scans, and NOW to make matter WORSE ~ MANY of us are testing POSITIVE for the 3rd Human Retrovirus called XMRV. (2)

There is no HISTORY of our disease besides CFS, that CDC or NIH has "EVER" been recognized.  You can find a sentence stuck in here or there about M.E., but the SCIENTISTS and policymakers don't believe in it.  Except, of course, for psychobabble.  It's not just XMRV.                       We can't even get funding for HHV-6 either.


If you were Appalled at CROI Conference as Many of us were the please Help us and Demand "CROI-AIDS 2.0" aka for XMRV.
Do you REALLY think there is a Legit reason for them ignoring the 3rd Human Retrovirus, when the scientists are SO Scared that they are testing themselves for it ? Seems to me someone is working "awfully HARD" to cover up something here...

Conference Mission
"The mission of CROI is to provide a forum for basic scientists and clinicians to present, discuss, and critique their investigations into the biology and epidemiology of human retroviruses and the diseases they produce with the ultimate goal of translating laboratory and clinical research into progress against the AIDS epidemic. "

Dr. Jamie has already explained HOW all of this most likely happened...
The cat is clawing its way OUT of the Bag...
It's TIME for the NIH to "Get REAL" about this Retrovirus and Take it SERIOUSLY~
The CDC + UK MRC have a LOT to be worried about NOW...

XMRV and Family will NOT QUIT and Neither will WE or WPI.

The NIH State of Knowledge Conference meeting in April will show the colors of the NIH and then we will know where to expend our energies at that point. Here is the supposed agenda.
State of Knowledge Agenda
How it pans out will let us know where we stand. 

Please do NOT Wait to start your Letters for the CFSAC..
Please start gathering your thoughts NOW, because by the time the SoK is finished we will either be Very Happy OR Very Angry... Either way we ill have, I promise you, expended a lot of adrenaline and energy and many will crash. The due dates for our CFSAC Letters will be published about the same time and if we are crashed we will NOT be able to think clearly.. so Start NOW, so you can already have MOST of your thoughts ON paper/computer and then they will just need last minute tweaking before you sent them in "in time." OK ?

For our one disease alone, that the government is ignoring and underfunding research, the numbers are getting staggering. In effect, we ARE Indeed the New form of "AIDS 2.0" patients ONLY we are in that phase where our Government HAS NOT BEEN WILLING to do the REAL "Quality-ERROR FREE Research" and collaborate with the Researchers that HAVE Excelled in this Research, such as not only their very own branches of the National Cancer Institute, NIH, FDA, and the Cleveland Clinic, and the private Whittemore Peterson Institute.

Many of us that had Wonderful lives before we were stuck down with these illnesses were living Happy lives, contributing to Society and many were Doctors and Teachers among other leaders and active honorable tax-paying citizens. Now not only have our LIves as we knew them been wiped out in heartbeat, but so have our careers and incomes and our abilities to pay taxes. HOWEVER, Try as they Might~ The days of ignoring us and trying to demean us and undermine our UNITY as MILLIONS of wronged citizens that have been FAILED by our country is coming to an end. We have WORTH. We DEMAND "Proper Representation."

Since the Governmental health Agencies have ignored all of the diseases that are showing up to have XMRV+ in common... will YOU or ANY Scientist PLEASE Tell me what other discovered Retroviruses have been shown to Cause HEALTH ? This is flatly absurd. The list of associated diseases is growing weekly.. as more studies are being done.. The diseases downline thru the familial family tree is growing exponentially. We now have people that are XMRV+ that have Prostate Cancer, ME/CFS, Lymphoma (from which my mother died), Autism, Atypical MS, Lyme Disease, and even Breast Cancer. How many more Diseases need to be linked and how many more bio-markers do we need to  have for this Government to STOP abusing our Civil Rights and to DO Their Transparent DUTY by Funding STUDIES for this 3rd Human Retrovirus ?  To date there are approximately 17 million ME/CFS patients worldwide and that is NOT by using the Reeves CFS definition. I can not even begin add up the numbers of citizens whose lives,  jobs and quality of life are being effected by the other diseases already linked to XMRV.

We WILL ACT UP in our own ways, our version torn from the pages of the ACT UP History lessons ESPECIALLY as we have been using our INSIDE VOICES > "UNTIL NOW" as we have playing "sweet and nice" for 25+ years and it is getting us NO WHERE~ Enough is Enough.  ENOUGH IS ENOUGH. The Governmental agencies by their lack of integrity has left us NO CHOICE but to not only Speak UP for ourselves, but also for the Public Health that they are now and have been endangering.. AND FOR OUR CHILDREN AND FUTURE GENERATIONS, just as the HIV/AIDS activists did for us.

The Congress is worried about the deficit. I am worried we will not be ALIVE to be worried OR Fix the deficit.

The USA and UK Governmental Health Agencies, and the other countries that look at these two to follow, are undermining the Health of the Millions of Americans and citizens worldwide, and we are literally talking about it being the 3rd generation of these illnesses that is now mutating and causing even more new illnesses that will cause more grief, family destruction and economic hardship to the  people and countries of the world.

It is TIME "Our Activism" GET SERIOUS ~
Gang of 25+ years> Take a fricken' lesson from the younger generation..
Younger generation>  the Long Time holders of History of these sins of the past "CAN be Valuable Resources to you," Please --> TEACH THEM "How to Tweet" and use the newer Social Media, if they do not know HOW. Teach them How to do an online Fax.

Hello to those younger that are relatively NEW to This Cause > The bedridden Gang of 25+ years are the experienced folks that KNOW the History, but YOU still have the strength to HELP "Save YOUR Futures." We can work together.. We NEED to UNITE and form a Real COMMUNITY. Get your Families and Friends that Care involved NOW. The Gang of 25+ can do the CFSAC "call-in" testimonies, and YOU the younger generation are the ones that MUST attend the meetings IN PERSON for us  and speak in Person, Hold the signs and wear the T-shirts. Stand UNITED Behind those that are speaking and REMAIN There.. As long as you are quiet and still, but SIMPLY within the camera view, you are not doing anything illegal and you have a Right to Show Support for those speaking for you. Learn from the Brave HIV/AIDS "ACT UP" generation and the citizens of Egypt that stood UP 'peacefully' to their 30 year Dictator with the Police and Military ready to END Their lives. How far do you think the CFSAC will go that far to Silence us ? 

We will form our OWN "Tea Party" for the lack of a better name, and we WILL FIND a Better Name, trust me.      Maybe the "XAND Tea Party" ~ taking suggestions.. Please....

I  hereby SUGGEST that WE Design a FLAG to represent our XAND Cause, (for lack of a better name~ suggestions PLEASE) since it is not only a female or male or straight or gay or adult or child, but a HUMAN PANDEMIC that I feel we NEED a Flag so they will KNOW us by our Flag.. and then any individual or .org that believes in our cause when they are speaking about our illness, not necessarily FOR any of us, but expressing THEIR opinion about OUR illness and ANY injustices that need to be addressed or during any XAND ACTUP Actions anyone may display this flag... So Let's UNITE Behind a FLAG that will represent ALL of us.. with ALL of our Invisible Diseases that OUR Government has ignored like they did HIV/AIDS for the First 5 years until they Started ACTing UP !! anybody Game ? I would be willing to work with anyone to help create a Flag that we could them printout, maybe a few can sew a BIG ONE, make banners, what ever we can think of.. Put it on stationery, on our Faxes and emails as jpgs, etc.. Let's CREATE our OWN BRAND that can be used Worldwide, OK ? So ideas from around the world will be accepted. I want this Flag to be as well known as the Rainbow Gay Pride Flag, OK ?  What can represent all ages, sexes and nationalities ??? Help me here Please..... I KNOW we have many Beautiful CREATIVE Brains out there... Some are good at letter writing and some are good at artistic things. Let's all work together to RAISE AWARENESS and use the Best of EVERY Person and .Org out there.. We will be dictated to by NO ONE, but we WILL UNITE to create the STRENGTH in NUMBERS as Individuals, across 3 generations around the world, that is needed to do things en masse "that will be required" to get this job done. If Not NOW, WHEN ?

I here by Put a Call OUT to all Tweeters and Facebook members to start making a List of All and Everyone to which we need to get our message. Whether they be a Political Person, a Celebrity that has Hollywood that has experienced the devastation of HIV/AIDS, or some PR folks, basically ANYONE in ANY walk of life that you feel could or may listen to anything we have to say~ even if we are just informing them.. Maybe along the way we might Find someone willing to Get some Extra PR that does not have a CAUSE yet to garner them more PR and we can find a WIN/WIN that would serve BOTH of us.. Then make a list of all the FB users that ALL of us need to Friend that are movers and shakers and Celebs that might need a CAUSE or that have sympathetic ear.. Every Celeb needs a Health CAUSE to get GOOD PR nowadays.. "it is the IN thing" ... Let US be the latest IN thing.. Help us CREATE a list. Then we can work on Tweet & Facebook Campaigns. Put all of your lists on an easy to create a blog and then send me the link in a comment here and then we can ALL disseminate the list for everyone to use.

I respectfully request everyone write a letter to the NIAID requesting "studies of XMRV+ patients"- NOW,
"NOT After" millions more have died and lives, families and economy are even in worse shape.
Here is a quote from their letter below:

"NIAID is soliciting input from the infectious diseases research community to help identify potential high priority research areas to be addressed by the NIAID Leadership Group for a Clinical Research Network on Infectious Diseases other than should address high priority research areas that are opportunities not presently addressed by NIAID’s infectious diseases clinical research portfolio and that would be accelerated by a multi-site clinical trials network. Currently, NIAID supports a wide variety of infectious diseases clinical research activities in areas other than HIV." These activities are described on the NIAID website at the following link:   ;                
a more detailed listing is available by request from DMID
(send email request to: )
Let's make the PROVE that they "support research in areas other than HIV and make them GET BUSY."

Topics they would like you to cover:
~high-priority research areas (e.g., pathogen, disease, syndrome) and rationale for their high priority
~examples of potential studies and intended populations within the research areas proposed.
Please mark responses with the above RFI identifier (NOT-AI-11-029) noted in the subject line.
Responses will be accepted through April 4, 2011. Please limit each response to two pages. " (3)
30 min talk by Dr. Eric Klein, & Robert Silverman MD. ~ Please watch and Listen (5)
*Eric Klein's speech in front of the president and secretary of state, regarding XMRV and prostate cancer. From Feb/March 2011, but a very compelling video, with many juicy quotes that can be used.
Snip-its from the above~
MORE XMRV evidence:  "Only the 3rd Authentic retrovirus to cause infections in Humans." endQuote !!
"Viruses cause Cancers and Neurodegenative Diseases."
"XMRV= It turns ON a cellular oncogene" to cause Cancers !
"It is a Genuine INfectious Agent"
"XMRV CAN be transmitted by blood or transfusions"
"The research can not YET prove that XMRV causes cancers, but the Research CERTAINLY Points to that direction."
WHY are ME/CFS and XMRV still so Under Funded ?
According to the National Institutes of Health, ME/CFS is down for $5-million in 2011, and FMS is getting $12-million. Compare that to multiple sclerosis (MS) -- $144-million. Even Tourette syndrome research is better funded than ME/CFS. (4)

I would like to suggest that EVERYONE start composing their letters for their CFSAC Testimony NOW including a HUGE section about the CDC and their history of not only the insulting naming of our illness which is NOT accurate, in which they have over the years continually changed it to fit their whims without even giving due consideration to the REAL symptoms of our illness but simply broadening it to include simple depression which the chronically ill have, but is MOST DEFINITELY "NOT" a Cause of our illness and is not the MAIN VALID symptom of it either.... and was NOT there as a symptom when the illness started. Additionally, besides the current on-going scientific and court validated P.E.M. research that has been taking place at the Pacific Fatigue Lab, which is part of the University of the Pacific in Stockton, California, and whose own Chris Snell, PhD. is the current Chair of the CFSAC, we NOW have an additional study that has come to this conclusion. This MUST be acknowledged and recognized.

"The experiments reported here show that 25 minutes of moderate exercise generates large and rapid increases in gene expression in leukocytes of CFS patients but not in control subjects. Increases in mRNA were found for genes that can detect increases in muscle produced metabolites (ASIC3, P2X4, P2X5), genes that are essential for SNS processes (adrenergic α-2A, β-1, and β-2, as well as COMT), and immune function genes (IL10, and TLR4). These findings confirm previous hypotheses suggesting that alterations in all parts of the HPA axis may mediate and sustain the symptoms of CFS and FMS. These gene alterations suggest a potential role for alterations of peripheral sensory signaling in the symptoms of CFS, as has been proposed for FMS. They also suggest that a blood test could be devised as an objective biomarker for sensory muscle fatigue and muscle pain in CFS." (Complete link below) (6)

The CDC has NO Factual Legitimate REASON for excluding P.E.M. as one of the Hallmark Symptoms for CFS ANYMORE and according to this latest study also includes FMS. It is TIME for them to hereby QUIT their FALSE psychobabble because here are NOW Legit studies that this HAS testable legit biomedical markers and this pain and P.E.M. is indeed NOT "all in our heads" BUT in theirs, and furthermore GET will NOT help eliminate any of these symptoms, so get them OFF the dang website and suggested treatments because they will actually are hereby PROVEN to actually HARM US. And CBT is absolutely different than regular pain counseling or counseling to deal with ANY chronic illness that could leave ANYONE with a chronic illness depressed, but OUR ILLNESS is NOT Depression. If anything has caused ANY of us to be Doctors and Governmental Agencies that have taken our taxes for the many years we did work. They KNOW the new UK PACE Trial results are as our UK friends would say is a "bunch of bullocks." Those of us after many years already have cardiomyopathy from the dyastolic dysfunction that has resulted in OI/POTS and Hello ~ that is HEART DAMAGE and Exercise and Lack of oxygen to our brain and heat WILL KILL US ~ PERIOD.

I  request that EVERYONE start making A LIST of companies that are advertising in ANY Online medical article in any publication ANYWHERE in the World that mis-speaks the TRUTH about our illness, will NOT correct the mis-naming of our illness, eg. like that ABC.go, the many UK articles, etc.. This MUST STOP, and their Advertisers MUST know that we will Boycott their product if they do NOT make the Publications they advertise in publish CORRECT Information. Editors are suppose to screen the info BEFORE these things are Published. Period. Let's gather the info: name of publication, date, incorrect info, make a screenshot of it, note the advertisers, and send them to me. We will in the meantime form a committee of folks that are good at letter writing and we can then start Petitions to these advertisers/publications with our request  for their INFO to be retracted and corrected or we WILL Boycott their products and blog Around the world about not only the publication but also the advertisers that pays this publication. Most of these companies are Worldwide now so we can maybe have letter writers to create and speak to the specifics in each country so we have our facts CORRECT, but the campaign and boycott will be worldwide, OK ? Ideas to clarify this "Mis-Information Campaign" and it's strategies are also VERY Welcomed and desired.

We have just had a week of some great inspiring articles published that should give you all plenty of enthusiasm to help 'kick start' your letters and get your juices flowing.. Please USE that Positive Energy to start working on some of these ideas and gathering information and making notes for writing your letters not only to the NIAID, but for the soon needed CFSAC letters, OK ?I only mention this so we can start now getting organized and start planning our next CFSAC campaign which IMHO should  be the CDC, since the CFSAC members want to target them this next meeting anyway. I know I need to start my testimony now, cuz after the SEP results and the NIH results, I will be so exhausted I will not be able to compose a cogent pointed argument for my CFSAC public comment.

Amy Dockser Marcus WSJ article

Leonard Jason's WSJ article 

David Tuller's NYT's article

I hope you also WATCHED the video about Dr Bell's, Lyndonville kids, that 70% of which have already tested Positive 25 years later now XMRV+. Please WATCH this basically 4th study that validates the Original Science findings.. 

The video may disappear in the next day or two so Please watch NOW> OK?
AND get everyone you know that has NOT YET seen it to watch, Family AND Friends, OK ?                                                                  

CFS + Lyme :  "spinal fluid" 


Hemispherx Biopharma Announces 9th Clinical Investigators Conference: Ampligen Clinical Trials Highlighted

Conference Explores Potential Relationships Between Chronic Fatigue Syndrome (CFS) and a Novel Retrovirus

article link in full below (7)


We are also gearing up for all of our Annual May 12th International Awareness Day Campaigns that will include MANY different activities on all levels, something for everyone from Tweeters, letter writers, on location demonstrators in the USA and UK capitols and others around the World. Please gather ALL of the ideas you can make note of from the Forums and Facebook and email them to me so I can post about them and you can then know about everything that everyone else is hearing about, OK ?  We want this one to be a BIG YEAR and we want them to HEAR Our OUTSIDE VOICES... 
Send your emails to <mecfs may awareness month at> OK ?           
I will gather them and keep you informed of everything I receive, OK ? 
We EACH will have our own little part to do "to pull off" this HUGE May 12th Awareness World wide EVENT, so let's Agree to AGREE to Help INFORM each other, OK ?  I will NOT "Judge" the Pros or Cons of any planned Action.. I will simply report them to you and you can choose which one/ones you want to participate in, OK ?

I would like to apologize for not blogging as much recently, but I have been reCouping from a really BAD Crash that also Flared EVERYTHING and it has taken me longer than usual to slowly regain some strength and any stamina. Sometimes trying to stay "on top" of everything ~ we that are 24+ yr XMRV+ ones tend to pay the price when we over-do our enthusiasm even when it is only from bed on a laptop.

Hope that you will ALL in the USA, except AZ +HI, remember to change you clocks this Sat. nite as Daylight Savings starts this weekend. Color me HAPPY. Maybe we can get outside and even just sit in the sun for 15 minutes a day and get some "natural" Vit. D that we all need SO much... Meanwhile, Please take care of yourselves and make notes when ever you feel a little moment of clear-headed Inspiration, OK ?

Happy Thought for the day: At least I don't have to fill my bed tank with gas/petrol at these prices~

Hugs and love + kindness to you all...

whether you are still buried in snow, helping your neighbors after a flood, fire, earthquake or volcano, we send you love and Positive thoughts everywhere

PS: Thought for the week~
"Brave are simply those with the clearest vision before them and not withstanding the  obstacles go FORWARD in the direct of their goal."

(1) "Why Movements Fail"

(2) Mary Schweitzer's Blog~"Slightly Alive" re: Civil Rights from Today ~ Please READ:

(3) NIAID Announcement Please READ:

(6) "Moderate exercise increases expression for sensory, adrenergic and immune genes in chronic fatigue syndrome patients, but not in normal subjects"

(4) Underfunding of Fibromyalgia & Chronic Fatigue Syndrome Research

(5) Dr. Klein's talk ~ Enjoy !

(7) Hemispherx Biopharma Announces 9th Clinical Investigators Conference


Wednesday, March 2, 2011

#105 ~ The Transforming Faces of the CAA

The Transforming Faces of the CFIDS Association of America

Posted on March 1, 2011

Guest blog: RePosted with Permission of the Author :
by John Herd

In the early years of the CFIDS Association of America (CAA) the organization was a dynamic organization, doing its best to represent and help patients.

As Kim McCleary became more entrenched in the CAA, taking over increasingly more control of it, their [her] advocacy still began to change. Instead of acting as a diplomatic advocate trying to make advocacy headway with government officials and agencies, her actions and statement about health department activities and/or lack there of were becoming increasingly anemic.

Effective diplomacy is one thing, but increasingly respected advocates and informed patients were talking about McCleary being “in bed with the health department.”

At the same time it was becoming increasingly evident that (A) McCleary was not willing to work collaboratively with other CFS organizations or advocates, (B) that the CAA was no longer interested in providing any kind of services to aid or assist patients, and (C) that the CAA’s actions were all about what was economically best for the CAA, in McCleary’s mind.

McCleary was consolidating her power within the CAA and in the governmental CFS arena. She made a point of selecting various CAA board members who would accept her views about matters and back her up. So too was she making sure she had an inside track to health department committees and officials while doing nothing to assist other advocates, activists or patient organizations with advocacy initiatives. She was not what one would call a team player, unless of course the team one is referring to is the health department.

A high level health department official when speaking to a group about a CFS advocacy said, “When (_____) speaks (this person) speaks for the patients; when Kim speaks she speaks for her organization.” That clearly defines what McClearly has been about.

Due to personal matters the founder of the CAA, Marc Iverson, had less of a hand in running the organization. Additionally, McCleary had consolidated so much power on the organization’s board that Marc found he had diminished influence upon getting the organization back on track. Marc had his ideas about CFS advocacy and helping patients, McCleary had hers, and the differences were vast.

I can not reveal the details because they were shared in confidence, but the internal wrangling within the CAA got very ugly. Marc eventually composed a resignation letter and left the organization.

In 2004 Jon Sterling, who had become the CAA’s Chairman of the Board and several other people resigned for similar reasons. What lead up to that event seemed like a tactical carbon copy of the playbook used against Marc Iverson. Again the conflicts came down to doing what would most effectively be representing and acting on behalf of the CFS community or following McCleary’s strategies for building CAA’s sphere of influence with the health department.

McCleary’s style of impotent advocacy was taking a profoundly negative toll on the organization’s membership roster and donations to the organization. The organization’s excuse for declining membership was that much of the information it had once furnished was now available on the Internet. That excuse was nonsense; people did not feel the organization was adequately representing them.

The CAA had never made enough money from membership funds to run the organization, and clearly not enough to fund the large salary McCleary wanted for herself. She desperately needed a revenue stream and the answer was health department contracts.

For those of us in the CFS advocacy trenches that immediately reeked of conflict of interest and we said so. Given the CAA’s economic dependence on those contracts the CAA was not about to bite the hand that fed them. The messages coming from the CAA increasingly sounded as if the health department had written them. The CAA had become the CDC’s puppet.

When it became clear to McCleary that the CDC contracts were ending she needed to find a new revenue stream. Since the contracts were ending anyway she made the tactical decision to distance herself and the CAA from CDC with a series of critical statements about the CDC. Such distancing was important for her next metamorphic transformation of the CAA, that of becoming an administrative medical research network.

The CAA brought on board Suzanne Vernon from the CDC to act as their Scientific Director.

Having read the CAA’s “Research Grants Program, Request for Applications” and the CAA’s “Research Grants: Guidelines, Guidelines for Conducting CFS Research Studies” it was evident that McCleary and Vernon were trying to make the CAA an administrative medical research network.

Cort Johnson, the most outspoken, ardent supporter of the CAA immediately was highly critical of me when I publicly pointed this out. He said there was no evidence to support my analysis of what the CAA was doing.

When one CFS advocate not long ago referred to the CAA as being an advocacy organization to an NIH official, she reportedly was immediately corrected by the official that the CAA is not an advocacy organization, they are a research organization. The official most likely would not have stated that if that were not the way the CAA were portraying themselves.

It would not surprise me at all to see the CAA eventually applying for government funding directly, and if need be changing their incorporation type in order to do so.

So here we are today. The CAA was not only luke warm at best about the Whittemore Peterson Institute’s (WPI) XMRV findings, they have reportedly been very aggressively speaking and acting behind the scenes to blackball WPI from meetings, government committees and grant funding. The only logical conclusion one can draw from this is that the CAA views WPI as a research competitor. For this advocate, I have far more faith in the WPI and the medical network they have been forming than in the CAA and whatever directions they wish to steer CFS research.

I do not feel the CAA is adequately representing the bests interests of the CFS community as an advocacy organization or a research organization. The vast majority of those I speak to do not want the CAA to convey that that they are representing us when they are not doing so. While a small number of people have been critical of our speaking out about this, claiming we need the CAA because they are the only national organization, my position is that having no organization is better than one that is doing harm. If the CAA went under that may clear the way for patients to get behind creating the kind of advocacy organization we need and getting the kind of support and funding the
WPI needs.

© John Herd, ’11
Original Article