#79~ CFSAC Letter Time~ "Crimes and Dimes"

Kathryn has given me permission to post her letter to this blog for your education......
**************************

   For printing and dissemination at CFSAC Oct. 12-14, 2010:

   Dear Committee Members, President Barack Obama, Sec. Kathleen
   Sebelius, DHHS, and Director Collins, NIH, and Senate HELP Committee

   CRIMES AND DIMES
 
   The NIH and CDC have willfully and criminally ignored their mandates and over 5,000 scientific studies of patients with CFS, which was originally M.E. (Myalgic Encephalomyelitis), which they intentionally mis-named in order to cover-up sporadic outbreaks of ME. This was done for at least two reasons:  First,  CFS/ME arose as HIV/AIDS was killing people and the CDC could not mentally manage a parallel infectious disease that the public would learn about and demand answers. The CDC had the mental problem, not us patients. 

Secondly, the CDC also knew how disabling ME could be, making more people eligible for medical care and disability benefits along with the burgeoning list of HIV/AIDS patients. Their disregard of our care must have been sanctioned by very powerful, higher echelon government agencies (NIH?, DHHS?); I don't believe they could have done this without it.

   These inhumane violations of our civil right to disability benefits, appropriate testing and treatment trials has meant 30 years of possibly criminal neglect of the American people. They have violated their own mandates to research and define CFS in a scientific and responsible manner.

   Now Reeves has been transferred...so what!? He is still publishing garbage based on his erroneous, misleading "Empirical Definition" on almost a weekly basis, and getting away with it. Who are the scientific, clinical peer-reviewers of the psychobabble he gets away with; what are their inherent interests in perpetuating the myths of child abuse, psychological problems and lack of neurological and immune system symptoms in this devastating disease?

    NIAID is setting up multi-centered clinical trials. The Question of NIH Director Collins assured patients at the recent XMRV conference of Sept. 8-9, 2010, that "we are on track. Things will happen." The QUESTION of the Day is: Based on WHAT DEFINITION? The CDC's depressed or wrongly diagnosed GA cohort, selected by random phone calls? 
The Canadian Consensus on ME/CFS? 
The 1994 Fukuda definition? 

Only one is acceptable: 

The Canadian Consensus.
 
   At the same meeting, Dr. Gottesman, Dep. Dir., Intra-Mural Research, NIH, said there will be more funding and more publications, explaining there was a "lack of concrete scientific, clinical and medical findings and published papers" .... does he SELECT OUT the 5,000 CFS publications, or is he just as ignorant as the CDC's scientists? Is he also blind or willfully ignorant? He was clueless out the patient's abhorrence of Strauss and Fauci's past actions towards us, so he obviously has never read Hilary Johnson's "Osler's Web", either. This brilliant history of the CFS criminal saga should be required reading for everyone from President Obama, to Secretary Sebelius, Director Collins,  Director Friedan (CDC) and whomever gets the new post as head of the CDC's CFS research
program, before any more damage is done to us.
 
   Gottesman did say that the "Alter/Lo publication will change everything for our illness." Maybe we could start by getting the dentists and psychiatrists now on the CFS research grants team replaced immediately.  
Dr. Peterson was at this meeting, and informed Dr. Gottesman that the major researchers of CFS are not getting funding. The patients in attendance there stated the research grants process for CFS is flawed and needed fixing.  There are four research teams that I know of that could be funded immediately: Dr. Nancy Klimas, Dr. Ila Singh, Dr. Paul Cheney and the Whittemore Peterson Institute. The PANDORA organization needs funding for the already approved New Jersey Center of Excellence. It's needs to be built at once, with clinical trials for treatment of the myriad diseases of th NeuroEndocrineImmune spectrum, including CFS, FM, GWI, Autism, atypical MS, among others. Then we need at least six or more, so patients don't have to kill themselves just getting to one for evaluation and treatments.
 
   DIMES have been spend on CFS, or should I say misspent? We demand the NIH release at least $100M over the next YEAR, to forward the research into the third Retrovirus found to infect mankind. XMRV/MLVs may not be the primary cause, but retroviruses have not been found to be benign and its association with CFS is no longer in doubt, no matter where it came from, no matter that not everyone positive for it is not
(yet) sick.
 
   The CDC has spent about $3 per patient per year on CFS. This is unconscionable for a disease far more prevalent than MS, for one, and just as disabling to certain patients as HIV in their last few months of life.
 
   The dimes need to be exchanged for dollars now...lots of them!
 
    The crimes against humanity must stop. Real science, real research, real clinical trials, and real treatments must begin. Start with the XMRV positive patients, and retest often those sick but testing negative. Just click on 
"Start"!  CLINICAL TRIALS NOW!
 
   Remove the CDC from all CFS related programs; they must be at the NIH's NAIAD division, immediately.
 
   Strong measures must be taken to protect the nation's blood supply; not questions eliciting whether a patient feels 'unwell' at the time.
 
   Let's trade CRIMES for TRUST
   Let's trade DIMES for DOLLARS
 
   Let's do it together. NOW IS THE TIME.
   From: We Three in One Home; All with CFS/ME
   Kathryn Stephens
   Mary L Arispe
   Kathy L. Lorentz
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Thank You Kathryn for sharing your letter with all of us..
I agree with Everything you state.. We all know it to be true..
If not now ~ WHEN ???
We have been ignored like my dead car battery...

Support Our Troops? Gee... WHOM do you think has been receiving

the MOST blood transfusions with this tainted blood and they have

been accused that their Gulf War Syndrome is "all in their heads."

Our Best and Brightest.. Now you know how WE feel.....

STOP the Progress of all of the immune illnesses and cancers

that these Retroviruses are allowing to invade our bodies..

CDC ~ Center for Disease Control... Poppycock...

More like "Can't Detect Crap" even after they were SENT +Positive

sample strains of XMRV ... 

You can't find a Peach Pit in an Orange... and That is EXACTLY

what the CDC has been doing by using the WRONG Definition 

all of these years we have been suffering.....

They did INDEED Purposely IGNORE all of the Evidence ever since

the beginning.. and this is INDEED a CRIME against Humanity !!!

If XMRV is SO harmless... maybe they would like to be injected with 

the tainted blood and then let's SEE if it's all in their Heads ??

If you would like your letter to be printed just let me know..
I am hoping this will HELP inform and educate the many that
are unable to watch the CFSAC meetings and yet KNOW what
they have been told by the TOO-LONG Suffering Patients..

#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.  
 

#51~ Nominate Annette Whittemore for CNN 2010 HERO

Welcome to Spring...my pretties...♥♥♥


OK, Now that we in the northern hemisphere are all getting cheerie 
cuz Spring is here, it's time to finish a project I started at the end of last year...
Back then I was ahead of myself...I guess. Who knew ?


Many of us for the last 25 or so years, many from all over the world have been
frustrated because in the USA the CDC has been either ignoring us 
or mis-naming our illness or using OUR research monies for OTHER projects...


the list goes on and on.. and in the UK they have their own list of abuses and insults by their 
Ministers of Health also and the psychos of the med world that have been given orders to 
corral us like they were part of the cast of "New Moon"...LOL


NO, we don't have the Yuppie Flu, or we are NOT just lazy and tired all the time, and 
YES we have TRIED "Every" blessed test, pill, supplement and therapy you have subjected us to....
well....NO MORE..     You are abusing us NO MORE...
GOT IT ???  We're DONE. We found some REAL Dr's & Scientists that CARE and Honor their Hippocratic Oath.

No, it is NOT "just Chronic" Epstein-Barr Virus, 

No, it is NONE of the many things you tried to pin on us.. 

We are NOT your little voodoo dolls to be pricked poked and

exercised and GET/CBT to the grave and until we are ready to SCREAM....

You have already killed enough of us.. made enough of us GO Crazy cuz of your YEARS of ignoring us, insulting us and abusing us....to the point of PTSD.
We became even afraid to come back and have an appt. with you....
THAT IS VERY Pathetic !!! and in fact, probably criminal....tbd later.

Years of making Families FIGHT in Court to Keep their children because YOU were too lazy to do the REAL research to find out what they REALLY had....Dr. Bell has it ALL documented.

You have given WAY too many of us PTSD from YEARS of unending abuse...

when we trusted you with our very LIVES... we even Paid YOU to help us..

Want a few examples to SEE We're NOT joking or exaggerating at all?  OK.
"NO problem"... we have videos and lists... 25 year's worth..... Here's one of each...



There has also been MANY online advocates that have worn themselves out
or been threatened with additional harassment to the point that the added stress made them stand down for their own health and there is one I would like to
Make sure they KNOW we miss them and I hope they see this video making the rounds... 
and thanks to the creator for speaking for us *Hugs*



One last page I would like to list is a memoriam page for all of those (that we KNOW of) that have passed on before us because of this TOO LONG Ignored 
illness...Here is a short list we have been able to compile from our beds
being the lazy people we are.... 

Thank You Andrea Martell for putting this BRC4ME site together.

Blue Ribbon 4ME Memorial Site

So FINALLY a New Millennium has arrived and YES even a New Decade and we even have NOW 
our VERY OWN Institute started because as the old movie Network said 
"I'm mad as HE**, and I'm NOT going to take it any more."

So this courageous woman and mother became Founder and President

of an Institute "devoted" to ignoring all of the nay-sayers ALL OVER THE WORLD,

and with a single-minded purpose established a non-profit organization in the USA called a 501C3 and teamed up with the University of Reno negotiating for some grants and room to get started using their lab years before "their building" was even started or a shovel turned.... and Voila ! 

We HAVE the


Whittemore-Peterson Institute for Neuro-Immune Disease<--Mouse OVER for WPI Link.

by jiggers.... someone I think that's really "got it" !!!! They UNDERSTAND ♥♥♥

And here is a little background history for those that haven't been with us here
for the last few years, a video, so you can meet the other participating partners

helping DO the Research and flip all the switches backstage like the Wizard of Oz.

PLEASE BE SURE TO WATCH BOTH PARTS OF THE VIDEO TO THE END...
and KEEP in Mind that this was "just 2 years ago" and NOW already
they have "accomplished Scientific HISTORY" published in Science magazine
regarding the 3rd HUMAN Retrovirus XMRV with a link to CFS ...
...and Seriously ... The Do NOT even HAVE their OWN LAB YET folks....think about it...seriously.. THAT takes Dedication !!!
They are still building it.. So this is cutting edge and they NEED
Research AND Building Fund Raising so they can provide EVERYTHING
you will HEAR in these 2 videos, OK? Thanks.....

Part #1~


Part #2~


Their website even says on their front page....
"NOT for the lazy buggers" BUT

“The Whittemore Peterson Institute for Neuro Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of both the immune system and the nervous system, often resulting in life long disease and disability.”

May they be Blessed by Every God by Every Name..... 

And especially the LADY, the Mother, the Woman that is it's Leader 
and Face to the World for us..... Annette Whittemore... 

OUR HERO for 28 million people worldwide.....

That IS.....SO Far..........more testing to determine actual totals

                         

 I started early at the end of last year and asked on Facebook who would like to 

Join me and Name her Mother of the YEAR for 2010 and the number of Facebook

members that joined in was amazing....

NOW I see there is this CNN 2010 HERO Contest and I said... well...

She OUR HERO...absolutely not even ONE question about THAT....

So Let's get cracking mates and get this BRAVE Lady that has stood UP

for ALL of us "Far AND Wide", has Campaigned in Washington DC for us.

Has spoken in front of the CFSAC meeting for us... If there is ANYTHING

she could/can do for us she would and WILL... make NO Bones about that....

So let's ALL Join together and FILL OUT Those CNN 2010 HERO Forms and 

Help get her OFFICIALLY  Named the 2010 HERO, OK?

Remember it's NOT just for us, but for the Millions that have already gone on
ahead of us, and those that will come after us... we MUST DO OUR PART
as she has done her's... to also Help Bring more Publicity to our illness
and Research monies via the PR to WPI to help our cause....





HELP ME Nominate her for CNN 2010 Person of the Year !!! by using this link:
http://www.cnn.com/SPECIALS/cnn.heroes/nom/

For this contest PLEASE use the WPI contact info for her address and phone and email, as she IS the President there, they can contact her thru the Admin offices there...OK?


If needed her Birthday is April 26, 1952.
For the forms: contact info....

Annette Whittemore
Whittemore Peterson Institute
6600 N Wingfield Pkwy
Sparks, NV 89436
(775) 348-2335
email: info@wpinstitute.org


Annette's Pres. message from
WPI :http://www.wpinstitute.org/about/about_presmsg.html

I think the rest of you KNOW how to express how what she has done and how it has changed our lives this year 'so far' after waiting 25 years for the CDC

or "someone" to do SomeTHING... we...can NOW with this little thing to try in some small way to THANK Her..

For the FIRST TIME after ALL of these years.. HER WORK has not only given us a medical reason to undertand WHY SO many of us have different symptoms YET "just how" they ALL fit together and WHY. 

NOW we can see HOW BIG our Family of sufferers REALLY is....

There is even some PROOF that XMRV is also a source of Gulf War Syndrome.. So the soldiers have fought for the country, and then come home and "Join US" and fight this INSULT, especially in the way the Medical Profession.... EVEN those at the Veteran's Admin. has been mistreating the military that already given above and beyond.... 

Annette is as BRAVE and any Soldier... She IS OUR Hero !!!

She WILL Fight THIS WAR.... until this WAR is WON...and you KNOW there is NO Question about THAT... no reason to even question it.

Can you at least Help our Cause by Nominating her for this 

Worldwide Honor and THIS is a Worldwide Illness ???

YOU know she is deserving and has been ALREADY Fighting right there

in the trenches along with us.. in fact, she was OUT THERE when we were stuck in bed...and couldn't get out into the trenches.. 

Bless you and "Thank YOU" for Helping us Nominate

such a Loving Worthy Humble Deserving Lady and Mother to US all....

We all LOVE you Annette and everyone at WPI......♥♥♥♥♥  
You have "Inspired US" and Given us back our HOPE 
that was LOST and forgotten for SO many years!!