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

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





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..

#63~ Dr.David Bell's Appeal- send $10 to WPI - ASAP

Dr. Bell makes a personal appeal to send funds to WPI to speed progress of research

David S. Bell MD, FAAP
Lyndonville, NY 14098

May 1, 2010

To my friends with ME/CFS,

I would like to put out a personal appeal for funds to be sent to the Whittemore-Peterson Institute (WPI) in order to speed up the progress of the current research. Here is my reading of a very complex situation.

Medical authorities, educational institutions, governmental agencies, and most practicing physicians have disrespected and minimized CFS in just about every way possible, from creating an insulting name for the illness to advising extreme caution in treatment, except cognitive behavioral treatments.

It is easy to dismiss my remarks to follow by saying that I am biased. And it is true, I am very biased and for twenty-five years I have quietly sat on the sidelines believing that science will win out and true progress will be made. I am beginning to think this has been a great mistake. The profession I love has failed miserably.

In 1985 an outbreak of CFS hit Lyndonville, NY, and affected 210 persons, 60 of whom were children. The official response from the CDC and the New York Health Department was that this was mass hysteria. No one talked with a single patient. In 1990 I worked with Dr. Elaine DeFreitas and Dr. Paul Cheney and a retrovirus was found and the material published(1). A second paper had been accepted by PNAS and contained a photograph of C-type retroviral particles from a tissue culture of spinal fluid of one of the children in the Lyndonville outbreak. This paper was suddenly pulled and not published after a couple of flawed negative papers. A complete description of these troubled times is in Osler'sWeb by Hilary Johnson. The funding for our studies was pulled and all work on this abruptly stopped.

I think the same tactics are being employed to hamper the current work on XMRV by the WPI. The WPI is a private organization and, as I understand it, no federal grants or funding has been forthcoming. There have been three negative PCR-only studies, which have established only that CFS cannot to be superficially studied. At this time no study that has attempted to replicate the WPI study has been heard from. Many CFS research organizations have declared publically that "XMRV is a dead issue."

Nothing is farther from the truth. I cannot predict the future, but my fear is that the current political and scientific organizations who do not want to see retroviral involvement will attempt to stifle studies on XMRV in CFS. Huge amounts of money are spent on studies on cognitive therapy, and studies proving that CFS is heterogeneous (you can argue that polio is heterogenous).

We have not heard from the CDC, other than the inappropriate comment that this was not likely to turn out to be anything, made right after the Science paper publication in October 2009. We are now eight months later and not a peep. Maybe they are finding XMRV and want to be very careful. Maybe they haven’t looked and are assuming that this heretical idea will blow away. Eight months? 
And the Band Played On.

It is possible that thirty other labs are finding XMRV in CFS or that no one else in the world is even looking for it. Science requires that labs do not disclose their findings prior to publication and I agree with this rule. But is the WPI going to be isolated by the scientific community and wither away because of lack of funding? Is XMRV going to become more of the compost of CFS research?

But there is an alternative. We cannot wait ten years for science to grind outs its conclusions. Every person in the world who believes that CFS is important should send $10 to the WPI. I plan to send $10 today. It may not be much, but it is a start. There may be 10 million persons in the world with CFS. Lets see, that’s…I need a calculator. May 12 is our day. Lets do this.

After 25 years of work in this field I do not have much. But I have my integrity. I feel that WPI has made an important discovery and I feel they are an ethical organization, they are not padding their pockets. But I also have my fears. And the greatest fear of all is that their discovery may not be appropriately followed up.

For the 9,999,999 other people out there who think CFS is both real and important, send $10 to: Whittemore Peterson Institute, 6600 N. Wingfield Parkway, Sparks, NV 89436.


Thank you.

David S. Bell MD, FAAP


1. DeFreitas E, Hilliard B, Cheney P, Bell D, Kiggundu E, Sankey D, et al. Retroviral sequences related to T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome. Proc Natl Acad Sci. 1991;88:2922-6.

#28~ a little new Paradigm history before the days of XMRV

For those that have NO understanding of
what ME/CFS is and want to gain a little
knowledge of some of the technical lingo
of what we deal with, and some of the
symptoms, and some of the theories....
I thought I would present for you some
of the info we have been working with
until now...Many of us have these
symptoms and YES as he says....
This disease IS Progressive...
REPEAT That Please....
This disease IS Progressive...
NO ONE seems to understand that yet.



Before we listen to the CFSAC meeting
in about  6 hours, and what Dr Peterson
has to say.. which I am most excited to hear....
It will still be "just a  part" of what we need
to work on to CURE us of all of these symptoms
and damage for those of us that have had
this for 20+ years...

Many of us that have NOT stayed Horizintal
as Dr Cheney advised, already have some
organ damage. Time will only tell HOW MANY
different forms of therapy/meds/treatments
we will need if we are to Actually be cured.

My gut tells me that with SO many viruses
of all kinds... average and retro attacking us
that we will need to kill some of them first
and then maybe follow up with some sort
of stem cell treatments to make things
"whole & well" again... Some Dr's are
"already" using this approach....
ALL of this, of course is "Experimental"
and won't be covered by ANY type of
Medical Coverage.. if you find one that
DOES, Please let us know ASAP, OK?

So until Friday, keep those computers
tuned in and turned ON to the CFSAC 
meeting so that our numbers can be 
counted.. OK?

If you don't think that we NEED our Voices
to be LOUD, United & HEARD, please read 
the lastest post by Cort (with addendum)
in
Bringing in the Heat:
1)  Teflon Woman
2)  The Alpha Dog

Thanks Cort for your ALWAYS Informative
and Educational posts...
I have him in the list to the Right -->

So stay CALM the next 2 days, take notes
and get ready to post & blog on Friday..

OH, last minute news...
Dr Judy Mikovits just spoke on Wed. 10/28
at the University of the Pacific (Stockton, CA)
*possible film soon*
and on Thurs she will be at the
University of Florida, so more news
will be coming from those locations
also I hope..

OK sleep hard & quick...
CFSAC starts in less than 6 hours..
Nite-all ;-)

#3 Bio - about me Cont'd

It is at the point where the Patients are NOW
educating the Dr's.. ta Heck with whether you even
HAVE "medical insurance" what good does it DO
if the Dr's have NO Idea what you have?
They look at you like
"IAIYH" aka "It's All In Your Head."

Turns out there was a Big Outbreak of this same
thing up near Lake Tahoe (Incline Village) in the
mid-1980's and the medical community "took notice"
and sent researchers from "Around the World".

Over the course of a few days they took "Histories"
from all of the patients and "en masse" they
DECLARED that what they HAD was called
ME=myalgic encephalomyelitis.

But then... since this WAS in the USA
the CDC finally showed up late, as usual,
and did their questioning and at the end of
their process declared that EVERYONE of the other
Medical Organizations WAS WRONG and they
decided to re-name this illness with a
"made-up name" that ONLY labeled it
"by ONE of the symptoms."

(sub-text: one belief is that since this was
occurring at about the same time as the
"new" discovery of AIDS, the CDC did not
want everyone panicking that there were
2 epidemics going on at the same time.)

HOW STUPID can you get? So now this
World Disease of which there are 28 million
called ME, in the USA is called
"Chronic Fatigue Syndrome" among a few
other similar names. That's like saying one of your
symptoms is chest pain so we'll call your illness
"Chest Pain Syndrome" but forget about the
Heart Attack you just hard and ignore all of the
things that caused it, and we will move like
"Molasses in Winter" in trying to do any Research
for it...and Hello it has been 25 years now since
this outbreak. Can you say 28million equals
an Epidemic?

There are NOW many Worldwide orgs. researching
for ME, but the CDC and USA are lagging WAY
behind, just like we have in the Research for
Stem Cells in the last 8 years.. where the rest of
the world has been doing stem cell research for the
last 18 years.

There are ONLY 2 Dr's that were UP at
Incline Village that have continued to Follow this
illness and done their OWN Research..
Dr. Cheney & Dr Peterson.

Dr. Cheney has now just finished a year of
NEW Research and is finding that for
long standing cases the only thing that finally Helps
because of all the damage done to our
entire systems + organs over the 20+ years is
Stem Cell implants http://cheneyclinic.com
Due to the lack of Stem Cell Implant locations in
the USA and the FDA lack of support for them,
he is forced to take patients abroad for treatments.
How stupid is that CDC?
"Get Your Act Together" PLEASE.

Dr Peterson has partnered with a backer and has
formed the WPI = Whittmore Peterson Institute
http://wpinstitute.org on the campus of the
University of Reno, NV., "WPI 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.”

I give MUCH Praise and Thanks to these 2 Pioneering
Dr's that have the Conviction to Continue doing the
Research that the CDC is dragging their feet on..

So that's ONLY Part of my back-story..
I will add other articles and past & current attempts
on this blog of my Attempt to "StandUP2ME"

cuz Hello CDC ~
"CFS" is NOT what I or the rest of the 4 million
in the USA have. So because of the CDC"s definition
of this illness we have been described "out of having"
what we DO have , and cuz we don't live OUTside the
USA we can't get the Correct Diagnosis of ME,
so "we can NOT get" any other Dr's or Courts to
acknowledge "What we DO have" or
Help us in any way..Medically, Emotionally, Financially,
Supportive in-home Services, online training for Help
to get trained to even DO some job online from Home
so we can support ourselves, we & those that
"Have Families" are left to fend for ourselves..

It's REALLY Embarrassing that this Great Country
not only does NOT have any kind of
Universal Medical Coverage for ALL, but that they let
the CDC & FDA be pawns and NOT "work FOR the People"
of this country like they should Properly be doing..
to be continued as long as
I am Alive..

#2 a small, yet BIG "PR" Victory

As ONE of the Main challenges of this illness has been
not ONLY the ignorance and lack of attention that the
Federally Appointed Research Agency in the USA has
given the 4 million & growing patients with this illness,
but the “Public Awareness” of the Reality of the
Seriousness of this disease… EVER since the CDC gave
it their “made-up ONE symptom ONLY nickname” and
that name has brought additional pain of mental &
emotional abuse to it’s Sufferers as the the Medical
Community the Public had even nicknamed it
“the yuppie flu” and for years thought it was
“all in our heads.” So we have not ONLY been Seriously
ILL but have been Victimized by our own County &
Public. Even after ensuing years the CDC was found
using OUR Research money for other purposes, so
they were mandated to run a Publicity Blitz Campaign
notifying Dr’s & with public ads telling them that
CFS was a REAL &  a Serious illness…but, the year's
of damage had already been done and their PR was
too little too late, as their ads said to "go to a Dr
& get Diagnosed," BUT they had NOT done the
required Research or even Educated the Dr’s about it
therefore..we all say LOUDLY ——> Enough is Enough.

Thanks to the internet and the invention of laptops,
although we are bedridden we are now becoming an
Army of 28 million that ARE Speaking UP for
Ourselves (& our families/caregivers if we have them)
even tho many (not all) Live “literally” in the dark, and
can not tolerate very much sound or speak loudly..
So we have started some online campaigns and are
blogging and using Twitter and Facebook and any tool
we can find to Help Educate the Public and
Raise Awareness of this too-long ignored Serious
illness… ---> 28 million “Voices 4 a Cure”.

We don’t have any Michael J. Fox like Parkinson’s does
to speak UP for us.. The closest we have is
Laura Hillenbrand that wrote the book that
became the movie.. “Seabiscuit” about the race horse.
I also have heard that well known Buddhist monk,
Pema Chodron, also has this illness. I now know of
others and will list them on the Right.. Anyone that
“actually recovers” from some fatigue illness did
NOT have ME/CFS, they had something else…OK?
If you truly have ME/CFS you “learn” how
"to Live with it” then you DIE. period.

The ONLY thing that has been shown to Help the
TRUE ME/CFS is the work, so far, of Dr. Cheney.

There are a "handful" other Dr’s that have also been
doing research, and are treating other things they
believe are causes of ME/CFS whom I will name later.

So what’s our little/BIG PR victory you ask…. ???
For the last 5 years Oprah has had a Cardio-Thorastic
surgeon Dr. Mahmet Oz on her TV show..
He NOW has started his own TV daily show that
just went LIVE last week. He is a Very Smart
Compassionate human being.. One of the kind that
Lives by “the more you know the more you don’t know”
and is continually educating himself AND the public…
For That I RESPECT him Very much..
He does not hide his head and “play Ostrich” like the
rest of the medical community. He lives on the
cutting edge and is honestly trying to make a
difference helping to educate the public in a way
that the Majority of the medical community has
NOT done up to this point. Having worked in a
hospital for 17 years, and I also worked in Cardiology
for awhile, I can speak with a little knowledge.

To get to the point.. ever since we found out that
Dr Oz had a Twitter Account the online ME/CFS
patient army has been sending him Tweets to
Raise HIS Awareness of our Cause..
Many online medical forums/blogs do NOT even
to this day, after all of these 25 years, even list
ME or CFS in their list of diseases.
I checked the Dr Oz TV website and we “already”
have a category and I believe he has reached out
to the medical world with inquiries for input and is
getting replies from them that he is posting…
I checked yesterday and he had 3 replies, by last
night they had added a 4th one..

So KUDOS to the Online Twitter #MECFS Community
and to DrOz♥ for Helping to Raise Awareness♥ And
Thank You Dr Oz for listing us and doing some
research into this illness and giving us the space
on your website to help Inform the Public that
we are NOT just a yuppie flu but a serious illness,
that needs attention.

We will continue to educate Dr Oz and hope that he
will also continue sending out his inquiries to help
find answers for us.. as this disease eventually
effects our hearts and he is a Cardiologist I was
hoping this issue would catch his attention.
May our relationship GROW to the point that
“someday soon” he will possibly even have
a segment about ME/CFS on his actual TV show..
and may he Grow to Learn that TRUE CFS is Really
M.E., that Apples are Apples and Bring some Sanity
to this LONG Misunderstood illness, not only in the
world but especially in the USA. That is one of the
reason’s that my Twitter name is ME_CFS_unite..
Hoping to Raise that Awareness that they ARE the
same and to unite all of us that have been SO
Poorly Supported so we could at least
“feel supported” by each other around the world.
I Tweet almost daily with other ME/CFS/FM folks
from across the USA, Canada, the U.K., Denmark,
Belgium, New Zealand, and Australia.

Color me Happy for one day at least and can you
see me smiling in the dark?

Dr Oz ME/CFS page