XMRV -testimony to US FDA’s Blood Products Advisory Committee

[Guest guest]

http://bit.ly/dU4ehJ

CFS UNTIED

Adventures in Illness and Politics

The third known human retrovirus, XMRV, seems to

be emerging as a player in many illnesses. A link

has already been made to a certain type of prostate

cancer. In a recent study [http://bit.ly/hmKDo6], Dr.

Ila Singh documented that XMRV has a strong link to

human cancer, and may be associated with cervical

cancer, lymphomas, leukemia, and breast cancer.

And of course, the WPI has made the link to ME/CFS.

There have also been reports that XMRV is

potentially linked to Autism.

According to this article [http://huff.to/eFcsLf] in the

Huffington Post, Dr. Judy Mikovits stated the

following:

" On that note, if I might speculate a little bit, " she

said, " This might even explain why vaccines would

lead to autism in some children, because these

viruses live and divide and grow in lymphocytes —

the immune response cells, the B and the T cells.

So when you give a vaccine, you send your B and T

cells in your immune system into overdrive. That's

its job. Well, if you are harboring one virus, and you

replicate it a whole bunch, you've now broken the

balance between the immune response and the

virus.

So you have had the underlying virus, and then

amplified it with that vaccine, and then set off the

disease, such that your immune system could no

longer control other infections, and created an

immune deficiency. "

Recently, part of the Autism community

has reached out to the ME/CFS community

and asked that we join forces

[http://on.fb.me/hvB8rF] and work

together to develop public awareness of

XMRV in the blood supply. Their message

is as follows:

There is a newly discovered retrovirus called XMRV

getting a lot of attention from the NIH and CDC. It

is frighteningly similar in nature to the HIV

retrovirus. XMRV was first discovered in patients

who had prostate cancer and now has been found in

people suffering from chronic fatigue syndrome

(CFS).

XMRV is currently shown to be a possible

cause/factor in the development of the following

diseases: Prostate Cancer, CFS, Autism,

Fibromyalgia, MS, and certain lymphomas and

leukemias.

In October of 2009 a paper was published by the

Whittemore Institute (WPI) that showed

85% of the patients with Chronic Fatigue Syndrome

had this retrovirus in their blood. This number

becomes even more significant if you contrast it with

the fact that XMRV was found in only 4% of the

general population and control group.

Recently, a soon to be published abstract of a small

study from WPI showed that 82% of children with

Autism tested positive for XMRV. This discovery

could provide new treatment options for people

suffering from these diseases and possibly many

others.

But the even bigger story is: Is our Blood Supply

being Tainted by the newly Discovered Retrovirus

XMRV?

No one is talking about how this could taint our

blood bank supply. Most of Europe, Canada, New

Zealand, and I believe, Japan has formally stopped

all CSF patients from donating blood.

However, our country is awaiting the results from a

new study being done by the NIH to determine if our

blood supply could be tainted by people who have

XMRV. Is this wait and see attitude putting our

citizens in danger of getting XMRV?

You probably haven't heard about XMRV yet. You

would think that several countries banning a group

from blood donation would be news worthy.

Or that the third known infectious human retrovirus

found in American blood donors might cause some

concern and a few more headlines.

Shouldn't the public be more aware there is a known

retrovirus in the blood supply, and that it is linked to

many diseases?

If you decide to do a story on XMRV here

are some possible contacts for you:

Amy Riley: Media contact for the Whittemore

Institute for Neuro Immune Disease

amy.riley@...

Kathy on: Director at the Northern New

York Autism Clinic

autismclinic2@...

Hankinson: Her child was in the initial

study by the Whittemore group

concerning XMRV and autism. She is very

knowledgeable and great source for you.

jlhank80@...

On Tuesday, December 14, the FDA Blood Products

Advisory Committee will be holding a meeting

[http://bit.ly/hAJmsp] to discuss the potential

dangers of Murine Leukemia Viruses (MLVs) in the

blood supply. The public is invited to participate.

Public Participation Information

Interested persons may present data, information,

or views, orally or in writing, on issues pending

before the committee.

* Written submissions may be made to the

contact person on or before December 7, 2010

* Oral presentations from the public will be

scheduled between approximately 10:15 a.m. and 11

a.m. and between 3:45 p.m. and 4:15 p.m. on

December 14, 2010, and between approximately

11:30 a.m. and 12 noon on December 15, 2010.

Those individuals interested in making formal oral

presentations should notify the contact person and

submit a brief statement of the general nature of the

evidence or arguments they wish to present, the

names and addresses of proposed participants, and

an indication of the approximate time requested to

make their presentation on or before November 29,

2010.

Time allotted for each presentation may be limited.

If the number of registrants requesting to speak is

greater than can be reasonably accommodated during

the scheduled open public hearing session, FDA may

conduct a lottery to determine the speakers for the

scheduled open public hearing session. The contact

person will notify interested persons regarding their

request to speak by November 30, 2010.

Kassy Fatooh has already submitted her

testimony, and invites you to do the same:

What we are trying to prevent is nothing less

than a repeat of the tainted blood tragedies of the

early days of AIDS.

Please feel free to share this note far and wide. I'm

casting a wide net of tags to parents, communica-

tors, health care workers; networkers who I hope

will get the word out. This is serious as cancer and

then some.

I have just emailed the following as my public

testimony to the US FDA's Blood Products Advisory

Committee. Please, anyone who cares about their

own or anyone else's health, I would never wish on

an enemy (if I had one) the disease my children and

I have, so please act now to ask the BPAC to protect

US blood banks from MLV retrovirus contamination.

Write on or before Dec 7 to:

.Emery@...

and/or

pearline.muckelvene@...

Dear Mr. Emery and Ms. Muckelvene:

Please include the following as my public

testimony to the Blood Products Advisory Committee

of the FDA, at their upcoming meeting this month.

I would testify before you in person but I'm

unable to travel due to debilitating pain and

circulatory problems, as well as the financial

disabilities caused by three and a half years of

illness.

I would phone in my testimony but my ability to use

the telephone is also limited by frequent

overwhelming pain. My ability to communicate is

also unpredictable due to my frequent exhaustion

not only caused by the disease itself but

exacerbated by caring at all hours day and night for

my children who are also chronically ill.

So please accept my testimony by email. The need

to protect the US blood supply from MLVs is urgent.

My children are already sick. I'm asking you to act

now to protect your own children, and the nation's.

Imagine if the FDA had waited another decade, or

two, or three, to protect the blood supply from

retrovirus HIV. Why wait to protect our nation's

health from retrovirus XMRV and related MLVs?

The suspicion that a retrovirus might cause

neuroimmune disease has been current among the

top researchers for decades. Today, these

newly-discovered retroviruses have already been

strongly linked to prostate cancer and Myalgic

Encephalomyelitis (ME, also known in the US as

" Chronic Fatigue Syndrome " ).

Further studies reinforce those links and demonstrate

links to others: to breast cancer and other cancers,

for example.

Other nations have already acted to protect their

populace from the spread of these diseases by

contaminated transfusions and other blood products.

It is for example Canada's policy to act when there

is a reasonable suspicion of danger. But the US

chose thus far to only issue weak and ineffective

recommendations, because retroviral causality for

the diseases had not yet been indisputably proven.

The connection is strong, the implication of these

viruses in fatal and debilitating diseases grows ever

stronger, and all that is protected by delay is the

profit margin of a few companies dealing in blood

products. What else can possibly stay your action?

Not caution: caution acts to protect. Placing profits

above people is not an accusation anyone would

want to face of course so please use all of your

power and influence in this meeting of December

14th 2010 and beyond, to insure that blood

donations are properly screened and blood products

are kept free of XMRV.

My children and I will be having a sparse holiday

season as you go home to whatever celebrations

await you.

I don't know if you have ever known for even one

season the anguish of physical inability to provide

for your family, no matter how great your desire to

do so.

I don't know if you have endured the heartache of

seeing one's child lose the entire teen years and

hopes for an active and productive adult life.

I don't know if you have had to cope with seeing

that child wracked with pain and unable to sleep

again from the torment, night after night, while you

have no effective treatment to offer, no honest hope

to hold out.

Please bear in mind as you look on the faces of

family and friends in this holiday season, that ME

and other MLV-related diseases can destroy ANY life.

As you meet in committee to make the decisions

that will effect us all, please act as you would if you

were acting to protect your own beloved

child—because you are.

There is every need to proceed as swiftly as

possible, to provide every caution available. That is

what I ask you to do today. Proceed with caution:

the caution that protects, not the false caution that

foolishly hangs back and fails to act.