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Wednesday, November 11, 2009

#36~ Today- Cleveland Researchers Mtg re:XMRV

Send all of your Positive energies today
to Cleveland for the researchers working
and brainstorming on XMRV, OK?

Here are two articles covering today's

Cleveland Clinic on trial of XMRV

also another post from NPR
about the same issue:

NPR: Tues check-up XMRV

It will be interesting to see how of this
sorts out... I have been trying to figure
out how I and others could have contracted
XMRV and we have been discussing it..
As most of us know our "Triggering Event"
which is like saying we know when we
switched from HIV to AIDS, but when in
the heck did we get XMRV?

I was not breast-fed, I have never received
blood, and my mom and I BOTH always
have had 2 speeds.. Dead STOP and
"full speed ahead." My mom died of a
Lymphoma. I wonder if she had XMRV
many years before I was born?

That makes me wonder exactly HOW
many carriers there ARE actually?
Maybe most of our parents have
passed it on to us and that is why
we now have ME/CFS/FM/MCS/Lupus/Autism
..just a thought...that makes me go  Hummm.

Thanks to a FB Advocate for
creating a Letter for UK & others to use...
Just either use Google Translate
and send to your local Med. Authorities
or whom you feel needs to receive it.

Letter below: She has given permission
for any of you that feel so moved to
adapt it to your needs and USE it...OK?

Implications to the UK of new human
gammaretrovirus XMRV

You may be aware that a group of
researchers in the US (from the Whittemore
Peterson Institute, the University of Nevada,
the National Institute of Cancer and
the Cleveland Clinic) have identified a new
link to ME/CFS of a human gammaretrovirus
called xenotropic murine leukaemia
virus-like virus (XMRV).

This retrovirus has been identified in
over 95% of tissue samples from 101
sufferers of myalgic encephalomyelitis
(ME – or CFS or CFIDS as it is known in the US)
and 3.7% of 218 non-sufferers. This could
mean that, in addition to the estimated
250k ME sufferers in the UK, there could be
more than 2 million carriers who
"do not know" that they have the retrovirus,
and can be passing it on to others,

let alone into the Nations' blood supply.
Note that XMRV has also been implicated
in up to 25% of prostate cancer cases,
in fibromyalgia and also in autism,
atypical MS, and other illnesses.

In the same way that HIV can give rise
to AIDS, XMRV is now being said to give rise
to X-and: x-associated neuroimmune disease.
Hopefully, this will replace the multiple and
confusing terms ME, CFS, CFIDS, etc.,
once and for all.

Both the Whittemore Peterson Institute
in the US and Dr Jonathon Kerr in the UK
(who have researched gene expression
mutations in ME) have been awarded jointly
a $1.6m grant to research these
findings further.

In the light of these remarkable findings,
I wish to know the following.

1. Whether the government is prepared
to make ME a "notifiable illness" for the
purposes of protecting blood supplies
in this country. I note that both
The ME Association and Invest in ME have
written to the CMO, Sir Liam Donaldson,
on this point.

2. What plans the government has to
replicate and validate these findings.

3. What plans the government has to
provide funding for biomedical research
into the causes, transmission and treatment
of ME and other XMRV related illnesses.

4. What plans the government has for
testing for XMRV via the NHS and for
supporting those who are positive, specifically
in terms of medical treatment and
symptom management.

5. What plans the government has to
educate the UK medical profession and other
relevant departments and agencies
(e.g. the Department for Work and Pensions)
about the retrovirus and associated illnesses,
as well as other affected parties
(such as insurance companies) and
the public at large.

I note that there WAS a meeting of the
US Chronic ~Fatigue Syndrome Advisory
Committee at the National Institutes of Health
in Washington DC on Thursday 29th and
Friday 30th October and hope that the UK
government will be aware of its findings
and recommendations in this context.

Yours sincerely,

INsert your countries health agencies here:

U.K.~Search for your local MP here -

Labour party - Secretary of State for Health
- Andy Burnham -

Conservative party shadow health minister
- Andrew Lansley -

Liberal Democrat shadow health minister -
Norman Lamb -
(also has a Facebook page)

1 comment:

  1. My mom died of a Lymphoma too, Hodgkins. I have had CFS since 1990. Am really waiting to see if there's a link between her illness and mine.

    Sorry about your mom. And thanks for compiling all this info for us. My brain couldn't do it any more.