Open Letter to Prof Simon Wessely -Without Apology

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Reference:

*Apolgies to Prof. Simon Wessely*
Help ME Circle, 7 January 2011
See Co-Cure: http://bit.ly/hwC4br
Or this blog: http://bit.ly/gz4FIA



~jvr




````






WITHOUT APOLOGY:
OPEN LETTER TO
PROFESSOR SIMON
WESSELY:




Gurli Bagnall




8 January, 2011



There I was, sitting in my motorized wheelchair
trying to control the pain that racks my body and all
but consumes it. To my amazement, I came across
Jan’s apology to you.


While the apology was no doubt triggered by
someone who is *well intentioned*, Jan is an
informed person and I suspect he takes comments
such as those raised – namely that you had once
again, been misjudged and maligned – with a pinch
of salt.


You appear of late, to have taken a back seat –
keeping a low profile and basically, WHEN we hear,
ALL we hear from you are denials and that
disingenuous: “Who? Me?”

In short, the manipulative behaviour with which we
have been “favoured’ for so many years, has come
home to roost. If you have one consistency, it is
your constant inconsistency. When it suits, you say
or do one thing; when it doesn’t suit, you deny
having said or done it.


You know very few of us, but most of us have known
you for years! You have ignored the scientific
findings and were sometimes foolish enough to deny
them outright.

Please do not deny that IN YOUR MIND your
opinions outrank science. Your actions speak for
themselves.

How can anyone believe a word you utter? You rely
entirely upon the equally foolish assumption that we
are all a bunch of idiots. That we can actually read
and operate a computer must have been a terrible
blow to you.


The crucial point for you now, is does anyone really
care any more about whether or not you have been
misjudged and maligned? Having been repeatedly
misjudged and maligned by you, why should they?


At this moment, my dearest wish after more than
two decades of hell, is that you were here beside me
in your own wheelchair; then you could show us
YOUR mettle – for what it is worth.


Would you bear your lot with courage and fortitude
as the rest of us have to do, or would you wail and
howl that you cannot stand the pain; that you do not
have the strength to cut up your own food and when
it is cut up, are you able to chew and swallow it?

Can you manage such things as the transfer from
chair to toilet on your own? Or...oh dear...were you
just a little too slow and now need to expend
strength on changing clothes? And how is the
breathing – a little tight perhaps? And those
arrhythmias...what a bloomin’ nuisance (and worse)
THEY are.


And if on the advice of someone like yourself, you
were incarcerated in a mental institution, I wonder if
anyone would bother to leap into the swimming pool
after throwing you in, to save you from drowning?

But then why should they? Didn’t little Ean Proctor
learn to swim by being thrown in at the deep end.
Yes....well... Hmm... That subject is taboo, isn’t it!



I’m sorry if I appear to be a little personal here, but
isn’t that what this is about? You are very personal
where sufferers are concerned.

And here is a puzzle for you – I’ve never been able to
figure it out. Why is it that my career and earning
capacity, (or anyone else’s, come to that) are of no
importance compared to yours?

According to you, I need to show I am sick so I can
gracefully retire and live a life of leisure on a
sickness benefit! (On a sickness benefit? Are you
joking?) Well, I’ll be darned! Here was I living under
the illusion that appreciation for your services to
things like the insurance industry, the MoD and oh...
You know them better than I do, showed their
appreciation by handing out a pen or two now and
then.

How could I have supposed they actually paid you
for it? Oh by the way, how was your caviar and
champagne last night? My water and boiled egg
were quite nice....thanks for asking.



Seriously, bullies and those who get their own way
through manipulative behaviour, are generally also
cowards.

I wonder how you will regard your brand of humanity
when you are on the receiving end as you are jeered
at? When your treatment package includes being
laughed at and ridiculed?



Having read Jan’s apology, a number of questions
have come to mind that I would like to put to you.
They are as follows:



* When can those who suffered as a result of your
untruths and general influence, expect an apology?

* When can the families of those who took their
own lives because you and your bleating followers
left them no other options, expect an apology?

* When can society expect an apology for false
claims of expertise?

* When can the children who were forcibly removed
from the parental home and protection to be
admitted to a mental ward and literally tortured by
staff due to your direct or indirect influence and/or
instructions, expect an apology?

* As a result, will those children and even adults,
ever be able to trust the medical profession again
throughout the course of their entire lives? When can
they expect an apology for being inflicted with a
lifetime of fear of those they are supposed to trust
with their very lives?

* Your profession in general, is in bad odour. It is
clear that major changes are needed to salvage
whatever credibility is left. You and your kind have
had a large part to play in this – you are the empty
drums that made the most noise. When can your
colleagues expect an apology from you for (a)
making utter fools of them and (b) for making the
lives of those who did their best to work within
ethical parameters, so difficult?

* A wise person once said that when everything
has been taken from you, there is nothing left to
lose. When can the multitudes you have stripped of
everything by your machinations, expect your
apology?



THESE ARE MY PERSONAL THOUGHTS AND
I HAVE NOTHING LEFT TO LOSE. YOU MAY
HAVE GATHERED THAT I FEEL VERY ANGRY
AT THIS TIME.





Gurli Bagnall
New Zealand








~~~~

XMRV+ve Patients & Retroviral Treatment

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Many thanks to Doctor Speedy from

THE NICEGUIDELINES BLOG

at: http://bit.ly/e8fuRn



~jvr




``


http://on.fb.me/igjcnK


XMRV positive patients
respond to retroviral treatment!!



by Jan Maverick


Fryday 7 January 2011




Xinnian a UK sufferer from Foggy Friends
has given permission for me to post the
following:



*....I also spoke to Dr Mikovits for quite some time
this evening regarding M.E patients that are currently
being treated for X.M.R.V.



Here's roughly what she had to say:


She knows of approx 20 human subjects tested
positive for X.M.R.V being treated with
anti-retrovirals and the results are astonishingly
positive:


4 Patients, some from bedbound state - Now well
and considering themselves FULLY recovered!


6 Patients 50% recovered - so far!


6-8 Patients 3-4 good days per week - so far!


2 Patients non-responsive (likely down to
complications with Lymes)




Dr Mikovits added that those recovering will just
need extra time on the treatment until fully
recovered.



This is good news for all of us and it has left me
trembling to think that one day, perhaps not in
distant future, that I might be well again....*


Amazing results and great news in my opinion, I
hope you all agree!



Jan x





N.B. Please note than none of these
patients are being treated by the WPI.








~~~~

Apologies to Prof. Simon Wessely

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Reference:

*ME/CFS -Familys Nightmarish Experience*

Help ME Circle, 3 January 2011


I posted the horrible story about the young boy Ryan
Baldwin, a severe ME/CFS patient.

*....Although he was declared medically disabled by
the Social Services Administration; the Buncombe
County Department of Social Services took custody
of Ryan, who spent 10 months in three separate
foster placements....*


See:


````````


Writing from memory I added the
following introduction to the article
above:


The story below reminds me of a UK Prof, who
created a terrible climate for ME patients all over
the world. (he also dictates the strategy of the CDC,
with the result (by formulating endless stretching
criteria), that the prevalence figures in the USA are
now the same as with the flawed Oxford standards.

(Because of brainfog the name of this UK Prof has
slipped me at the moment).


What I remember is, that he is a member
of the supervisory board of a company
named PRISMA.



This same company is being paid many millions of
pounds to supply *rehabilitation* programs (such as
CBT and GET) to the NHS for use on *CFS* patients.

He is also an officer of the insurance company
UNUM. Insurance companies save a huge amount
of money in payments if illnesses can be viewed as
mental and not physical.


Anyhow this Prof was involved in a case where a
severely ill, virtually paralysed young boy with
ME/CFS was subjected to horrific psychiatric
*treatment* including throwing him into a
swimming pool:


i.e swim or drown....

He couldn't swim......!




```````````````````


I received the following reply from reader XXXX:



Dear Jan,


I am sure you would want to be accurate otherwise
anyone publishing your posting will also be
publishing misinformation.


Wessely confirmed, earlier this year, that he was
not involved with the Board of PRISMA beyond
around 2001 and that he has not been an "officer
of UNUM".



Here is a copy of his clarification:



http://bit.ly/goQePD



Clarification from Prof Wessely
on interests in PRISMA Health


OK, someone I know asked SW about his
involvement with PRISMA and he responded, asking
that his entire email be posted without edit, if it is
posted. So, here it is:





From: Wessely, Simon
Subject: RE: PRISMA
Date: 25/04/2010 02:26 PM




My interactions with PRISMA already are a
matter of record.

But to answer your questions



*I understand that in 2001 you were still listed
in PRISMA Health literature as a member of the
company's Supervisory Board and that according
to the financial disclosure in a September 2001
paper in the Journal of the American Medical
Association, you served as an advisor for
treatment programs and research opportunities
for PRISMA*



Indeed so.

This is what happened. I had a brief
association with PRISMA when i was
invited to join their supervisory board
specifically because they were interested
in research. This is like being a non
executive director in an English company,
and is not a salaried role. I attended two
board meetings in germany, for which i
received expenses

After a while it became clear that they
were not really interested in research and
we went our separate ways. I can't
remember exactly when i formally resigned,
but it would be when I stopped reporting it
as a possible COI so around 2002 i guess


Since then I have had no contact with
PRISMA at all. In any shape or form. None.
Zero. Indeed, i don't even know if they are
still trading. At no time have I ever been a
share holder in PRISMA, indeed i have
never been a share holder in anything.

I do get a little fed up with this
obsession with me in general, and my links
with PRISMA in particular. The facts are
that my involvement with PRISMA was
brief, did not make me any money, was
declared appropriately at that time, ended
many years ago, and that since then I have
had absolutely no contact with them
whatsoever.

I have made this clear before, but of
course that is rarely gets circulated in
certain circles, so the rumours, innuendos
and slurs continue.


I hope this puts your mind at rest.


Kind regards

Simon Wessely




````````````````

Reader XXXX continued:



and from this post here:

http://bit.ly/ftykeD


Originally Posted by Holmsey


Simon, you made reference in an earlier mail
about others profiting from the XMRV research,
by the supply of testing etc. inferring in the
process that as an NHS employee your
motivations were above suspicion, but obviously,
as this isn't a personal attack, I'd like to here your
comments on this posting:


Wessely is a member of the supervisory board of a
company named PRISMA. This same company is
being paid many millions of pounds to supply
'rehabilitation' programs (such as CBT and GET) to
the NHS for use on 'CFS' patients (Mar 2004,
[Online]). Wessely is also an officer of UNUM (large
insurance company)."


UNUM is a huge disability insurer, and its policies
typically exclude disability coverage for functional
(psychiatric) illness. They have a vested interest in
seeing that CFS/ME stays solely in the realm of
psychiatry, and have bought SW on board as a
gatekeeper for CFS patients. This is conflict of
interest and bias of the highest order, since a finding
of an organic cause of CFS/ME is directly against his
financial interests. Same goes for his relationship to
PRISMA.



Any truth in any of it?



````````


The reply was:

Originally Posted by Holmsey


[Wessely's reply]



Was a non exec of prisma. (Ie unpaid) for
about 18 months cos they said they
wanted to do research. Resigned when it
was clear they weren't going to.
This was god knows when but perhaps 10
years ago. Never ever worked for Unum.
Done one perhaps 2 talks at unum
sponsored meetings. Not about cfs as far
as I recall




````````


So, he has clarified (in November 09 and April 10 this
year) that he was no longer a Board member of
PRISMA beyond around 2001 and that he was not
and is not an "officer" of UNUM.




XXXX




##########







Apolgies to Prof. Simon Wessely



Of course I want to be accurate in *Help ME Circle* -
Although this is not always possible, because in most
cases I'm just the *messenger*.


Because of a severe writing-aphasia (caused by
*ME*), it is a hell of a job for me to write such a
long introduction.


And now I had to immerse frantically in my chaotic
archives......




These are my (absolute correct) findings:



1. Wessley has said he has NOT been
involved with PRISMA for some years
(My PRISMA documents naming him as
a Corporate Officer date from 2001).

2. Although he has definitely spoken at
UNUM-sponsored conferences (and they
were definitely about ME/CFS), SW says he
does NOT act for them.

3. Wessely was NOT directly involved with
throwing Ean Proctor into the swimming
pool (although Wessely DID sign the
letter supporting taking the child into
care).






My well-intentioned apologies to Prof. Simon
Wessely for the flaws in my introduction to an
journal article about one of the victims of the
psychiatric *CFS*-School.




~jan van roijen






~~~~

XMRV and Macaque Monkeys

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http://bit.ly/fKUVxf


CFIDS Watch




Thursday, January 6, 2011




Macaque monkeys and XMRV



Possibly the most significant CFS-related research
since the Whittemore-Peterson Institute's XMRV
study was published last year by a group connected
with Emory University, Abbot Labs, and the
Cleveland Clinic.

In this study, rhesus macaque monkeys were
injected with XMRV, and then their blood and organs
were tested to track the progression of the infection.


After a few weeks, XMRV was almost totally gone
from the blood. But the infection had spread to many
of the organs, including the lungs, spleen, liver,
lymphatic system, bronchial passages, gut, and the
sex organs.


When the monkeys were later injected with a bolus
of foreign peptides (which mimics an acute
infection, an immunization, or an acute mold
exposure) there was a huge reactivation of infectious
XMRV.


Stress and certain hormones also appear to be
significant reactivators.


This study is totally consistent with my observations
of the progression of my own illness over the past 16
years.

It also sheds new light on several recent studies
which failed to find XMRV in the blood of patients
with XRMV.


I believe it should provide new impetus and direction
for future XMRV and CFS-related research.




````


* XMRV: Examination of Viral Kinetics, Tissue
Tropism, and Serological Markers of Infection -
The study abstract. [~jvr: see below:
http://bit.ly/eoIxX9]


* XMRV Infection in Primates - Dr. Paul Cheney's
detailed discussion of the study http://bit.ly/f3XhyR


* Monkey Business - Political cartoons commenting
on the study: http://bit.ly/hx1Y9Y


* More Monkeys - More politics: http://bit.ly/i03IaT




###########



http://bit.ly/eoIxX9


17th Conference on Retroviruses
and Oppertunic Infection



Session 41-Oral Abstracts
Virus–Host Interaction: HIV and XMRV
Friday, 9:30 am-12 noon; Room 2011



Paper # 151


XMRV: Examination of Viral Kinetics, Tissue
Tropism, and Serological Markers of Infection

X Qiu1, P Swanson1, K-C Luk1, J Das Gupta2, N
Onlamoon3, R Silverman2, F Villinger3, S Devare1, G
Schochetman1, and John Hackett, Jr*1

1Abbott Diagnostics, Abbott Park, IL, US; 2Cleveland
Clin, OH, US; and 3Yerkes Natl Primate Res Ctr,
Emory Univ, Atlanta, GA, US



Background:

Xenotropic Murine Leukemia Virus-related Retrovirus
(XMRV) is a human retrovirus recently discovered in
familial prostate cancer tissue using DNA array based
Virochip technology.

Understanding viral replication kinetics, tissue
tropism, and the host immune response is
fundamental to establish the etiology of XMRV
infection in human disease.

Development of serologic assays to detect
XMRV-specific antibodies would facilitate
epidemiologic studies.



Methods:

Five rhesus macaques were inoculated intravenously
with XMRV.

Blood was collected throughout the course of
infection, and tissue from multiple organs was
harvested at necropsy.

Two macaques were necropsied at day 6 or 7 and
one at day 144 post infection.

The remaining 2 animals were re-inoculated with
XMRV on day 158 and necropsied on day 291.

XMRV-specific immunoreactivity was monitored by
Western blot using viral lysate.

Recombinant env gp70, p15E and gag p30 were
utilized to develop serologic assays on the
high-throughput automated ARCHITECT instrument
system (Abbott Diagnostics).




Results:

XMRV inoculation resulted in low transient plasma
viremia, although proviral DNA persisted in
circulating peripheral blood mononuclear cells for
several weeks.

Of interest, the earliest leukocyte targets were CD4+
T cells and NK cells followed by CD8+ enriched T and
CD20+ enriched B cells (50% positive); CD14+
monocytes were negative.

Animals sacrificed at the acute stage showed
evidence of viral replication in spleen, lung, lymph
nodes and liver.

In contrast, sacrifice of 2 animals at 19 weeks post
XMRV re-inoculation showed greater dissemination of
XMRV DNA and RNA in various organs including the
GI and urinary tract as well as in vaginal tissue of
the one female.

By Western blot analysis, all 3 chronically infected
macaques developed antibody responses to env and
gag proteins.

The serologic assays demonstrated 100% sensitivity
by detecting all Western blot positive serial bleeds
from the XMRV-infected macaques.

Preliminary results showed evidence of detectable
reactivity to all 3 antigens in a low proportion
(~0.1%) of US blood donors.



Conclusions:

These data suggest that lymphocytes are a primary
target for replication persistence (low grade
replication) of XMRV in the absence of detectable
plasma viremia.

This study identified specific serological markers
useful for detection of antibodies induced by XMRV
infection. The prototype antibody assays will
facilitate large-scale epidemiological studies.






``````


The 17th Conference on Retroviruses
and Oppertunic Infection

Session 41-Oral Abstracts
Virus–Host Interaction: HIV and XMRV
Friday, 9:30 am-12 noon; Room 2011

can be found at: http://bit.ly/ijzyPo








~~~~

XMRV -Human Retrovirus, Not a Lab Contaminant

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January 1, 2011



XMRV: A Human Retrovirus with
Unknown Pathogenic Potential,
Not a Lab Contaminant



The recent proclamation that “XMRV is not the cause
of CFS,” came from an individual who did laboratory
experiments to show how PCR experiments can
become contaminated.

These results have nothing to do with the reality of a
disease or the methods used by those who have
detected XMRV in the blood and tissue of patients
found to be infected.


The positive studies, which cannot be explained
away by PCR experiments, are those which have
used multiple methods to show that XMRV is a live
replicating gamma retrovirus in human blood and
tissue samples using the gold standard methods of
viral isolation and antibody testing, in addition to
PCR.

Unsupported conclusions, such as the one offered by
the Wellcome Trust spokesman, often create
sensational headlines but do little to move science
forward.

Authors of the positive XMRV studies have been
extremely careful not to claim causality, realizing
that more scientific research is required to make
such a statement.

However, one fact still remains clear. Not one of the
negative studies changes the results of the scientific
research done by Lombardi et al., Lo et al., Urisman
et al., and Schlaberg et al.




The WPI-led scientific study, which rigorously ruled
out contamination, revealed high associations of
gamma retroviruses with physician-diagnosed CFS
patients, using four different methods of detection.

Recent commentary associated with the negative
research papers on XMRV, which used only one
testing method, claimed that these studies proved
that XMRV was not the cause of human disease.

On the contrary, what the authors of the
“contamination studies” confirmed is something that
most experienced scientists already know; there are
risks associated with using PCR if one does not
properly control for contamination.

They cannot conclude that other research groups had
the same problems or that “XMRV is not the cause of
CFS”.

Most significantly, the recent Retrovirology
publications failed to address the most important
pieces of scientific evidence of human infection in
the previous XMRV studies, including the fact that
XMRV positive patients produce human antibodies to
gamma retroviruses, XMRV integrates into human
tissues, and infectious virus has been cultured from
the blood of hundreds of patients with a diagnosis of
Chronic Fatigue Syndrome and M.E.

Humans do not make antibody responses to mouse
DNA sequences from contaminated lab experiments.

The Retrovirology studies only point out that XMRV
research cannot be done in a mouse laboratory
without extreme caution and should not rely solely
on PCR methods.




Many researchers realize that the question of gamma
retroviruses and human disease cannot and should
not be dismissed lightly.

Retroviruses integrate into their host’s DNA causing
life long infection. Human retroviruses, such as HIV
and HTLV-1, are causative for immune deficiencies,
neurological disease and cancer.

Animal studies involving XMRV demonstrate that the
virus moves quickly away from the blood to various
organs within the body, such as the spleen, lymph
nodes, GI tract, and reproductive organs.

This helps to explain why the virus is difficult to
detect in blood even as it replicates in the tissues of
those infected.

Other studies using mouse models of Murine
Leukemia Virus infection, a close relative of XMRV,
have shown significant tissue involvement soon after
infection, resulting in many physical symptoms of
disease including cognitive deficits and immune
deficiencies, symptoms which are well documented in
patients with XMRV associated diseases.



Many anxious patients have asked, “Where do
we go from here?” and “Is this the end of XMRV
research?”

The answer to the second question is an unequivocal
“no.”

As to the first question, a quick check of the status
of ongoing research in various labs confirms that the
research groups who have been working on XMRV
over the past year are still hard at work developing
better assays to check the world’s blood supply for
the new retrovirus, finding correlates of immune
dysfunction, engaging in animal studies, extending
their findings to other groups of patients, and in
general, enthusiastically continuing their research.

They understand that novel scientific discoveries,
which threaten current dogma, will continue to be
challenged until the evidence can no longer be
denied.

For instance, there are still those few who question
the fact that HIV is the cause of AIDS.

It took Nobel Prize winner, Dr. Barry Marshall, 17
years and three trials in which he infected and then
cured himself of H-Pylori associated ulcers, before
the medical world would accept the fact that the
bacterium causes the disease.

Today we are engaged in a new battle to prove
that human gamma retroviral infections, such as
XMRV, are underlying pathogens in neuro-immune
diseases and untold cancers.



It is clear that more research must be done to clarify
the role of gamma retroviruses in human disease.
However, when a pathogen such as XMRV is found in
over 80% of those tested with the same diagnosis,
causality is clearly a reasonable hypothesis that
begs further scientific and medical research.

It is a known fact that important questions of
causality can often be answered through well
designed clinical trials. For those who have suffered
for years from these debilitating diseases, novel drug
trials cannot begin soon enough.



WPI’s collaborative research projects are
revealing the infectious and inflammatory nature
of neuro-immune diseases, providing strong
evidence against the use of CBT and exercise
therapy as rational “treatments” for those who
are ill.


Such knowledge underscores the urgent need for
much more private and federal funding of biological
research to provide diagnostic tests and effective
drug therapies for the millions who are ill, stop the
spread of infectious retrovirus(es), and end the
devastating cycle of disease.




Annette Whittemore

President Whittemore Peterson Institute




~~~~~~

XMRV Not Laboratory Contaminant -Strong Argument

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Many thanks to Dr Speedy


Professor Racaniello: Why XMRV is not a
laboratory contaminant at: http://bit.ly/dRhPZu


~jvr



````

http://bit.ly/hh2KQn


virology blog
ABOUT VIRUSES AND VIRAL DISEASE




Retroviral integration
and the XMRV provirus


4 January 2011


By Vincent Racaniello
A virology Professor unravels viruses
Questions? virology@virology.ws




A strong argument that the novel human retrovirus
XMRV is not a laboratory contaminant is the the finding
that viral DNA is integrated [http://bit.ly/eTDb5T] in
chromosomal DNA of prostate tumors.

Why does this result constitute
such strong proof of viral infection?



Establishment of an integrated copy of the viral genome –
the provirus – is a critical step in the life cycle of retroviruses.

Proviral DNA is transcribed by cellular RNA polymerase II to
produce the viral RNA genome and the mRNAs required to
complete the replication cycle. Without proviral DNA, retroviral
replication cannot proceed.



To produce proviral DNA, the retroviral RNA genome is
converted to a double-stranded DNA by the viral enzyme
reverse transcriptase.

This step occurs in the cytoplasm.

Specific and efficient insertion of the viral DNA into the host
cell DNA is catalyzed by a viral enzyme called integrase.

This enzyme recognizes and nicks the two ends of viral DNA,
and the new 3'ends are then joined covalently to the host
DNA at staggered nicks made by integrase.


The image below shows some of the characteristic features
of retroviral integration.

A the top is the unintegrated linear DNA of avian
sarcoma/leukosis virus produced by reverse transcription.
Upon completion of integration, two base pairs (AA•TT) are
lost from both termini, and a 6-bp target site in host DNA
(pink) is duplicated on either side of the proviral DNA.

This target site varies in length from 4 to 6 bp among
different retroviruses. The proviral DNA (middle) ends with
the conserved 5'-T G…C A-3' sequence.

The provirus serves as a template for the production of the
viral RNA genome (bottom).



``````````

Photo: http://bit.ly/hh2KQn

a bigger version can be found at: http://bit.ly/ePtaUU

`````````



To identify XMRV proviral DNA, genomic DNA was isolated from
prostate tumors, and DNA was amplified using a primer that
annealed in the viral env gene, near the right-hand LTR.

Nucleotide sequence analyses of amplified DNAs from 14
different patients showed the expected viral CA sequence
followed by human DNA.

However, the other cardinal sign of retroviral integration –
duplication of host DNA sequences flanking the integration
site – could not be confirmed, because only the right-hand
integration site was studied.


The isolation of the entire proviral DNA, including both flanking
integration sites, from patients with prostate cancer or chronic
fatigue syndrome would be additional evidence that XMRV is a
virus that infects humans.




Kim, S., Kim, N., Dong, B., Boren, D., Lee, S., Das Gupta, J.,
Gaughan, C., Klein, E., Lee, C., Silverman, R., & Chow, S.
(2008). Integration Site Preference of Xenotropic Murine
Leukemia Virus-Related Virus, a New Human Retrovirus
Associated with Prostate Cancer Journal of Virology, 82 (20),
9964-9977 DOI: 10.1128/JVI.01299-08 [http://bit.ly/ffRhsS]




~~~~

Pending XMRV study -Dr Dusty Miller

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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>>>> 4 January 2011 <<<<
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http://on.fb.me/eDFZpf


XMRV Global Action


Response from Dr Dusty
Miller on pending XMRV study


By XMRV Global Action


Tuesday, 4 January 2011




As you may recall, we posted some preliminary
information on a possible XMRV study to be
conducted by Dr Dusty Miller at the Fred Hutchinson
Cancer Research Center in Seattle.

We emailed Dr Miller at his @fhcrc.org address.

Dr Miller responded today via email to our enquiry for
information.

Here is a summary, with the email appended below.
FYI Dr Miller also posted this information in the
discussion thread on the Niceguidelines Blog here:
http://bit.ly/ikoZ4P




Summary:

* Yes, Dr Miller will be conducting a study on
XMRV positive patients

* It is not a neurological study

* The study has NOT yet been formally announced
- it will be announced once IRB approval has
been received

* Patients from Canada and the US who have
previously tested positive for XMRV will be
potentially eligible for the study



``````

NB: Dr Miller has specifically requested that
patients not contact him with questions about the
study, and has indicated that Ecoclimber will be
assisting him with this. Ecoclimber provided this
email address: FHCRC_RESEARCH@hotmail.com

``````



Clearly patients need to do their own due diligence
about any study they participate in - we are merely
relaying Dr Miller's request.

That said, it might be argued that patients should
welcome the participation of another keen
retrovirologist in ME/CFS/XMRV research.

Do keep in mind that this study has not yet been
formally announced. It may well be that the formal
announcement will address many questions about
the study.


While it is interesting that Dr Miller will not be using
positive control samples from the labs of the WPI, or
elsewhere (eg. Dr Singh, Dr Alter etc), this might be
an astute move.

Given the power of the rumor mill on
*contamination*, by bypassing these labs and going
to the patients directly, Dr Miller might in effect
nullify concerns about the contaminated lab vector.

This argument might also hold if Dr Miller is
intentionally using different reagents etc. than the
WPI.

Patients who have tested positive through VIPDx,
the WPI, the FDA, or other venues might also
provide a voice to possible discrepancies if other
studies find them negative for XMRV/MRV's.

While there have been concerns raised about many
XMRV studies, the reality is that by participating in
multiple studies, patients might in fact provide a
"reality check" and informed voice on results
(particularly if their results are unblinded, and there
are discrepancies between multiple XMRV study
results).



What remains unanswered is which ME/CFS criteria
are being used to identify patients - and how the
fulfilment of these criteria will be confirmed via
long-distance.

Also unclear is the scope of the role which laymen
such as Cort and Ecoclimber will be playing in this
study.

There are multiple threads on the IAP issue that you
can read up on, at: http://bit.ly/hxJA3S



What is potentially exciting is the prospect of an
independent lab confirming WPI, FDA, and/or other
labs' positive XMRV/MRV findings.

Bottom line, these are early days for this study, and
we'll post the formal announcement as soon as it's
available.





``````



From: Miller, Dusty
[mailto:dmiller@fhcrc.org]

Sent: 2011/Jan/03 10:46 AM

To: (XMRV Global Action)

Subject: Re: Request to confirm
information: Is study of neurological
sequelae in XMRV+ve patients "legit"?



Thank you for your email. Yes I am
planning a study basically as described by
Ecoclimber. However, I don't plan any
neurological studies at this point, as some
postings imply. I just posted the following
on the Niceguidelines Blog summarizing the
intent of the study:



*adustymiller* is indeed Dr. A. Dusty
Miller. I have a lab at the Fred Hutchinson
Cancer Research Center.



Given all of the controversy surrounding
the claims that XMRV and/or related
retroviruses are present in humans, my lab
members and I want to test for the
presence of XMRV in samples freshly
obtained from those most likely to carry
the virus. This includes those who have
tested positive by PCR and/or virus
assays performed by other labs.
However, we have not currently set up
formal arrangements with other labs,
including the WPI, to obtain samples from
people they have tested. Instead, we
plan to rely on volunteers from the
CFS/ME community to provide small
samples of blood for analysis.


``````````````````
(XMRV GA's note: In other words, they
ARE using positive controls, but are
obtaining these samples directly from
patients, not via the labs, to rule out
potential for lab contamination)

``````````````````


I have been in communication with
Ecoclimber and Cort to refine the
objectives and criteria for our study and to
help with recruitment of subjects. We
understand that there is heated
controversy over how the study should be
done, but I hope my extensive experience
in retrovirology provides some assurance
that we can perform this study properly.



Regarding the IAP issue, published
results and our analysis indicate that PCR
assay for mouse IAP sequences provides
the best method to rule out mouse DNA
contamination in our study. One can find
relatives of these sequences in the human
genome, but they are not closely related
and do not amplify with the published IAP
primers.



I want to assure the CFS/ME community
that I have no hidden agenda, other than
that I would like to apply our expertise in
retrovirology to contribute to an
understanding and possible treatment of
CFS/ME. This predisposes me to want to
find the virus in humans, but I clearly
understand that false positive results are
not in anyone's best interests.



Please pardon me if I can't address
many questions raised on the various
blogs. I already spend way too much time
in the lab! "



I am waiting for Institutional Review
Board approval of my study before
beginning. This should happen soon.



And yes, I certainly would be
interested in subjects from Canada
proven to be XMRV+ by another group.



Please don't have subjects contact me
directly about participation in the study.
Ecoclimber has volunteered to help me
with this. We will formally anounce the
study when I obtain IRB approval.



Sincerely,



A. Dusty Miller, PhD

Member

Fred Hutchinson Cancer Research Center




``````





You can read our earlier post on this topic here:
http://on.fb.me/dWFtJJ













~~~~

ME/CFS -Family’s Nightmarish Experience

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
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>>>> 3 January 2011 <<<<
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~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~






The story below reminds me of a UK Prof, who
created a terrible climate for ME patients all over
the world. (he also dictates the strategy of the CDC,
with the result (by formulating endless stretching
criteria), that the prevalence figures in the USA are
now the same as with the flawed Oxford standards.


In October 2008 The CFIDS Association of America
proudly announced on their website:

More than four million Americans have CFS,
according to studies conducted by researchers
at the Centers for Disease Control and
Prevention (CDC).

http://bit.ly/i7hNu9
(but the text has been changed now).


(Because of brainfog the name of this UK Prof has
slipped me at the moment).


What I remember is, that he is a member of the
supervisory board of a company named PRISMA.

This same company is being paid many millions of
pounds to supply *rehabilitation* programs (such as
CBT and GET) to the NHS for use on *CFS* patients.

He is also an officer of the insurance company
UNUM. Insurance companies save a huge amount
of money in payments if illnesses can be viewed as
mental and not physical.


Anyhow this Prof was involved in a case
where a severely ill, virtually paralysed young
boy with ME/CFS was subjected to horrific
psychiatric *treatment* including throwing
him into a swimming pool:

i.e swim or drown....





He couldn't swim......!




~jan van roijen





````



http://bit.ly/dYoMA8


MOUNTAIN Xpress
Ssheville & Western North Carolina



The Beat: 2010's biggest hits



by Jake Frankel

on 01/02/2011


The Mountain Xpress website can often appear to be
a publication unto itself. In addition to showcasing
much of the content that’s published in our weekly
print edition, the online outlet offers a plethora of
exclusive breaking news, videos, reviews,
slideshows, podcasts, personals, community forums,
aggregated citizen reports and much more.


In 2010, eyes and ears tuned into that world like
never before, with Web visits up nearly 40 percent
over 2009. Here’s a look at some of the most visited
areas of Xpress’ online landscape.



1)

News: Social services,
social media and sustainability


The news story garnering the most online views last
year was *Local Family Feels Vindicated by
Breakthrough Research.* [http://bit.ly/eyZFHR].

The article, written by Xpress contributor Nelda
Holder, was the third in a series of stories tracking a
Black Mountain family’s nightmarish experience after
an unidentified source accused Lisa and Rodney
Baldwin of medically neglecting Ryan, their only
child.

This installment included an interview with Ryan
after he was diagnosed with XMRV, a rare
neuro-immune disease.



Recounting his time in the custody of
the Buncombe County Department of
Social Services, Ryan explained that
he:

*was put in homes that were not
wheelchair-accessible, [where] I would be forced
to climb steps.

In addition, I was given physical and psychological
treatments designed to either exercise my
disabilities away or to convince me that they didn’t
exist in the first place. …

I definitely believe that changes need to be made
in how social workers handle these sorts of
situations.*





``````````
jan van roijen: I left away the rest
of the other *most-viewed news stories*

``````````




http://bit.ly/eyZFHR



Local family feels vindicated
by breakthrough research



by Nelda Holder

in Vol. 17 / Iss. 08 on 09/14/2010



Editor’s note:

Earlier this year, we reported on a Black Mountain
family's experience after an unidentified source
accused Lisa and Rodney Baldwin of medically
neglecting Ryan, their only child

(see *Home for the Holidays,* Jan. 6, and *Home
for Good?* Feb. 24 Xpress).


Although he’been diagnosed with
chronic fatigue syndrome and declared
medically disabled by the Social Services
Administration, the Buncombe County
Department of Social Services took
custody of Ryan, who spent 10 months
in three separate foster placements.



The family was reunited last November.



````


The one-page letter dated Sept. 1,
2010, contained the following
statement:


*I wanted to inform you that your son Ryan's tests
indicated that he has positive [sic] evidence of
XMRV in his blood sample drawn by PSI several
months ago. As you know, we are just at the
beginning of understanding what this means and
what the implication may be for Ryan and your
family*.



The letter, addressed to Lisa Baldwin, was signed by
Judy Mikovits, director of research for the
Whittemore Peterson Institute for Neuro-Immune
Disease [http://bit.ly/6nwGh5], located at the
University of Nevada, Reno.


The institute has been in the forefront of recent,
groundbreaking research into the association of the
XMRV retrovirus with myalgic encephalomyelitis/
chronic fatigue syndrome, in collaboration with the
National Cancer Institute and the Cleveland Clinic.


The family had worked with *advocates
knowledgeable about the institute* to get Ryan
enrolled for testing, Lisa explained. Getting the
positive test results, she said, has made them *more
optimistic that treatments will follow that will help
Ryan.*


*We have lived with Ryan's disability for over six
years, and getting this news has definitely impacted
us as a family,*

she wrote in an e-mail to Xpress.

*The knowledge we now have and are making public
will remove some of the public's doubt inflicted by
DSS,*

she continued, referring to the charges filed against
them.

*I am happy to see one solid thing in our future,
even if it means once again dealing with an unknown
condition, this time called XMRV.*



Ryan, who turned 18 in July, continues to live with
his parents (and his dog) while working toward his
high-school diploma online. Xpress interviewed him
recently; here’s what he had to say:



Mountain Xpress:

What are your thoughts/feelings about (a) having
participated in this groundbreaking research, and
(b) your test results?



Ryan Baldwin:

(a) First of all, I feel very fortunate to have even
been included in the research in the first place. I
know that there are many other patients out there
who are waiting to be tested, and I’m very grateful
that I was given the opportunity to be tested so
quickly.


(b) Knowing now that I have XMRV helps me remain
optimistic about future treatment options. It is also
reassuring to now have a concrete explanation for
some of the symptoms and problems that I have
experienced, especially those of the immune system.


Mountain Xpress:

When you were in the custody of the Buncombe
County Department of Social Services, did you think
you were receiving appropriate care for someone
with your diagnosis? If not, why not?


Ryan Baldwin:

The entire 10 months that I was in the department’s
custody, I felt that the treatment I was given was
neither appropriate for someone with chronic fatigue
syndrome nor for someone who is considered
medically disabled.


I was placed in the care of foster parents who were
told that nothing was medically wrong with me. I
was put in homes that were not wheelchair-
accessible, [where] I would be forced to climb
steps.

In addition, I was given physical and psychological
treatments designed to either exercise my
disabilities away or to convince me that they didn’t
exist in the first place.


Mountain Xpress:

Do you have any suggestions concerning training or
education for social-service workers investigating
medical-neglect complaints in a situation like yours?


Ryan Baldwin:

I definitely believe that changes need to be made in
how social workers handle these sorts of situations.

However, it isn’ t going to be as simple as additional
training. There is a severe lack of general under-
standing when it comes to certain disabilities in this
case and others like it.


No amount of simple training or extra guidelines is
going to help ... until the public as a whole is better
educated in and understands the complexities of
these illnesses.


Mountain Xpress:

Is there anything else you'd like to say?


Ryan Baldwin:

Not understanding or having no desire to learn about
CFS is no excuse for widespread ignorance.


Be it in the medical field, legal system or just
everyday life, efforts need to be made to reform
the system with a better understanding of this
illness.






— Freelance reporter Nelda Holder can be reached
at: nfholder@gmail.com.




````


for the many comments see: http://bit.ly/dYoMA8






~jvr










~~~~

XMRV -we must not forget the Lessons of History

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Send an Email for free membership
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http://www.ukunote.com/?p=10011



Light of Sience




High degree of vigilance:
a possible new with the
HIV virus less dangerous




January 1, 2011



There are two previously known retroviruses can
infect humans and cause serious diseases: HIV
(AIDS virus) and HTLV (human T cell leukemia virus,
can cause T-cell lymphoma and T cell leukemia).

In recent years, also found a third infected human
retrovirus: XMRV (heterophile murine leukemia
virus-related virus), this virus may be associated
with prostate cancer and chronic fatigue syndrome
(CFS) related.

As might be suspected XMRV is a new virus HIV as
dangerous, XMRV’s found in the international
scientific community quickly caught a huge
response.

Twenty years, the research surrounding HIV, the
international community has formed a large strength
of the professional scientific research team.

XMRV and HIV belong to the retrovirus, the past
year, specializing in HIV, which had the world’s top
research institutions have the relevant research into
the XMRV become the main force of XMRV, related
research progress has been very rapid.


This year in September, the U.S. National Institutes
of Health (NIH) has organized a first international
XMRV seminar attracted 11 countries around the
world-renowned research institutions in 57 of 225
international delegates.

NIH’s Dean Collins (Francis Collins) personally
presided over the seminar and keynote speech, which
is rare in the history of the hospital, which is XMRV
has been unprecedented global attention as an
example.


XMRV first discovered in 2006 in men suffering from
prostate cancer tissue samples. Speculate as XMRV
virus and HIV, may be transmitted through blood
transfusion or exchange of body fluids.

July 2009, the United States invited by the NIH
Cancer Institute held a joint meeting internal and
external experts to discuss the XMRV infection on
public health.


In the October 8, 2009 the United States “Science
(Science)” A study published in the journal, the first
report of chronic fatigue syndrome (CFS) and the
potential relevance XMRV virus .

In this study, we found XMRV diagnosed in 67% of
CFS patients detected in the blood, but only 3.7% in
the blood cells of healthy individuals detected XMRV
of DNA.

Thesis of the article published in this study further
found that up to 98% of CFS patients, the virus can
be detected.


U.S. Department of Health and Human Services
(HHS) published the article of the month immediately
announced: HHS will support the assessment of
blood supply XMRV the potential risks of research
and development of standardized XMRV detection
method.

To this end, HHS has also established a special
inter-departmental “blood XMRV research group”, the
coordination of action.


As speculated XMRV and chronic fatigue syndrome
(CFS) may exist between the contact and may spread
through blood transfusion, blood transfusion in many
countries in Europe and America later authorities
have announced emergency measures, has been
indefinitely postponed or prohibited diagnosis
individual donations for the CFS.

Canada in early April this year announced a ban on
world’s first blood donation in patients with CFS. In a
very short time since the countries have announced
the ban, including New Zealand, Australia, the
United States, United Kingdom.


U.S. Food and Drug Administration (FDA), NIH and
Harvard Medical School on August 23, 2010 in the
“U.S. National Academy of Sciences (PNAS)”
published on the joint, the results support the above
“Science” magazine reports.

Although they found that not XMRV, but slightly
different sequence of another murine leukemia
virus-related virus PMV, but they belong in the
classification of hepatitis C retrovirus.



``````````````````````
~jan van roijen:
This statement is not correct!

XMRV does not belong to the
classification of hepatitis C;
it is a *Human GammaRetroVirus*.
``````````````````````


United States of leading experts in anti-retroviral
Coffin (John Coffin) Professor, XMRV in the general
population of the infection may be more worthy of
attention.

Previous study healthy people XMRV infection was
3.7%, if the data can be extended to the United
States, means that the United States alone, there
are nearly 1000 million people carry the pathogenic
potential of retroviruses.

As with HIV, XMRV cause illness or death in the past
few years or decades may be in a dormant state.

These have been infected but not disease may have
spread the virus’s ability, but their blood can not
limits. How to control such sources of infection, is a
more serious challenge. There is an urgent need for
energy is simple, rapid and accurate method to
detect XMRV.



U.S. NIH, FDA, Center for Disease Control and
Prevention (CDC) to take prompt action, the United
Abbott and other world-class diagnostic products
company, go all out for XMRV related diagnostic
method.

Sensitive trade surplus has been the development of
nucleic acid detection method, quantitative detection
of DNA or XMRV plasma RNA, under laboratory
conditions have been reported up to 100% accuracy
and no false positive or false negative.

XMRV has been established to the sensitive cell line
proliferation, the level of detection in single-copy
replication XMRV, and large-scale production XMRV
virus particles as antigen detection.

In addition, serological methods have been
established (such as ELISA, Western Blot, etc.) and
immunohistochemistry methods.

The next step is to shade a variety of representative
samples with reference material assembled into a
series of packages (panel), multiple testing in
multiple laboratories to test the platform
comparative analysis of the panel to determine the
standardized procedures of various detection
methods and various quality control indicators, for
eventual FDA approval, to meet the market demand.



Before and after 1984, the pathogen of AIDS in
humans and possible transmission route in some
preliminary results, the relevant administrative
departments to move slowly, leaving many countries
(including France, the United States, Germany and
other developed countries ), have appeared in the
tragic spread of AIDS through blood transfusion.


XMRV current research and found the beginning of
the HIV situation is similar. As XMR discovered not
long, the current study is far from adequate, the
results of different laboratories are sometimes
inconsistent or even conflicting.

The source of the virus and pathogenic mechanisms
are not yet established, it is with prostate cancer
and surviving the causal relationship between CFS
controversial.

But we must not forget the lessons of history must
not repeat the discovery of HIV at the beginning of
human mistakes. Must take timely and decisive
measures to prevent the manufacture of our hands
by another AIDS epidemic. With the progress of the
study may also have taken measures to require
appropriate adjustments.


XMRV momentum from the current study to see
estimated in a year or two will be able to draw
definitive conclusions.

If the XMRV really new pathogens, and humans will
be able to find effective prevention and control
methods.


CFS in the global average of 0.4% -1% incidence in
theory should also apply to China, which has never
been of great importance to CFS research. China is a
populous country, it must immediately take the
necessary action.












~~~~