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




~~~~~~