Saturday, January 8, 2011

Brava, Dr. Myhill!

Doctor gets her practice licence back

Saturday 8th January 2011, 11:30AM GMT.

Mid Wales doctor who was suspended from the medical register for a
year because of the potential risk she posed to patients has had the
order lifted by the General Medical Council.

The GMC this week lifted Dr Sarah Myhill's suspension and restored her
licence to practise medicine, subject to conditions.

The former NHS GP, who specialises in treating people with chronic
fatigue syndrome, today said she was "delighted" by the U-turn.

Dr Myhill, 52 and based in Llangunllo, near Knighton, was suspended by
the GMC in October last year. She was alleged to have provided
"inappropriate" treatment to a patient in 2009 after she recommended
vitamin and magnesium injections for suspected chronic fatigue
syndrome.



Read more: http://www.shropshirestar.com/news/2011/01/08/doctor-gets-her-practice-licence-back/#ixzz1ATDBCtmW

Laura Hillenbrand on Facebook

 
 
I read "Unbroken" while I was on vacation last week and it was gripping, moving, emotionally-charged ... the more sensitive souls may not be able to handle some of the POW camp violence, but for those with the wherewithal, it's a must-read.
 
 
 

XMRV, CFS and Money

Permission to Repost
XMRV, CFS and Money

 

This is meant to be an open document that anyone can edit or
add to.  The aim is to provide a
snapshot of potential biasing interests of a financial nature when it comes to
considering opinions about XMRV and CFS. 
Conflicts arising from psychic and professional conflicts might well be
even more significant than financial factors, but that is a whole different
kettle of fish.

 

I have often thought that the considerable expense of an
illness that can remove people from the workforce and sometimes result in them
becoming a financial liability to society would be incentive enough for
governments to support serious research. 
The fact that the CFS patient population is likely to continue to grow
because of the chronic nature of the illness promises to make the disease a
major cost to the economy.  If XMRV
turns out to be the culprit, the cost could be astronomical.  So in financial terms, there are opposing
pressures and one might think, a need to invest serious money in getting to the
truth of XMRV and CFS.

 

A distinction between the two lists below is that an
XMRV/CFS connection would lead to potential financial advantages
for some and potential losses for others.  Whilst no connection maintains
far greater existing financial advantages.

 

In Britain the cost of CFS to the economy has been estimated
as £3.5 billion p.a., though I'm not sure if this allowed for the fact that
many PWCFS continue to contribute to some degree and in other ways to the
economy.  It is well known that PWCFS
frequently encounter obstacles to claiming welfare benefits and support that
they are entitled to and this probably constitutes savings of many millions to
the economy.  Nevertheless, the net cost
is still likely to be in excess of £2 billion, and one might think that such a
figure would find government agencies anxious to investigate the possibility of
a retroviral cause for the illness.

 

If memory serves, the £3.5 billion figure is based on
250,000 patients.  Treatment of a HIV
positive person in the UK is estimated at £16,000 p.a. and as treatment only
prevents the development of AIDS illnesses (does not cure the HIV infection),
treatment is ongoing for the patient's lifetime.  So if the UK had 250,000 XMRV patients that could amount to £4
billion p.a. for retroviral treatment alone – and patients might still remain
ill, so the cost of treatment might be additional to existing costs.  If one adds to this the possibility that
XMRV positive people might qualify for social welfare support in parity with
other disabling diseases such as MS or heart disease; the extra costs might be
considerable.

 

From a purely financial perspective, it might be that the
only advantage of XMRV being connected to CFS would be if treatment could
restore and/or improve patient's productivity. 
Without this, it might be more cost-effective to keep CFS patients in a
biopsychosocial nowhere land; because the patient's suffering doesn't cost a
penny.  In this respect PWCFS are not
only the 'undeserving sick' in medical terms, but financial as well.

 

Peter Kemp

----------------------------------------------------------------------------

 

Financial Interests that could be opposed to a connection
between XMRV and CFS

 


Insurance
     companies that assert a claimant with CFS has a psychological illness can
     refuse to pay for non-psychological medical treatments.
Insurance
     companies may claim CFS is psychological and those companies that have
     time-limited indemnity for psychological illnesses can stop disability
     payments.
Medical,
     science and psychology professionals that benefit from employment or
     association with insurance companies might continue to enjoy such custom
     and patronage while doubts exist about the cause of CFS.
Medical
     and science professionals that have built or enhanced their career or
     reputation based on theories of CFS being a psychological illness can
     avoid the damage a biological explanation might cause to their career and
     income.
Medical
     and science professionals that propose psychological explanations for CFS
     and as a result, benefit from association with government agencies
     responsible for health provision, welfare benefits and population health
     can continue to enjoy the advantages of their association.
People
     with CFS would not require investigation or treatment for XMRV – saving
     numerous agencies unknown, but probably very large amounts of money.
The
     general population would not require testing to identify infected but
     healthy individuals.  Additionally
     there would be no requirement for measures to prevent the development of
     disease in infected but healthy individuals, or introducing measures to
     investigate or control spread of the infection.


 

Financial Interests that could favour a connection between
XMRV and CFS

 


Retrovirologists
     and XMRV scientists and doctors might be able to access funding from what
     could become a huge public health budget to address what might be a
     significant threat to human health.
Research
     and development of anti-XMRV drugs could provide profitable opportunities
     to researchers and pharmaceutical companies.
Doctors
     and scientists with biomedical research and treatment experience of CFS
     could find their knowledge and experience in high demand.
Insurance
     companies and welfare and benefits agencies might find that customers who
     were previously thought to be long-term or permanently disabled, are
     actually treatable and able to rejoin the workforce.
Patients
     with XMRV could find it easier to claim insurance and welfare benefits,
     access healthcare and other social support; compared to alternative
     diagnoses such as ME or CFS. (this is a 'pro' from the patient
     perspective)
Patients
     with XMRV denied welfare or healthcare based on opinions of professionals
     claiming their illness is psychological might be successful in suing
     culpable parties.


Friday, January 7, 2011

Thursday, January 6, 2011

Don't let a hospital kill your child - CNN.com

 
23 years ago, my specialist told me to stay away from ERs (and hospitals in general) because they are full of germs, and the last thing a depleted immune system needs is to be exposed to that wide a variety of germs.
 
Having just watched a friend die of multiple Hospital Acquired Infections, I took him seriously.  I'd rather die in my own bed of whatever cold/flu I picked up at the grocery store than add TB, staph, MRSA, C.diff., etc. to the problem!

Wednesday, January 5, 2011

Antibiotic may ease irritable bowel syndrome - CNN.com

 
"Rifaximin, sold under the brand name Xifaxan for travelers' diarrhea, appears to be safe and doesn't seem to foster resistance among gut bacteria, meaning it can be used over and over, Pimentel says. That could be important, because the number of study participants who reported lasting relief from their two-week rifaximin regimen gradually declined in the 10 weeks following treatment."

XMRV: A Human Retrovirus With Unknown Pathogenic Potential, Not A Lab Contaminan

  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.  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. 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. 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
Related Links:
*
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome
Judy A. Mikovits et al, 10.1126/science.1179052, Science Express
*
Presence Of Murine Leukemia Virus Found In Chronic Fatigue Syndrome Patients
FDA Press Release
*
Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors (FULL TEXT)
Shyh-Ching Lo, Harvey J. Alter et al PNAS
*
Red Cross Bars Chronic Fatigue Syndrome (ME/CFS) Patients From Donating Blood
Rob Stein, The Washington Post

READ THE NEWS ON ONE CLICK
http://www.theoneclickgroup.co.uk

Tuesday, January 4, 2011

DNA Evidence Clears Texas Man Who Spent 30 Years In Prison

 
XMRV evidence clears millions accused of laziness who spent 30 years imprisoned in bedrooms.  How much reparations will the govt pay us for Straus/Reeves imposing life sentences on innocent victims?
 
 

Patient Empowerment Blog: A Call to Physicians

Patient Empowerment Blog
A Call to Physicians: It's Time For You to Weed Out Those Rotten Apples

By Trisha Torrey
Monday January 3, 2011

Today's blog post is written for doctors, not patients. I don't often
address doctors directly, but you'll see in a moment why that's
important for this post.

I have a great relationship with most of the doctors I've met. We have
a mutual respect and great conversations. And there are many
conversations -- I spend a lot of time talking to doctors. I meet them
in person at conferences - or parties. I see and exchange information
with doctors at Twitter and Facebook and other online venues. I
interview them or ask them to help me understand something medical --
or sometimes we just chat.
And here's what I have found. The doctors who are willing to talk
about patients and empowerment are usually quite open and forthcoming
about their own experiences, good and bad. But few (if any) are
willing to discuss their colleagues who don't treat patients well, who
are disrespectful, or arrogant, or who just aren't doing their jobs.

When the point is raised, they either deny those bad doctors exist,
they brush aside the conversation, or they make sure to mention the
"few bad apples" and move on.
But guess what, doctors.... your numbers of bad apples have begun to
rot the rest of your barrel.

Why do I bring this up today? My About.com colleague, Adrienne Dellwo,
who writes about chronic fatigue syndrome and fibromyalgia, posted a
few days ago about an experience with a disrespectful doctor - and the
numbers of comments to her post show that such disrespect,
dismissiveness and arrogance is much more far-reaching than those
doctors I talk to would like to think it is.  They are compounded by
the comments about arrogant doctors made by readers right here at the
patient empowerment site.

Yes, I do understand why the problem is growing and getting out of
hand. As fair reimbursements are tougher to come by, doctors are
becoming choosier about the patients they will care for.  Once a
patient needs treatment that will take any more effort than the doctor
assesses the reimbursement will cover, these rotten apples take steps
to be sure that patient won't return.
Unfortunately, that behavior has begun to affect you all, doctors.
You see, the result of your denial, of refusing to acknowledge or talk
about it, or DO anything about it, is that your patients are beginning
to treat you based on the bad treatment they've received from your
colleagues.  It's a vicious cycle.

99.9% of us patients begin with respect for our doctors. We maintain
that respect until it is violated in some way. Then we begin to
distrust all doctors, or at least it puts us on our guards.
Then, when we come to see you, doctor, you find a patient who is
guarded, and is unwilling just to accept what you tell us.  We may
come across to you angry or belligerent - not necessarily because YOU
did anything wrong; rather, because your colleague did not treat us
well or fairly. You won't listen to us or acknowledge the problems
we've had - so we have no platform on which to trust you.  Then,
because we learn we can't trust you either - we don't trust the next
doctor we see... and so the vicious cycle continues.

How can we stop it?  How can we correct the course and reestablish
trust between patients and doctors?

This post is a call-to-action. Doctors - it's time you take a stand
and begin talking to your colleagues about their behavior. If a
patient complains to you, then acknowledge (and clarify) the patient's
complaint, and  share that complaint with your colleague. Don't allow
your colleague to brush it off.  Support CMEs and coursework that
improve respectful communications. Ask your local medical society to
begin training. See if the AMA will address the problems your
colleagues are causing for you.

The days of accepting arrogance, disrespect, poor behavior, and even
worse - injury - from our physicians is gone, as far as we patients
are concerned. We'll do what it takes to work with you to improve the
situation - but we request (perhaps demand!) that you stop merely
putting a lid on that barrel of apples.

Because the rotten ones are creating such a stench that it is
affecting your career, and patients' lives.


http://patients.about.com/b/2011/01/03/a-call-to-physicians-its-time-for-you-to-week-out-those-rotten-apples.htm
* * *
More than 3/4 of CFS patients report a bad encounter with a doctor, and Dr. Klimas notes that she has some patients who went to a doctor with CFS and came out with PTSD due to the doctor's attitude toward them. 
 
Unfortunately, my state's Medical Board (and apparently others as well) have such limited funding that they only investigate the most extreme cases of malpractice.  I was told that since I hadn't died nor had the wrong limb amputated, they weren't going to do anything.  Never mind that "life as I knew it" was permanently changed and I'd never work full-time again.

Pending XMRV Study by Dr. Miller

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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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

Related CFS Info Resources

Visit www.cfsfacts.org and http://cfs-facts.blogspot.com/ for information about this disability.

Join us at
http://groups.yahoo.com/group/CFS_Facts/

Facebook page now accessible as:
www.facebook.com/cfsfacts

Chronic Fatigue Syndrome Debate Continues - NYTimes.com

 
Let's get some good comments on there to shout down the know-it-alls!

Retroviral integration and the XMRV provirus www.virology.ws

www.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 in chromosomal DNA of prostate tumors. Why does this result constitute such strong proof of viral infection?

Monday, January 3, 2011

Exhausted by Chronic Fatigue Syndrome, and Its Doubters

Exhausted by Chronic Fatigue Syndrome, and Its Doubters - NYTimes.com

"It feels patronizing when the medical establishment says the side effects are too risky and we should keep waiting," he said. "What that says to me is they have no idea whatsoever how sick people like me have been with this disease."

 
 

Sunday, January 2, 2011

Check out Reentry phenomena: Part 6

 
"This is a huge change, because for so long the only way that I could get through the days was to come to a state of acceptance of my limitations. I learned to appreciate the small pleasures – things as minor as reading a good book or watching my favorite TV show - because I truly believed that was all I was ever going to get out of my life. I oscillated between overwhelming depression, because I felt that my life would never be meaningful, and acceptance of the fact that I had to keep living, regardless. Now, as I look forward on a fresh new year, I no longer imagine myself locked away at home, never allowed the chance to chase my dreams."

Good News from NIH

Good News from NIH

We are pleased to announce that Dr. Dennis Mangan, with the National
Institutes of Health, has asked patient organizations for nominees of
patients to sit on the Steering Committee for the NIH State of
Knowledge Workshop on ME/CFS, scheduled for April 7-8. Among the
nominees, the NIH will be choosing at least two to serve.

PANDORA was one of the organizations approached. We then invited
input from many trusted long-time advocates and other patient
organizations. After confirming who was able to serve, PANDORA plans
to submit the following individuals as qualified candidates:
Mary Schweitzer
Pat Fero
Cort Johnson
Rebecca Artman
Brian Smith
Lee Meisel
David Adonailo
Marly Silverman
Brian Smith
Bob Miller
Alan Gurwitt

As far as we know, this is the first time the NIH has invited
patients to sit on this research steering committee. We are beginning
to see the changes we have been urging for decades.

We recommend all patients join us in commending Mangan for taking
this first step. By inviting patients to the decision-making table,
the NIH is now showing transparency and a willingness to be
responsive to patient concerns.

We look forward to more opportunities for patient influence.

Now is the time to unite.

Tina Tidmore
Communications Director
PANDORA, Inc.

CFS and Autism

Quote from Dr. Joe Brewer:


*....In one autism study, all mothers tested were XMRV
positive and many of them expressed symptoms of Chronic
Fatigue Syndrome or Fibromyalgia....*

How did XMRV jump to humans?

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Special Edition









For private members the Provisional PDF file is attached;
others can download the full text via the abstract site,
because the mentioned URL doesn't work.

http://www.frontiersin.org/virology/10.3389/fmicb.2010.00147/abstract




~jan van roijen




````




frontiers
IN VIROLOGY



Of mice and men:
on the origin of XMRV


Antoinette Cornelia Van der kuyl,
Marion Cornelissen and Ben Berkhout


Journal Name: Frontiers in Microbiology
ISSN: 1664-302X
Article type: Perspective Article
Received on: 20 Sep 2010
Accepted on: 26 Dec 2010
Provisional PDF published on: 26 Dec 2010


Frontiers website link: www.frontiersin.org

Citation: Van der kuyl AC, Cornelissen M and Berkhout B
(2010) Of mice and men: on the origin of XMRV. Front.
Microbio. 1:147. - doi:10.3389/fmicb.2010.00147

http://www.frontiersin.org/virology/10.3389/fmicb.2010.00147/abstract

s=1161&name=virology&ART_DOI=10.3389/fmicb.2010.00147

(If clicking on the link doesn't work, try copying and pasting it
into your browser.)




Perspective


Of mice and men:
on the origin of XMRV



Running title:

How did XMRV enter the
human population?


Antoinette C. van der Kuyl, Marion Cornelissen
and Ben Berkhout


Laboratory of Experimental Virology, Department of Medical
Microbiology, Center for Infection
and Immunity Amsterdam (CINIMA), Academic Medical Center,
University of Amsterdam,
Meibergdreef 15, 1105 AZ Amsterdam, The Netherlands






Abstract


The novel human retrovirus XMRV (xenotropic murine leukemia
virus-related virus) is arguably the most controversial virus of
this moment.

After its original discovery in prostate cancer tissue from North
American patients, it was subsequently detected in individuals
with chronic fatigue syndrome (CFS) from the same continent.

However, most other research groups, mainly from Europe,
reported negative results.

The positive results could possibly be attributed to
contamination with mouse products in a number of cases, as
XMRV is nearly identical in nucleotide sequence to endogenous
retroviruses in the mouse genome.

But the detection of integrated XMRV proviruses in prostate
cancer tissue proves it to be a genuine virus that replicates in
human cells, leaving the question: how did XMRV enter the
human population?

We will discuss two possible routes: either via direct virus
transmission from mouse to human, as repeatedly seen for
e.g. hantaviruses, or via the use of mouse-related products by
humans, including vaccines.
We hypothesize that mouse cells or human cell lines used for
vaccine production could have been contaminated with a
replicating variant of the XMRV precursors encoded by the
mouse genome.





Introduction


The xenotropic murine leukemia virus-related virus (XMRV) is
undoubtedly the most controversial human virus since its first
detection in human samples in 2006 [1].

XMRV infection still lacks a firm disease association, although
the virus was originally isolated from prostate cancer tissue
and subsequently detected in the blood of American patients
with chronic fatigue syndrome (CFS) [2], and in the respiratory
tract of patients with or without a respiratory tract infection
[3].

However, irregular XMRV detection [2-7] suggests that it is not
likely to be a major causal factor. First, we do not know
whether the biological reservoir has been investigated thus
far, as most studies focused exclusively on blood or prostate
tissue (summarized in Table 1).

Second, some pathogenic retroviruses do not cause much of a
viraemia, and experimental infection of macaques suggests
that this is also the case for XMRV [8].

In these monkeys, virus inoculation resulted in a low transient
plasma viraemia, followed by a wide dissemination of
replicating virus into various organs including spleen, lymph
nodes and gastrointestinal tract.

Third, sequence variation may exist, but such variant virus
strains could be missed by the PCR primers used.



Whether or not the virus causes disease in humans (reviewed
extensively by Silverman et al. [9], see also comments by
Coffin and Stoye [10], by Kearney and Maldarelli [11], by
Kaiser [12], and the cautionary note by Weiss [13]), and how
and when XMRV entered the human population - as the first
gammaretrovirus to do so - remains unclear.

To add to the ongoing discussion, we would like to propose an
alternative possible source for XMRV, human vaccines or other
biological products that were produced in murine cells.



How did XMRV enter the human population? One of the most
striking aspects of XMRV biology is the high sequence
similarity to mouse chromosal sequences that encode
endogenous retroviruses.

Initially, this raised the speculation that contamination with
mouse DNA could explain the presence of XMRV in human
samples.

However, the absence of other mouse-derived sequences,
combined with the ease of infection of human cells with XMRV
in vitro [14], and the detection of integrated proviruses in
prostate cancer tissues [15,16] indicated that laboratory
contamination with mouse products is not a likely explanation
for the origin of XMRV, at least for some of these studies.

If contamination does not provide an explanation, where does
the virus come from and how did it end up in humans?



Direct transmission of viruses from wild rodents to humans is
not uncommon, e.g. rodent hantaviruses and arenaviruses
spread through excrement via aerosols and are able to infect
nonrodent species, including humans [17-19].

Transmission of xenotropic murine leukemia viruses (XMLV's)
to humans is possible as human cells do express the XPR1
protein that is able to function as receptor for xenotropic and
polytropic murine retroviruses.

The human XPR1 receptor protein shows a preference for
xenotropic retroviruses, but is also able to mediate infection of
polytropic murine leukemia retroviruses (P-MLV's) [20].

Classical laboratory mice strains are hybrids between Mus
musculus musculus, M. m. domesticus and M. m. castaneus,
with around two-thirds of the genome coming from M. m.
domesticus [21].
X-MLV's cannot (re-)infect most of the laboratory mouse
strains due to polymorphisms in the XPR1 protein that disable
xenotropic virus entry [22].

Interestingly, the XPR1 genotype that prohibits X-MLV entry
was not found in wild-caught M. m. domesticus, suggesting
that it is a rare allele [23]. Indeed, extensive screening
identified 7 strains of laboratory mice strains containing a
permissive allele, of which at least three were susceptible to
XMLV and XMRV in cell culture [23].

In addition, the F/St mouse strain also produced infectious
XMLV together with a lifelong viraemia [23]. Many feral mice
species, e.g. M. dunni and M. spretus, are also susceptible to
infection with X-MLV's [20,22,24].

Evidence on M. m. castaneus is conflicting, with some
reporting a non-functional and others a susceptible XPR1
phenotype [22,25]. The ability of XPR1 to function as a
receptor for xenotropic viruses was found to depend on the
identity of two amino acid residues [22].





The origin of XMRV?

Every mouse genome contains multiple copies of endogenous
MLV and has thus the capacity to express viral RNA and
possibly viral particles.

Endogenous MLV transcription has been described for many
tissues and several mouse strains. It remains unclear if and
when virus particles are generated and whether these particles
are actually excreted.

Zoonotic transmission of these viruses could have occurred in
the many million years that mice and men have shared the
same environment.

But current XMRV sequences isolated from human samples do
closely mimic mouse genomic sequences, thus suggesting a
low number of replication cycles since zoonotic transmission,
which is thus likely to have occurred recently.

The mutation rate of MLV's is not different from other
retroviruses [26] (although its replication rate may be low),
implying that if the transmission had taken place a long time
ago, more nucleotide substitutions should have become fixed.

Phylogenetic sequence analysis, however, revealed very short
branches for XMRV and the mouse xMERV sequences on
chromosomes 7 and 9, indicating that very few mutations have
occurred since transmission [1,3,4].

In addition to the loci on chromosomes 7 and 9, a BLAST
search using the NCBI sequence database
(http://blast.ncbi.nlm.nih.gov/Blast.cgi) retrieves loci on
mouse chromosomes 4, 11 and 12 with a much higher
(98-100%) sequence identity to XMRV-gag nucleotide
sequences (e.g. GenBank accession numbers AC124739,
AY349138, and AL627314).

Blasting whole genome XMRV sequences recovers very similar
sequences with large stretches of sequence identity on mouse
chromosomes 4, 5, 13 and Y, especially for the 3' end of the
XMRV genome.

These results suggest that the genome of human XMRV is
present, albeit in two parts, in the mouse genome with
effectively no nucleotide changes. Even in slowly evolving
retroviruses like foamy viruses, 100% sequence identity is only
seen in animals with close contact or humans that have been
bitten by an infected primate, suggestive of direct
transmission, while intraspecies variation is generally around
85-95% for the pol gene [27-29].


A recently described locus [23] on chromosome 1 of M.
musculus (GenBank accession number AC115959) contains a
provirus that is 92% homologous to XMRV from the 22Rv1 cell
line (GenBank accession number FN692043) over its complete
genome length. This provirus, Bxv1, is mainly found in
Japanese M. molossinus (a natural hybrid of M. castaneus and
M. musculus) and is highly expressed in some laboratory
mouse strains [23].

However, the Bxv1 provirus is less likely to be the source of
XMRV, as its similarity to XMRV is much lower than that of
other murine loci.





XMRV is a novel recombinant retrovirus

XMRV is actually a recombinant virus, resembling
polytropic-endogenous sequences for the 5' half up to
approximately the middle of the pol gene and
xenotropic-endogenous sequences for the 3' half of the
genome, which includes the env gene (see: [30]).

This recombination event is likely to have occurred in the
mouse before transmission to humans. At least one
recombinant provirus, Bxv1, is already found in the M.
musculus genome [23]. This locus is heterogeneous in
subspecies of M. musculus, suggesting that it represents a
recent integration.

Recombination rates are high for all retroviruses because they
package two copies of the RNA genome in virions, which drives
subsequent mixing of sequences during the reverse
transcription process.

Recombination also enables the generation of
replication-competent viruses from defective endogenous
proviruses. Recombination can also extend the viral host range
(cell type and/or host species).

A virus carrying a xenotropic env-gene is more infectious for
human cells as the human XPR1 protein has a preference for
xenotropic murine envelope proteins over polytropic ones.

The replication-competent endogenous cat retrovirus RD-114 is
an example of a recombinant virus expressed from endogenous
sequences. It combines FcEV gag-pol genes (FcEV is an
endogenous retrovirus of cats) and a BaEV env-gene (BaEV is
an endogenous retrovirus of African monkeys) [31].

RD-114 is expressed by all species of the genus Felis, but not
in other felines, and probably originates from a cross-species
transmission of BaEV, followed by a recombination event and
subsequent germ-line integration.





Are mouse-derived biological products the source
of XMRV?

Detection rates of XMRV in populations are extremely variable,
with 0-67% positivity in patients and 0-3.7% in healthy
controls [2-7], suggesting that virus prevalence and thus
exposure could vary significantly with geographic location.

Although the virus could possibly be transmitted from feral
mice to humans in a natural setting, followed by a rapid
dissemination in the human population, the high XMRV
sequence similarity on two continents would suggest an
alternative transmission route.

Likely sources of XMRV are mouse-derived products. Some
mouse genomes encode complete copies of X-MLV's with at
least 92% similarity to XMRV; segments with even higher
homology are present on other locations, and could result in
novel recombinant viruses.

So, X-MLV's that closely resemble XMRV could then be
produced from these loci and virions could be excreted from
mouse tissue or cell cultures.




Are X-MLV's produced in mice?

MLV's, including xenotropic sequences, are actively transcribed
in mouse brain [32], and mice can produce virus particles of
different MLV classes [33]. In vivo recombination between
endogenous and exogenous polytropic MLV's has also been
reported, resulting in viable viral offspring capable of infecting
a variety of species [34].

The Bxv1 locus in M. musculus molossinus is an example of an
endogenous xenotropic/polytropic recombinant MLV that is
expressed and gives rise to a life-long viraemia in laboratory
mice of the F/St strain [23].


Although there was no evidence of X-MLV transmission to
human embryonic stem cells expressing XPR1 after
cocultivation with murine cells expressing X-MLV particles in a
single report [35], this does not imply that transmission may
not have occurred on another occasion.

The prostate carcinoma cell line 22Rv1 is a popular research
tool because it contains approximately 10 integrated copies of
the XMRV provirus and it produces infectious virus [36].

The origin of the 22Rv1 cell line may represent a recent
transmission case as a carcinoma was grafted in nude mice to
establish this permanent cell line [37]. The complete 22Rv1
provirus has 99% sequence similarity with other XMRV isolates
[38].

Possibly, the 22Rv1 carcinoma cells were infected with XMRV
by mouse cells surrounding the tumour graft [36].




Vaccines, viruses and contamination


One of the most widely distributed biological products that
frequently involved mice or mouse tissue, at least up to recent
years, are vaccines, especially vaccines against viruses.

Some, for instance vaccines against rabies virus [39], yellow
fever (YF) virus [40], and Japanese encephalitis (JE) virus [41],
consisted of viruses that were cultured on mouse brains.

Such vaccines were in use from 1931 (YF vaccine) until now
(Japanese encephalitis vaccine, licensed in Japan since 1954).

For rabies virus, early vaccines were mainly of goat or sheep
nerve tissue origin. In addition, suckling mouse brain-derived
rabies virus vaccines were used in South America and France
[39].

No mouse-derived rabies vaccine was ever licensed in the USA
[42]. Live-attenuated YF vaccines were originally also grown
on mouse brain, but an YF vaccine grown on chicken eggs
(named 17D) became available in 1937, and was since the
vaccine of choice in the America's.

In 1962, contamination of the 17D vaccine with oncogenic
avian leukosis virus was detected both in England and in the
USA, but fortunately no excess of cancer incidence among
vaccinees was reported [40]. In France, the mouse-brain
derived YF vaccine was discontinued as late as 1982.


Although being the most effective means to prevent infectious
diseases and to safe lives, serious contamination problems
involving vaccines have occurred [43].

Contamination with unrelated viruses such as the presence of
hepatitis B virus (HBV) in yellow fever vaccine preparations
stemming from the use of human serum for stabilization, and
simian virus 40 (SV40) and foamy viruses through the use of
monkey cell cultures [43].

Some vaccine viruses are inactivated before use, hopefully
also inactivating any contaminating virus particles, but the
contaminating virus may be more stable than the vaccine
virus.

For instance, SV40 is highly resistant to inactivation [44].

Endogenous retroviruses constitute a distinct class of
contaminating viruses, as these viruses are encoded by all
cells of a certain species, and therefore cannot be avoided
even through rigorous screening [45].

Contamination with endogenous avian leukosis viruses is a
major problem for vaccine viruses grown in chicken embryos or
chicken embryonic fibroblasts [46]. Infectious cat endogenous
RD-114 virus has been found in several veterinary vaccines
produced in cat cell cultures [47,48].





XMRV and monoclonal antibodies.

Apart from vaccines, other mouse-derived biologicals could
have been a source of XMRV in the human population.

Monoclonal antibodies present a modern treatment for many
cancers and other diseases including cardiovascular disease,
psoriasis and auto-immune disorders (for a review see: [49]).

The first monoclonal antibody, OKT3 (to be used against
transplant rejection), was approved by the FDA in 1986.

The market for monoclonal antibody therapy has been
expanding rapidly after the year 2000. Initially, murine
antibodies produced by the hybridoma technique were used
[50], but these have been largely abandoned because of
(sometimes severe) allergic reactions.

The murine antibodies were often replaced by humanised
antibodies mainly produced in transgenic mice. Monoclonal
antibodies generated in mice could possibly be polluted by
XMRV and related viruses.

Platinum Taq polymerase from Invitrogen Corporation,
prepared using mouse monoclonal antibodies, is known to be
frequently contaminated with mouse DNA, which can generate
falsepositive PCR amplifications in combination with X-MLV or
XMRV primers [51].

It is less likely that monoclonal antibodies from mice are a
major source of XMRV in the human population as they are in
use only recently, but they could provide a future supply of
mouse-derived viruses.

Although monoclonals are treated with detergents before use
in patients, virus inactivation may not be complete, especially
as protein function should be conserved. And if retroviral
particles containing RNA genomes are copurified with the
antibody proteins, the absence of mouse DNA may give a false
impression of safety.





XMRV contamination of cell lines?

It is possible that XMRV particles were present in virus stocks
cultured in mice or mouse cells for vaccine production, and
that the virus was transferred to the human population by
vaccination.

The sequence homogeneity of all XMRV isolates known today
suggests that only a single or very few transmissions have
occurred, which is consistent with the proposed vaccination
route.

Nowadays, vaccine batches are carefully checked with
sensitive PCR assays for the presence of contaminating
retroviruses, but this screening was not performed in the early
years of vaccination ([52] see also [48]).

Apart from vaccines, other biological products have been
generated using mice or mouse cells. Alternatively, laboratory
contamination with a mouse-derived virus of cell lines used for
e.g. vaccine production could have occurred [53-55]. The virus
could then unintentionally have been transmitted to the
human population.

Nowadays, many vaccine strains are grown in human diploid
cell lines [56], which are susceptible to MLV infection. A recent
report detected other MLV-related sequences in CFS patients
and healthy controls from North America [57], suggesting that
more MLV strains may have been transmitted to the human
population, possibly in a similar fashion.

However, solid evidence that these polytropic MLV sequences
represent replicating virus is currently lacking.




Where was XMRV transmitted?

XMRV was found in samples from CFS patients in North
America, but not in Europe. The virus was detected in prostate
cancer tissue from patients on both continents. There is a
single report with negative results from China [58], and a
single report with one positive sample from Mexico [59] but
none from other areas of the world, leaving many questions
about the true distribution of XMRV in humans.

Prevalence of XMRV from North American studies varies
between 3.7-67% in four studies with two other studies
reporting negative results (one in CFS patients and healthy
controls [6], and one in HIV-infected patients receiving
antiretroviral therapy and untreated men at risk for HIV
infection [60]).

In Europe, XMRV was detected in two studies from Germany
[3], and in one from The Netherlands [61], but not in the
United Kingdom [5,62], France [63], Denmark [64], and two
other studies from The Netherlands [7,65], although the
nature of the samples analysed differed between studies.
Table 1 summarizes the results from these studies.




XMRV sequences from Germany and North America exhibit very
little nucleotide divergence, suggesting that they descended
from a common ancestor relatively recently.

A close inspection of the phylogenetic trees obtained with
XMRV-gag sequences [3,4] suggests that XMRV sequences
from the USA are closer to the common ancestor than German
XMRV sequences, although the trees are not optimal due to
the high sequence conservation.

Being closer to the most recent common ancestor (MRCA) is
suggestive of an older virus. Possibly, XMRV was transmitted
from mice to men in the USA, and soon after this event
introduced into Germany.

Germany had close connections with the USA after World War
II, with large numbers of military personnel (and their
families) stationed in Germany from 1945 till present times.

In 2006, there were still 57.080 American army employees
distributed over more than 200 locations in Germany, mainly in
the south and west of the country
(www.defense.gov/pubs/BSR_2007_Baseline.pdf).

US military personnel are highly vaccinated, e.g. virtually all
recruits were vaccinated with YF vaccine in 1941- 1942 after
the outbreak of World War II [40].

A massive outbreak of jaundice, with at least 26,000 cases in
the Western region of the USA, was due to the use of human
serum contaminated with HBV in the vaccine (see [40]).

Recently, massive smallpox vaccination of the US army
personnel has been carried out [66]. XMRV infected Americans
could subsequently have introduced the virus into Germany.




Spread of XMRV

The combined results suggest (1) that XMRV was recently
transmitted from mice to humans, either from a single source,
or at least from a single (sub) species of mice, and (2) that all
XMRV-positive individuals known today were infected with this
newly-emerged virus only recently, as a very high sequence
identity is normally only seen after a direct retrovirus
transmission.

Whatever the mechanism of XMRV cross-species transmission
from mouse in humans, the possible spread from human to
human forms a major health threat.

Sexual transmission was initially proposed [67], but XMRV was
not detected in seminal plasma from HIV- infected men [65].

The detection of XMRV fragments in the respiratory tract [3]
suggests that the virus may be transmitted by saliva, although
RNA concentrations were low. Transmission through saliva,
mainly by biting, has been reported for most retrovirus genera,
including ecotropic MLV's [68].

Another major threat is transmission through blood products
as infectious virus has been cultured from blood cells [2].


Up till now, all patients with detectable XMRV have been
adults, the majority of them middle-aged or older (mean ± 55
years).

A study in 142 children with a diversity of pathologies,
including respiratory diseases in France revealed no XMRV
infections in that age group [63], although the incidence of
XMRV in France is not known.

Another study in autistic children from the USA and Italy was
also negative for XMRV [69].

XMRV can likely be acquired at any age, and then probably
establishes a chronic, latent infection like other retroviruses.
Therefore the age of XMRV-infected individuals does not
provide an unambiguous clue about when XMRV entered the
human population.




Conclusion


In conclusion, the most likely mode of XMRV transmission
points to mouse-derived biological products, but it cannot
formally be excluded that the virus was once transferred from
feral mice to humans.

The latter scenario is less likely as it would imply that a very
rapid spread in the human population must have occurred to
explain its presence on two continents. In this scenario, the
extreme sequence similarity among XMRV genomes, both
between and within individuals, would argue that the virus
replicates at very low levels.

Among the biological products, vaccines that were produced in
mice or mouse cells are possible candidates that warrant
further inspection. If XMRV was introduced in the human
population through the use of biologicals, a background level
of the virus in the human population, possibly varying with
geography or age group, would be expected.

Such a low level presence would then also explain the
(absence of) detection of the virus in different studies, as
well as its controversial association with disease.



We hope that this hypothesis will spur further discussion and
help to resolve the many remaining XMRV questions.




Acknowledgement

We thank Hans Zaaijer for insightful discussions and
proofreading of the manuscript.




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````````



Copyright statement: © 2010 Van der kuyl, Cornelissen and
Berkhout. This is an openaccess article subject to an exclusive
license agreement between the authors and the Frontiers
Research Foundation, which permits unrestricted use,
distribution, and reproduction in any medium,
provided the original authors and source are credited.
















Chronic Fatigue Syndrome: Old Year/New Year Reflections

Chronic Fatigue Syndrome: Old Year/New Year Reflections
By Jody Smith December 28, 2010 - 9:25am

It's a universal impulse at this time of year to look back and to look
forward. This week closes out the old year, and opens the new.

It's the perennial Old Year/New Year reflection. Looking in two
directions at once.

People who are chronically ill do this too, at least the ones able to
think coherently enough for long enough periods. Some years, that
wasn't me.

Some years, I spent the weeks after Christmas in bed, sleeping chaotic
hours around the clock. Dozing over an unread book. Staring
uncomprehending out a window.

But not this year. This year I'm quite coherent, thank you. And I am
doing the Old Year/New Year reflection.

We chronics ask many of the same universal human questions that
healthy people do. Then there are other issues unique to us.

1.Was I happy last year? Will I be happy in the coming year?
If the year winding down has been rough, it can be hard to hope that
something better will come. But ... hope anyway.

2.Was I healthy last year? Will I be healthy this year?
For some of us bad health has shrouded our past for more years than we
can count. Some chronic lives have been like a Gothic tale of horror.
A brand new year up ahead may inspire hope and anticipation, or fear
of falling off a new precipice.

3.Have I moved ahead this year? Or have I lost ground?
I can rarely make a blanket statement as to whether life has been bad
or good. I find it helps to look at different aspects of my life. And
if anything has improved, my preference is to take that and fan its
flames of hope, for all it's worth.

I've been viewed as being Pollyanna-esque or prey to wishful thinking.
But I've already lost a lot to Chronic Fatigue Syndrome. I'm not
letting it take anything more from me than I can help. And that
especially includes my ability to hope.

4.What new things am I hoping for in the coming year?
Some of us with CFS are hoping for a doctor who is sympathetic and
knowledgeable. We're all hoping that there will finally be more than
just a small handful of devoted heroes who've been investigating CFS
with little or no financial support.

The full article can be read here:
http://www.empowher.com/chronic-fatigue-syndrome/content/chronic-fatigue-syndrome-old-yearnew-year-reflections

New Perspective on Doctors Attitudes Toward Fibromyalgia & Chronic Fatigue Syndr

Note: One issue involved is the increasingly prevalent attitude in
medicine is that if there is no easily identifiable reason for
symptoms, then patients should be firmly told there is nothing wrong
in order to prevent "medicalization" of so-called "normal" feelings
and presumably iatrogenic harm by doctor. The reasoning is that if
doctors pay attention to presumably non-medical issues they will
encourage patients to believe they are ill when presumably they are
not. The dangers inherent with this approach are noted below. As well,
for those old enough to remember, advice columnist Ann Landers she
always said there are as many doctors on one side of the bell curve as
the other.

New Perspective on Doctors Attitudes Toward Fibromyalgia & Chronic
Fatigue Syndrome
Wednesday December 29, 2010

When you talk to people with fibromyalgia and chronic fatigue
syndrome, it doesn't take long to collect horror stories about doctors
and how many of them treat us. They don't believe us; they think we're
lazy, crazy or drug seeking; they dismiss our diagnoses and refuse to
test or treat us.

I recently had an eye-opening experience -- it's not just us!

I was at a holiday get together talking to a 30-year-old friend and a
50-something woman who happens to be a hospital nurse. The younger
woman had recently had a hard lump in her throat that caused problems
swallowing. It was keeping her up at night and making her afraid to
eat. A physician's assistant suspected a goiter and checked her
thyroid levels. They were normal, so the PA told her she'd just have
to learn to live with it and flat-out refused to do anything else. She
went to another doctor who said it was damage from acid reflux. Had
she just lived with it, she'd have ended up with major problems from
the acid eating away her esophagus.

The nurse, who'd just recovered from knee surgery, said that when she
went to the doctor and told him she'd fallen and hurt her knee, he
told her it was just her arthritis pain. When she told him it wasn't
and insisted something was damaged from the fall, he accused her of
drug seeking. To shut her up, he agreed to an MRI and a referral. She
said the specialist had surgery scheduled before she even got to his
office, based on damage revealed by the MRI.
While it's disheartening to think that so many people in the medical
field routinely treat their patients so abysmally, it was good for me
to hear these stories.
As a group, we may attract more of this poor
treatment than other people, but we're not alone. I feel like less of
a target now and more like just one more person who's frustrated with
the state of the medical profession.

Do you know "other" people who've run into these attitudes? Does it
help to know that they encounter the same problems? Or is it just
frustrating to know that we have so many lousy health-care workers?

Comments can be left at:
http://chronicfatigue.about.com/b/2010/12/29/new-perspective-on-doctors-attitudes-toward-fibromyalgia-chronic-fatigue-syndrome.htm

Alan Rein on XMRV

http://www.virology.ws/2010/12/26/twiv-113-alan-rein-on-xmrv/

TWiV 113: Alan Rein on XMRV
26 December 2010

Hosts: Vincent Racaniello, Alan Dove, Rich Condit, and Alan Rein

On episode #113 of the podcast This Week in Virology, Vincent, Alan,
and Rich discuss the retrovirus XMRV with retrovirologist Alan Rein of
the National Cancer Institute.

(Player located on webpage)

The Mouse That Roared

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Send an Email for free membership
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  >>>>> Help ME Circle <<<<
>>>>    21 December 2010  <<<<
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Special Edition








http://bit.ly/h5jbJy




CFS Patient Advocate



Monday, December 20, 2010



The Mouse that Roared*




Many of the participants of the Blood Study group
advisory committee meandered off to have a little
dinner and feel good about themselves.

Their self-assessment mirrors a comment overheard
recently in a NYC coffee shop: "I feel good about
myself and I think I do a good job." The rest of us go
back to our life of illness or illness support. It is a
grim life, made more difficult by having to go back to
confront illness reality after a day with these FDA
losers.

It is this disconnect that is really irritating - the
disrespect for this illness that individuals like Coffin
and Stoye display publicly.

They are playing their little games, disguised as
science - and their successes in their careers come at
the expense of patients. They do not give a shit.

This is what I dislike. It is the contempt and the
disregard and the ignorance of the consequences of
their actions. It is in this way that they are modern
people - self-pleasurers.


On this December 20th, a story from November 2009
has taken center stage and has become a
"realization".

A year ago a well-known cancer virologist was approached in the halls of the NCI by another virologist and advised to "distance himself from the WPI" - that "they (unknown elements) were going to take out the WPI". Today this story resounds more convincingly - and gives some credibility to the lies that have been circulating over the last few months.


The news today was not good for ME/CFS patients -
not good for their health. For the moment the largest
exposure (what is most suspicious) of these "smoke
'em out" retro-virology papers is the timing.

These scientists chose to have their XMRV
contamination studies released five days before
Christmas, a time when ME/CFS patients are under
the greatest stress of the year.

ME/CFS or XMRV-related illness is a stress-related
disorder of the first magnitude, and many patients,
like my daughter, go down for the count during this
time, and take weeks to recover.

It is a very sad and painful time for ME/CFS families
and friends. ME/CFS is a very nasty illness with a
great fragility and unpredictability to it.

These virologists, in their little ivory towers, can only
think of these patients, as "complainers", resenting
the "harassment" email activity of these desperate
patients, now desperate for twenty-five years and
counting.


It was quite noticeable in the conversation with Dr.
Stoye the other afternoon that he has zero idea of
the outlines or the seriousness of this illness - and
no desire to find out, preferring to splutter and
grimace instead. (Can one imagine that being true
with Salk and polio patients?)

Complete disregard can also be placed at the feet
of the stuff shirt Dr. Coffin and the haughty and
diffident Dr. Huber, neither of whom show the
slightest knowledge or interest in the reality or
character of this patient group.

They are too busy talking about themselves,
preening and mincing about.



In the unlikely event that these studies knock out
the association with XMRV, we have a larger moral
issues here - a moral issue parading in the name of
science.

These scientists in their "need to know" and "to win"
are perfectly happy, in their deep ignorance, to
trample on the feelings and spirit of this patient
group. At the very core, they are an unfeeling,
heartless bunch of bastards. Is this what science has
become?


This disregard is only the most obvious example of
the evil that is taking place now. It was obvious at
the Blood Study Group Advisory meeting that there
are larger, even unknown, issues here that various
sides are contesting furiously - with the gloves off.

At times it is difficult to determine if this is normal
academic infighting, where scientists fight to the
death over limited or non-existent stakes.

Or whether, on the other hand, there are much larger
issues here - issues of proprietary rights, influence,
credit, power and, of course, MONEY.

For a long time now it has seemed that an aggregate
grinding sound of anxiety and exacerbation has filled
the hallways of university labs in the US and the UK
over the WPI discovery. This has been written about
before on this blog. Now comes the serious push to
discredit ME/CFS.


It is not believable for one minute that Coffin or
Stoye or Huber or any of them believe that there is
not a retrovirus associated with this illness.

They want part of the action and they need to knock
down the WPI and Mikovits to get it. Scientific rigor
is necessary, but these three do not qualify for this -
and engineered studies do not count.

These, and others, ask "questions with intent" -
fueled by jealousy and malice. When one
experiences an exchange like the one with Stoye you
know something unspoken is at stake. Some of this
sounds perfidious.


This effort to discredit has been going on since
October 2009 - and probably before. (Early on,
unnamed others (so-called friends), coveted Dr.
Mikovits job and tried to unseat her. Who knows
what else happened to sandbag the WPI- things like
researchers stealing proprietary data and publishing
it as their own - these kinds of disturbing actions.)


The first manifestation of "difference" - in hastily
organized papers in the late winter of 2010 - was to
knock out the Science paper.

A number of people went down for the count in this
exchange, including our friend Jonathan Kerr. These
highly publicized negative worthless papers were
dragged out over the summer.

Finally the Lo/Alter paper was released and at this
point things began to get serious. (Dr. Alter seems
to have unwittingly participated in this plot to
dismantle the October study.) In other words the
stakes were raised and the bitter lines consolidated.


Something big is at stake here and the struggle for
control is not a friendly one. The opponents of the
association of MLV-related viruses are intent on
doing one of two things.

The first possibility is to completely knock out and
bury the association that a retrovirus could be
attached to this illness and other unknown
illnesses.

The second is that they want to blunt the XMRV
connection, bury it, and wrest control of the entire
issue for themselves.

From a scientific point of view the first option
doesn't make a whole lot of sense. The ferocity of
the fighting indicates that the second possibility is
more probable.

Large powerful elements want to wrestle this
retroviral connection to neuro-immune and other
illness from the WPI and their collaborators.

The negative consequence of this for the patients of
ME/CFS is not calculated in their bargains.


For the last few months, and longer, every step has
been taken to isolate the WPI and starve them to
death. All funding requests have been turned down
based on the idea that the XMRV association is
experimental. (Unfunded studies have to be
completed to apply for funded studies.)


The release of these papers and its immediate
uptake by the UK and soon the US press (think of our
vaunted NY Times and of these "riled up" CFS
people) indicates that the time was calculated for
greatest exposure and to neutralize the level of the
response.
It was a good trick and one has to admire it for its
connivance/deviance. These contamination studies
made it very quickly into the major news media,
especially in the UK.

Someone was waiting for them - it was a set up.
Expect more of the same to follow from the US
press. This makes for a good story, the continued
abuse of this patient population, now in the name of
science. This was the hard take-out that has been
expected for some time now. This is just another
chapter.


The WPI has always been weak on the
communications/public relations front. They are
understaffed and poorly funded, particularly after
opening their marvelous new building - an act that
only further needled their enemies.

At the moment the WPI is unprepared to strike back
on this recent take-out, but things are going to
change. As they gather forces and consolidate the
means of aggressively pushing their agenda, the roll
back will happen.


Let us imagine for a moment that the worst has
occurred (the doomsday scenario) - that the XMRV
association with ME/CFS has been broken and
smashed. Let us imagine the unimaginable, that the
UK whatshername and Coffin and Stoye have bested
the valiant Dr. Mikovits. Is this the end?


We have to remember that it was the WPI that got
us here. With all due respect for Klimas and
Natelson and others, the WPI has gone farther and
faster in their research - and without much
institutional research money.

Try to remember what it was like before the Reno
conference in March 2009. At this point, a direction
was set - entirely by the WPI and their then Medical
Director Dan Peterson, and it has been a fast ride
since then.

Can anyone imagine that this will change? The XMRV
was an unexpected gift - and it is a gift that is going
to keep on giving. If it hadn't been for the October
2009 paper none of this additional broad-based
research - Singh, Hansen, Bell, Cheney, Klimas,
Montoya, de Meirleir - would have occurred.

Whatever else happens the Whittemore Peterson
Institute got the ball rolling, and now it is
impossible to put the genii back in the bottle.
As the
changed Dr. Alter said, if it is not XMRV, we have to
find what it is. And then there are all the immune
panels and cytokine studies. Soon it will be on to
treatment trials.


One thing is assured. This struggle will continue –
and please imagine the bad guys losing. Think of
what it would really be like if the ME/CFS community
had to rely on these suckers – Coffin, Stoye, Huber,
whatshername – to do anything for us. We would be
finished.





````


Word comes late in the day of a comment
on these five studies from the
researcher/clinician Dr. Kenny de Meirleir
(published on Merutt.wordpress):



"The contamination by mouse material was excluded
in our study, that of Lo and that of Lombardi et al.

We are not using PCR as a basis of the test but
human prostate cancer cells that do not express
RNase L so the virus from patient's blood can grow
in it.

We also sequence the virus and I can assure you it
is not mouse material.

Governments and insurance companies are horrified
by the idea that there is a new retrovirus out there
that has infected 10 times more people than HIV up
to date.

My preliminary data show that the virus does not
grow in culture anymore after Nexavir + GcMAF
although the procedure was identical to the
pretreatment culture.

In the next months more will come from our side. A
study with healthy blood donors, ME patients who
got ill immediately after blood transfusion and ME
patients who gave blood after they got ill will be
published in the first half of 2011.


What these 5 are doing to the patients is a crime
against humanity.



Kenny De Meirleir"






```````



* The Mouse that Roared - 1957 UK film starring
Peter Sellers, where an impoverished backward
nation declares a war on the USA hoping to lose, but
things don't go according to plan.