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Wednesday, October 21, 2009

#23~ BRAVO to Dr.David Bell on XMRV

Dr. David Bell on XMRV Research: 

"Now We Can 

Get Down to Business"

by David S Bell, MD, FAAP
October 21, 2009

This information is reproduced with kind
permission from the October 2009 issue of
Dr. Bell’s free Lyndonville News e-newsletter.
It was published shortly after research linking
the “XMRV” retrovirus and ME/CFS went live
in the journal Science on October 8.
Holy smokes! 
Just when I want to retire
this comes along. How am I going to 
get any peace and quiet?

Here is the Lyndonville News coming out
within a week of a paper being published,
and already what I have to say is old news.
Probably everyone reading this newsletter
has been on the edge of their seats
listening to NPR, CBS, Reuters, and so on.
The CDC has already said that it isn't
going to pan out. It is my guess that the
media coverage will intensify because
this is really big news.

First of all, congratulations…

To Drs. Judy Mikovits, Vincent Lombardi,
Robert Silverman, Dan Peterson and the
rest of the authors. And a special
congratulations to the
Whittemore Family Foundation, and the
Whittemore-Peterson Institute for putting
this together. For many years ME/CFS has
been limping along on complex science that
points to mechanisms of illness that most
physicians have ignored.
Limped along with skeptical specialists,
medical establishments, government agencies.
Limped along despite attacks by disability
Now we can get down to business.

In this issue of Lyndonville News I will briefly
repeat what has been reported in the
Science paper and the press releases.

But most of all I want to predict where this is going.

I am using the "force" here. 
I have no special or inside information
from the Whittemore-Peterson Institute.
They have to be cautious and circumspect.
I don't. I am an old man sitting on my porch
rocking chair, desperately trying to retire;
I will say what I think is true.

By the way, people are already asking me
if this is related to the retroviral sequences
we published in 1991. Please don't ask me,
history will sort this stuff out; the focus and
attention now needs to be upon the
current work, mechanics of symptom
generation, epidemiology,
and treatment implications.

The focus needs to be upon the
Whittemore-Peterson Institute, and other
scientists who will become involved in
replicating the material and moving on
from there. When I was on the
CFS Advisory Committee we recommended
that ME/CFS centers be established.
That advice fell on deaf ears.

But now, before the Whittemore-Peterson
Institute has even opened its doors, we get
privately-funded science that will end up
changing the world.

Literature Review: XMRV in Science

Dr. Judy Mikovits of the Whittemore Peterson
Institute in Nevada and colleagues at the
National Cancer Institute and the
Cleveland Clinic have published a paper in
the prestigious journal Science, an article
entitled "Detection of an infectious 
retrovirus XMRV, in blood cells of 
patients with chronic fatigue syndrome"
- Online 8 October 2009;
DOI: 10.1126/science.1179052.
[To read the full text article,
go to the WPI website and click on
"View Reprint."]

• The virus, an infectious gammaretrovirus,
  XMRV (for Xenotropic Murine RetroVirus),
  was found in the blood of 68 out of 101
  chronic fatigue syndrome patients, by
  looking for DNA.

The same virus was present in 
   only 8 of 218 healthy people.

This virus is known to be "oncogenic,"
  meaning that it can cause cancer. 
  At this point only a link has been 
  established between XMRV and CFS.

XMRV was first linked to human disease

Cleveland Clinic, in patients with prostate
cancer who also had a defect in the
RNAse L antiviral pathway. As this pathway
has been known to be abnormal in CFS(1,2),
it was reasonable to search for the virus
in CFS. In their first paper on XMRV, it was
linked with this RNAse L defect,
but this has since been revised(3).

The XMRV DNA is present in 67% of cases,

and few controls. (More data show greater
than 95% of the more than 200 ME/CFS,
Fibromyalgia, and "Atypical MS" patients
tested positive for XMRV antibodies,
as per their website -
High levels of XMRV proteins were expressed,
and they were able to produce infectious
particles in culture.

In the paper, the authors are cautious,

stating that the finding only shows a link
between the virus and CFS, and does not
prove that the pathogen causes the disorder.

Personal Comment: XMRV as

"The Puppet-master Virus"

Is CFS a single illness or a heterogeneous

collection of fatigue-causing illnesses?
This question has been important for
25 years and needs to be addressed at
the beginning of the XMRV era.

In some senses all illnesses are 

"heterogeneous." There is the viral agent
and there is the host. No two hosts are
identical, and even identical twins have
"epigenetic" differences. Therefore it is 
inevitable that phenotypes 
(the way an illness appears in a person) 
may vary. Poliovirus is a good example.
One agent causes a mild flu-like infection
in one person and paralysis in another.
But polio should not be thought of as
a heterogeneous illness.

XMRV may "cause" CFS because it allows

other agents (EBV, Lyme, enteroviruses, etc.)
to be expressed differently. After all, XMRV
is a retrovirus, and look at the variations in
phenotype in other known human retroviruses.

The lymphocytes expressing XMRV were

"activated," implying that this agent was not
just quietly lurking in cells, as some agents do.

The "Two Hit" Theory has been circulating

                     for 20 years.

• One hit is an immune altering silent hit,

And the second is a herpes virus
   or some other agent.

Actually herpes viruses can carry 

retroviruses along, so here is more work
for the Whittemore-Peterson Institute to do.
John Coffin wrote 
"One New Virus - How many Old Diseases?"(4)

I would think of XMRV as the "puppet-master":

It is known to be linked to prostate cancer;

It lurks in the shadows and pulls certain
strings causing cells to become malignant.

Perhaps it pulls another string to cause
EBV to be more active, or Lyme, 
or enterovirus?

Another string to alter RNAse L?

Many, many questions open up.

But we already know several things.

First, ME/CFS is not like your average
infection, pneumonia for example.
This is a really complicated disease.
But AIDS was complicated and now is
pretty well figured out.

Secondly, we know the clinical aspects
of ME/CFS, putting aside the arguments
over what definition you use. And the 
good news: After following patients for 
20 years, not many are getting cancer.
But there is bad news; cancer takes 
a long time to get going.

But the really good news is that if XMRV

is the puppet-master of ME/CFS, it 
conceivably could be very treatable. 
Theoretically, more treatable than HIV.
Lots of work to do.

The politics of ME/CFS are daunting.

But now may be the time to forge ahead
and get something done.
Congratulations again to the authors 
and the Whittemores. 
It is time for the CDC and the NIH
to be constructive and do some science.

Lyndonville Research Group:

Let’s revive the Lyndonville research 

group again (gasp). 
I would like to test the original Lyndonville
kids for XMRV, and if any of you reading 
this became ill in the Lyndonville, 
New York area around 1985, were 18 or 
under at the time, and want to be evaluated,
please write to me at  
Even if you are feeling great now.

Patient's Observations

1. I feel like I am drowning, and what I

ask is if you can recommend a good doctor
that actually takes...Medicare. not
understand why average doctors seem to
know so little about this...I am on disability;
My resources are limited. I would have to
do this all out of pocket.

Response: How can I answer these

questions that I have now seen for 25 years?
I would say that I feel badly for you,
or shut my eyes and move silently on.
I have been accused of being too optimistic
in the past, and certainly those criticisms
were correct.

But now things are different. Now I am

not going to be too optimistic - 
I think XMRV is going to turn out to be 
the "cause" of ME/CFS, and I think 
treatments will be available from every 
family physician in America 
who accepts Medicare.

The question is whether this occurs

next year or 20 years from now.

2. As a teacher-turned-programmer, 

due to CFS, cognitive functioning is 
particularly important for me… I now can
barely skim through your not-too-difficult
articles … Anyhow, you said, "I may consider
testing some persons with… PCR for HHV-6,
but this can be expensive and not covered
by insurance." I would like to know about
how much money this can be 
(the potential cognitive benefits could be well,
well worth it for me)…

Response: There are two issues here. 

The first is cognitive. Historically I have
always been struck by the similarities
between the cognitive decline in ME/CFS
and HIV infection. This is one reason that I 
have long felt that a retrovirus would be an
excellent candidate to be the puppet-master.
Secondly, as far as the finances are concerned,
it is possible that things will change.

Federal approval of diagnostic testing

needs to be put on a fast track. Now.


1. Suhadolnik R, Peterson D, Reichenbach N,

et al. “Clinical and biochemical characteristics
differentiating chronic fatigue syndrome from
major depression and healthy populations:
Relation to dysfunction of RNase L pathway.”
Journal of Chronic Fatigue Syndrome,

2. Nijs J, De Meirleir K. 

Anticancer Research 2005;25:1013-22.

3. Schlaberg R, Choe D, Brown K, Thaker H, 

Singh I. 
“XMRV is present in ...” PNAS 2009.

4. Coffin J, Stoye J. 

Science Express, online Oct 8, 2009.


Contact: If you wish to contact Dr. Bell, 

e-mail to; very few 
inquires are answered, but comments 
are welcomed.

To Subscribe: If you wish to either subscribe

or unsubscribe to the Lyndonville News,
and follow the instructions. 
The e-mail subscription is free.

Disclaimer: Any medical advice that is 

presented in the Lyndonville News is generic
and for general informational purposes only.
ME/CFS/FM is an extremely complex illness
and specific advice may not be appropriate
for an individual with this illness. Therefore,
should you be interested or wish to pursue
any of the ideas presented here, please
discuss them with your personal physician.
© 2009 David S. Bell

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