#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

companies.

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

by Robert H Silverman, PhD, at the 

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 - www.wpinstitute.org).

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  

lynnews@davidsbell.com. 

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. I...do 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.
____

References:

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,

2004;12:5-36.

2. Nijs J, De Meirleir K. 

“Impairments of the 2-5A Synthetase/RNaseL” 

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. 

“Perspective - a new virus for old disease?” 

Science Express, online Oct 8, 2009.

——————————————————————

Contact: If you wish to contact Dr. Bell, 

e-mail to lynnews@davidsbell.com; very few 

inquires are answered, but comments 

are welcomed.

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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