My take on CFS and XMRV, as of today

[Guest guest]

From: Jan van Roijen

Date: Mon Nov 29, 2010 3:28 am

Subject: My take on CFS & amp; XMRV -as of today

My take on CFS and XMRV, as of today

by Young

Thu Nov 25, 2010

Hi everyone,

This is my current take on XMRV research. This is

from many sources. I am omitting a lot of detail: info

is easy to find, I just want to make sure that

everyone knows the issues. I am happy for people to

disagree with me, this research still has several

years to go before it becomes completely reliable.

1. This is a real virus, present in over 7% of the

healthy population, plus some percent extra for less

healthy people. This figure will rise as the testing is

still producing false negatives. The question over

possible contamination is close to dead and

extremely improbable at this point. Most studies that

can't find it in CFS are zero-zero studies: they can't

find it anywhere except in spiked samples.

2. This virus is densely present in a number of sex

hormone sensitive tumour types, including breast

and prostate. It has also been linked to leukemia

and lymphoma.

3. XMRV is nearly universally present in strictly

defined CFS patients. With still not completely

effective testing, prevalence is up to over 98%.

4. It is likely that those with XMRV and no CFS are

more likely to die of cancer than those with CFS and

XMRV.

5. The implication is that CFS is an emergency

antiviral state that assists long term survival. The

cost is long term decreased capacity. This state

never resolves because the body can't kill a

retrovirus.

6. Antiretrovirals (XMRV specific HAART) appear to

work, and this includes symptoms as unlikely as

neuropathy. We don't yet know about really long

term patients, but medium term patients look like

making substantial recovery.

We also don't know about the impact of all

co-infections. It is likely that additional drugs such

as Ampligen or Actos may be useful as adjuncts to

the antiretrovirals. Other drugs may be necessary to

deal with complications such as co-pathogens.

7. The Blood Working Group, which in its second

stage should give us a definitive diagnostic protocol

for XMRV, is likely to present this on or before

December 14. This will pave the way for large-scale

blood testing, which will give us better population

prevalence figures.

8. XMRV is infective and present in most body fluids,

including saliva. Infectivity rate is very low, but

given the prevalence and range of potential

transmission modes, everyone who is not immune is

at risk. At the moment that means everyone, but I

suspect a population subset will have natural

immunity or at least resistance.

9. Animal models are being developed including one

strain of mouse that is not immune, and at least one

species of monkey. Infected monkeys are being used

to produce definitive XMRV blood samples for

reference use. XMRV is very hard to detect in blood

some time after infection, possibly because several

blood factors destroy the virus. Over seventy mouse

species are known to not carry XMRV. XMRV has been

found in brain tissue.

10. Much more is known than has so far been

published. Publishing takes time, and some studies

are not currently accepted for publication. Other

studies have been rejected grant funding. Funding

and recognition are still very big issues. Singh has

presumably not published many of her findings due

to patent applications, but we can expect a number

of papers from her and her team next year as she

catches up with publication.

11. It is extremely unlikely that XMRV is benign, but

this doesn't mean it directly causes CFS. It may be

co-causal, and require either genetics or specific

events such as co-pathogens. We also do not yet

understand its neurotoxic envelope. There is always

doubt however: we still need a lot more research to

prove causality.

12. Clinical trials are very likely to commence next

year. More and more drug companies are becoming

interested, along with virologists and oncologists.

Recommended reading:

Mainstream: the wall street journal, see for

example:

http://on.wsj.com/fkyz1y

For anecdotal information on antiretrovirals:

http://bit.ly/i0dky6

The Whittemore- Institute:

http://www.wpinstitute.org/xmrv/index.html

Bye,