Wednesday, December 1, 2010

My take on CFS & XMRV as of today

by Alex 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

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

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

General XMRV reporting - see the Phoenix Rising
Buzz page:

For anecdotal information on antiretrovirals:

The Whittemore-Peterson Institute:


My PS: Highly increased incidence of non-Hodgkin's lymphoma in ME/CFS

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