Thursday, March 11, 2010

XMRV statement from Dr. Enlander


KBO: 0817.905.582

In October the Whittemore Peterson Institute in Nevada published a report on
the presence of XMRV virus in the ME/ CFS patients. This report, published
in Science, created much excitement in the medical world and in the media.
The report suggested the aetilogy of ME/CFS was indeed a physical disease,
tending to change public opinion.

However, we must temper this excitement with careful research that
replicates or denies the thesis. This new research must be careful to
replicate or deny the original research with a large cohort of patients and

There are numerous groups with their own agenda who wish to confirm or deny
the original research. Large government grants and insurance disability
interests are at stake. These groups have rushed to publish unsatisfactory
comparative research with anecdotal results
, based on small number of
ill-defined patients, stale specimens and differing research methods.

It would be helpful if there was a collaborative effort to test a
significant number of the same specimens in different research centers.
Perhaps 200 Fukuda criteria and Canadian criteria patients and controls
could be divided and tested in multiple centers in a double-blind trial to
replicate or deny the original research. It is time for the psychological and physical researchers to collaborate rather than cast aspersions on each other's work. ESME would support such collaboration.

Dr. Derek Enlander

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I started to be taken more seriously after a fibromyalgia clinical trial gave me a C-Reactive Protein test, then deemed me "too sick" for the clinical trial. 
C-Reactive Protein demonstrates infection/inflammation, without identifying the exact cause.  Good for viruses that don't have a test yet.  Suddenly, this was not just all in my head any more, even though we still don't know whether it's XMRV or something else.

1 comment:

porphyria's lover said...

I completely agree. The last thing the me/cfs community needs is a return to the scepticism and derogatory psychological labeling of the past. Whether or not xmrv turns out to be the root cause of me/cfs or another blind alley really doesn't matter. What does matter is that the discovery of xmrv by Whittemore Perterson back in October lent some credibility and much needed publicity to me/cfs research. I'd hate to see that undone simply because xmrv turned out not to be the cause.