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CFS Patient Advocate
Monday, October 18, 2010
Dr. Judy Mikovits.
The NJCFS association puts on an annual
conference day, often at the Sheraton in
Eatontown, N.J,. in mid to late October.
This organization is one of the best state
ME/CFS organizations and their conferences
are uniformly strong.
This year's NJCFS conference on October 17
was the best that the Patient Advocate has
It was also the most well attended as
people came from all over to hear Dr. Judy
Mikovits from the Whittemore Peterson
Institiute give a lecture on the most recent
research connecting XMRV (and its
variants) to ME/CFS.
They were not disappointed.
Dr. Mikovits gave a smashing one hour talk,
rattling along at a high rate of speed,
covering an astonishing amount of ground.
The Patient Advocate has followed Mikovits'
talk since 2007 and identified her very early
on as a very special researcher.
This talk was very hard-hitting, dense and
delivered very quickly. It far extends the
Patient Advocate's capacity to give this talk
the justice that it deserves.
Fortunately the talk was visually recorded
and will be available on DVD in six weeks.
Get ahold of it and watch it.
In the first part of the lecture Mikovits:
* drove quickly through the history of
various published papers that establish the
association of a family of gamma
retroviruses with ME/CFS.
* went over familiar ground with the
problems of the negative studies, and
stated her arguments against
* cited "greater sequence diversity than
originally observed", stating that "Variation
is our friend"
* twice cited Sandy Ruschetti's importance
in this research, including a key role in
isolating the virus,
* spoke of how hormones and inflammatory
cytokines turns on the viruses
* speculated about reservoirs, where the
virus hides, where it doesn't
* gave examples of teasing out XMRV with
different testing devices.
* stated that "sample processing is
* stated that the association of
XMRV-related viruses is stronger in ME/CFS
than in prostate cancer
* reiterated that the WPI is the only one
who has isolated virus from ME/CFS
* talked about subgroup P
* indicated that X -variant and P-variant
are two independent viruses
* found x and found p in individually cloned
* stated that XMRV and its variants is not
a mouse virus
* stated that this is not a recombination,
but a new human retrovirus
In the second Part of the lecture she
presented data on the XMRV work being
done in UK. Along the way she
* 50 UK samples went to two independent
labs, each tested multiple ways
* David Bell (recently retired) is working as
a clinical consultant, presumably with the
* ME/CFS is not a woman's disease
* Ruschetti cultured samples from Alter
cohort and found x-variant in all of them
* found complete concordance between
viral isolation and detection of antibody
reactivity in UK plasma
* Lo's primers picked out negatives as
* Conclusion: found evidence of HMRV in
>70% ME/CFS meeting CCC criteria
* 1st generation testing will get better.
Finally Dr. Judy talked of XMRV-related
virus in family and other illness
* presented Cheney's patient XMRV
* showed family trees with illness
* detection of XMRV in 16 of 17 families
with neuroimmune illness
* "Methods matter!"
* HMRV research is in it infancy as much
more research needs to be done.
This was an astonishing talk and its
implications are far reaching. This gal has
blown the lid off of ME/CFS research and it
is going to be interesting to see where
things go from here as the WPI continues
to dig deeper into research (with
unpublished papers) and at the same time
reach out to others in an attempt to build a
coalition to make inroads into this illness.
The Patient Advocate, along with many
others, sees the momentum coming out of
this research and the possibilities and it is
time to drop the detachment and give the
WPI and its affiliates any help that one
can, in any form.
This lecture, along with others the day
before, clearly point where things are going
with ME/CFS research and treatment.
There are other reports on the internet on
this conference. The Patient Advocate
would recommend reading them to get a
XMRV Global Action
Dr Mikovits' lecture
at the NJCFSA
XMRV positive's notes
XMRV Global Action, 17 October
I'll preface this by saying that I had no
sleep and I may have gotten some of these
points wrong. I also forgot to get a
conference booklet with Judy's slides, so
I'm writing from memory. I didn't stay for
the Q&A, so this is just from her lecture.
* Judy reiterated that there is NO
evidence of contamination and highlighted
that Bill Switzer's mtDNA test was used to
rule it out as an additional check besides
all the other verifications that were done
for the Science paper.
* Evidence that HMRVs are associated
with CFS is MUCH stronger than the
association with prostate cancer because
they have isolated the virus - something
none of the prostate cancer studies have
* One of the negative studies (Groom
et. al) used a method to detect monoclonal
antibodies to MLV Env proteins (gifted by
Chesebro/Evans). This test recognizes all
PMRVs except XMRV. Oops.
* Frank Ruscetti and Rachel Bagni
isolated virus from the Lo/Alter patients (I
believe it was those that had a fresh blood
draw - the 8 of 9 that retested positive)
and what they found was XMRV. THIS IS
* Over 70 species of mice were tested
by Coffin and none of them contained
XMRV. This is clearly a new human
* Lo/Alter ran the WPI UK samples
through their probes and picked up a couple
more positives than the WPI found
* The WPI family studies were
elaborated on. Judy showed family trees of
a few generations - some have CFS, some
Fibro, some lymphomas, ASD, one heart
attack (11 yr old boy), some are not
infected, some are infected but
asymptomatic. Overall, it demonstrated a
strong familial link.
* They've found HMRVs in people as
young as one years old and as old as 88
* Judy estimates prevalence at between
10-20 million Americans infected. I think
she said this was based on data from the
Blood Working Group.
* Emphasis on the German study that
found XMRV via nasal swabs in
immunocompromised patients suggests
transmission through respiratory secretions
is highly likely. She also mentioned blood,
urine, and feces again as probable
Oh, I should mention that there were many
of our most beloved in attendance including
Hillary Johnson, Annette Whittemore, Marly
Silverman, Donnica Moore, and the Cairns
family (Peter shot another video of Judy
outside before the conference started)
I just remembered another point.
The latest negative autism study used
Cooperative Diagnostics 'drop o' blood on
paper' test. They've been trying to get that
thing published since last fall and only
after the WPI presented their autism
poster at the XMRV Workshop did they
finally published this 'crap' study. Her
words, not mine.