Xmrv buzz! the cfs/xmrv news page
The XMRV Buzz! - the CFS/ XMRV News Page
Dr. Deckoff-Jones Talks
there's lots of stuff to
consider in Dr. Deckoff's latest blog on why the antivirals
seem to be working for her and her daughter but not in
some others. As always she takes an admirably sober look
at their treatment situation. She does not recommend that
anyone take these drugs unless they are under a doctors
supervision. She notes the risks of going on a possibly less
than optimal drug regimen since we know so little about the virus at this point and
how doing so is a personal decision. (Taking antivirals in the wrong combinations
can imperil the effectiveness of later treatments). She also believes anyone who
starts to take antiretrovirals should be prepared to be on them permanently.
She provides her entire treatment regimen and notes how effective a treatmentcalled "Actos" which assists with insulin sensitivity and enhances ovulation andprogesterone levels has been for them both but particularly so for her daughter, forwhom she says it has been 'quality of life-changing'. Given XMRV's androgensensitivity there was some concern about the effects of a progesterone enhancer butDr. Deckoff, herself, is taking testosterone and both of them feel better. Dr.
Deckoff's statement about endocrinologists "Endocrinologists as a group seem to beparticularly clueless with respect to managing CFS/Lyme patients, even thoughhormone depletion is probably pretty universal.", in my experience, is apt.
This blog is loaded with information -far more than could be covered here. Let'sjust end with her summary to date of her and her daughter's progress; "All I reallyknow for sure is that we are X+, we've been on antiretroviral treatment sinceMarch, on three drugs since May and we are a lot better. Lyme Disease was a bigpiece for Ali, probably not for me. We've each gone up at least 30 KPS points sincestarting HAART. I don't think it's possible that antiretrovirals haven't helped us.
Nothing else we've tried in the last few years has worked, except for Deplin andAli's Actos, and I think we can all agree that we were unlikely to get this kind ofimprovement from those interventions. But it is possible that the other things we aretaking are potentiating the effects of the drugs or ameliorating the side effects oftreatment. Neither of us feels completely well, especially me. But we are bothhugely more functional. We can only hope it continues."
The big 180 year-old British medicalJournal Lancet surprised with a new more viral-based slant on ME/CFS. The
editors put two and two together and reported that a recent study finding increasedrates of oxidative stress and white blood cell apoptosis in adolescents with ME/CFSsuggested a viral infection was at work.
Lancet was on shaky ground suggesting that most people who get ME/CFSfollowing infectious mononucleosis eventually recover but then they went on tostate that ME/CFS was mostly likely caused by pathophysiological problems - aremarkable statement coming from this journal. They backtracked a bit on thatstatement citing the uncertainty about the physical-psychological interactions inME/CFS but then argued that research into the disorder should receive 'highpriority.'
Phoenix Rising Forum members found little to like about the editorial but I thoughtit presented a major step forward for this particular publication.
m wasoff the charts Nevada Newsline brought Mike Hillerby back. Mike called thenumber of calls and emails he receives almost frightening given how manydesperate and untreated people they indicated are out there.
How it all it got started
- Dr. Lombardi explained just how XMRV/CFS
connection got started. As with many notable discoveries the process was amazing.
Dr. Lombardi was already looking at RNase L (his was the only lab in the US to
test for the RNase L defect in ME/CFS) and was interested in prostate cancer and
contacted Dr. Silverman. While they were at a prostate cancer meeting they 'threw
around' the idea of looking for XMRV in CFS patients - something he felt was a
kind of 'pie in the sky' idea at the time given how different the two disorders were.
Some time later, a graduate student came into the office asking for something
interesting that he would do it for free. at which point, Dr. Lombardi, stating that
he'd promised Dr. Silverman he'd get the testing done, gave him the samples.and
off they went! Soon after that the samples starting turning up positive. Such were
the humble beginnings of this major discovery :).
Dr. Lombardi proved to be an interesting speaker and he soon said something veryinteresting - that XMRV has the 'highest correlation' of any marker that's beenfound in ME/CFS. and he would know. As the head of the (former) VIP Dx Labs- he regularly tested all sorts of markers in CFS. The fact that XMRV shows up in ahigher frequency of people with ME/CFS than anything else is notable; that, initself, is a strong argument that it plays a key role in this disorder.
Mike Hillerby noted that they are getting better and better at learning how to findthe virus and that their test is becoming more and more reliable over time. TheSymposium that occurred immediately after the WPI's opening was targeted atclinicians was targeted at such things as having physicians track which immuneparameters were being disturbed by XMRV. Mike Hillerby said they felt the clinicwill be open by the end of the year. One patient caller noted how phenomenal Dr.
Discrepancies in Research Studies
- Dr. Lombardi feels that different patient
cohorts may very well explain many of the differences between the studies. Mike
Hillerby noted the presence of subtle genetic sequences in MLV's have probably
played a role as well. About 85% of ME/CFS patients with well characterized CFS
have tested positive at the WPI.
What about Fibromyalgia?
- Dr. Lombardi stated they had seen some FM patients
with XMRV and fit it into the same neuro-immune disease category as ME/CFS.
As before Mike Hillerby proved to be an superb spokesman for the WPI and seemsto be able to seamlessly deal with just about any topic. There is much more in this50 minute interview -
- this webinar with Dr. Komaroff is tommorrow! Dr.
Komaroff collaborated with Dr. Alter on the big XMRV study and has participatedin infection research in CFS for many years. This webinar is a little earlier thanmost- it starts at 12:30 EDT. here.
- Today is several times; it's Sept 14th, for me personally it's 3
days after my birthday, it's 4 days after the WPI Gala Fundraiser, and 327 days
since the WPI published their paper that turned the ME/CFS world upside.but
what time it really is, I think, is A Time to Act.
I believe we have an opportunity
present to us right now that may be unique and which, if skillfully used, could
propel us further than we have ever gone before. Our tipping point - the point at
which we give a small nudge that ends up changing everything - could be upon us.
Check it out in - Mindy was there and she's provides the
first real overview of the conference itself that we've gotten so far. Check it out
in an interview for the Interscience Meeting
on Microbial Agents
- Dr. DeMeirleir reports
the presence of reduced CD3 T-helper cells and CD57 lymphocytes and higher
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