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XMRV Buzz - Take a Deep Breath/the Big XMRV Meeting, Singh On XMRV, Sample prep?

Cort

Phoenix Rising Founder
Yup I know that one! Can so relate to that! :D When I was first starting to get ill, I managed to set fire to a long sleeved dressing gown I was wearing :eek: Luckily as the flame went up one sleeve, across the back and down the other - it somehow missed my hair which just happened to be tucked into the collar for some bizarre reason!

The flame self extinguished before I could guess what was happening - must have been a flame retardant fabric or similiar - the only indication was a flash of light and a whiff of something burning! The whole thing was over before I realised what had actually happened.

I can laugh about it now, but I realised immediately how lucky I had been.

It certainly puts a whole new spin on illness and 'inflammation'. :D


Illness and Inflammation! Good one! ;);)
 

Cort

Phoenix Rising Founder
Dec 8th XMRV Buzz

XMRV Buzz from Dec 8th

News From Spain On XMRV and CFS - Tomorrow! - Clara Valverde on behalf of the Spanish CFS League posted an announcement stating that Spanish researchers will announce their XMRV results tomorrow. When we last heard from Spain, Dr Montoya - an infectious disease specialist in Stanford, who has been involved in several ME/CFS studies and is currently collaborating with Dr. Lipkin on a pathology study, was in town to talk with Spanish retrovirologists. At that time the XMRV study was still underway but it appears they have some concrete news to announce.

Big Immune Finding - perhaps almost as importantly they will announce the finding of an immune deficiency in cytotoxic T-cells (CD 8) in CFS. This could be big news. Right now there is abundant evidence of problems with NK cells in CFS but NK cells, which Dr. Klimas described as a primitive form of a CD 8 cell, simply dont get the respect that cytotoxic T-cells do. Finding an abnormality in one of the recognized heavy hitters of the immune system would be a huge win if it was validated. Dr. Klimas has stated that shes found reduced perforin levels in cytotoxic T-cells and shes reportedly been working to validate cytotoxic -C problems in CFS but this would be the first official announcement by a researcher. If validated it might very well turn many immunologists heads - causing many to take new look at ME/CFS.

The researchers will also suggest ways to cope with this newly discovered immune deficiency as treatments are being developed. Spain will definitely be in the ME/CFS spotlight tomorrow!

Of Mice Men and MLV-s - With no less than four XMLV publications under her belt during the last 14 months Kozak is the premier XMRV evolutionary biologist. Her latest paper is a review of her and others work on murine leukemia retrovirus (MLV) evolution that delineates where contamination could come from and where it could not come from. You can find it on the Front Page of the Forums (links are not working today).

Tripping Up XMRV Too Completely? (from the abstract)
- Dr. Bogard from Duke penned a paper stating that, to put it bluntly, XMRV gets its butt kicked by the APOBEC 3G enzyme found in most of our cells and thats something of problem because if its getting knocked down in most areas of the body it becomes difficult to figure out how it is causing damage. XMRV does appears to be more active in prostate cells that do not carry this enzyme and it is apparently these types of cells where XMRV could do its work.) The authors also assert that if XMRV or other MLVs had been active in human cells for long that over time they would have evolved resistance to these enzymes - just as HIV has. In short they appear to be suggesting XMRV is a new entrant to humans and because of that its largely being bottled up effectively in many of our cells by our innate antiviral defenses. XMRV may very well be causing a problem in CFS but if it is its because its replicating in a still unidentified other cell in another part of the body.

Six Days to BWG Committee Meeting (and answers for Phase II of the study? - Dr. Mikovits reported the BWG was trying to finish up Phase II by the next BWG meeting...hopefully by then we will have a report on their findings regarding the sampling/storage/contaminatiion issues
 

Esther12

Senior Member
Messages
13,774
I hope the BWG meeting will bring forth an announcement too. Even if it is confused and uncertain, we should be allowed to know what they do.
 

Cort

Phoenix Rising Founder
I am too - it's been a long time....:In bed::In bed:

I hope the BWG gives us something definitive but at least we will find out, as Esther notes, something! They have to report something - so we will, at least, find out where they are. :D
 

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
I probably haven't been paying close enough attention, but I didn't realize that the Blood Products Advisory Committee is also considering deferral (banning) of blood donors with past or current history of prostate cancer, as well as those with CFS.

I can't help but think that will make a bigger splash than just deferring PWCs alone. And if the media reports say "a virus associated with prostate cancer and chronic fatigue syndrome" that will catch way more people's attention than if it were just about CFS.
 
C

Cloud

Guest
Lol I am always glad when I can provide some entertainment :)) Let me tell you.. there is more where that came from; walking into a room and then realizing you have NO idea what you wanted to do there, throwing the eggshells in the pan, and the egg in the trash, looking for your glasses when they are in fact on your nose etc etc. I have had this stuff since I was very young, so plenty of stories :)) The pen story and the tea story sound totally typical and I am sure they'll happen to me sometime. I always claim my absentmindedness it is an indication of my genius... HA

We have tons of great material for comics. Fabulous Fury Freak Brothers would have nothing on us!
 
C

Cloud

Guest
I probably haven't been paying close enough attention, but I didn't realize that the Blood Products Advisory Committee is also considering deferral (banning) of blood donors with past or current history of prostate cancer, as well as those with CFS.

I can't help but think that will make a bigger splash than just deferring PWCs alone. And if the media reports say "a virus associated with prostate cancer and chronic fatigue syndrome" that will catch way more people's attention than if it were just about CFS.


I agree, but it may also be confusing because those 2 diseases would seem entirely unrelated to John Q public. I think "causes CFS and Cancer" is much more powerful....and sounds like where the research is going.
 

Cort

Phoenix Rising Founder
Hey Cort - Do you know when Dr. Baranuk is going to release or publish the "Spinal Fluid" study?

When I saw him at the CFSAC meeting it sounded to me like it would be real soon but I think 'soon' has a different meaning the research community :). He did say the results were good - which is great news particularly since he expanded the study into new areas I think


:thumbsup::thumbsup::thumbsup:
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Yes... if we had only half of the results that have been announced, i would already be happy. There's a lot that should be released "soon". Some time ago it was said that by the end of the year, things should be a lot clearer. It's not very far away anymore and we don't know much more yet.
 

CBS

Senior Member
Messages
1,522
True Alex, I find the cognitive is the one that weighs on my mind the most. (grins) But the cardiac problems are probably the most serious. The constant high heart rate, the shortness of breath, the low blood volume leading to vertigo and feeling of leadeness when I stand for more than a few moments. It will be interesting to see what cardiologist actually have to say about it once we get some on board!

Don't be too surprised if we learn that low blood volume in at least some patients is due directly to mid-brain/CNS nerve damage. Sleep, cardiac, SOB and digestive problems too. My concerns fall much more squarely in the permanent neural damage camp.
 

Jemal

Senior Member
Messages
1,031
Yes... if we had only half of the results that have been announced, i would already be happy. There's a lot that should be released "soon". Some time ago it was said that by the end of the year, things should be a lot clearer. It's not very far away anymore and we don't know much more yet.

I am getting a bit frustrated as well. Science seems to move at a snail's pace. New people are getting CFS every day and we keep on getting older... so many are spending their lives in some sort of waiting room. Sigh.
 

Cort

Phoenix Rising Founder
I am getting a bit frustrated as well. Science seems to move at a snail's pace. New people are getting CFS every day and we keep on getting older... so many are spending their lives in some sort of waiting room. Sigh.

Agreed no one is getting any younger and the Baraniuk study has been years in the making; not his fault, of course, he is totally dedicated to ME/CFS but one researcher alone can only move so fast...and that's the crux of the matter...when you have such low interest in a disorder and such low research dollars available then you often have one researcher taking on one topic at a time.. which means that validating anything takes years and years! Imagine if we had real research interest - someone would have jumped on Baraniuks finding immediately and we would have validation studies going left and right; the situation would have been (relatively quickly resolved) and if the result was positive they would have dug deeper.

As it is sometimes we have positive results and interesting findings that go UNTESTED! It's remarkable to see a positive result just sit there and have nothing happen. That's supposed to happen with negative results - not positive results......
 

Cort

Phoenix Rising Founder
The Buzz From Spain

The Report from Spain was rather dry (to say the least :rolleyes::rolleyes::rolleyes:) but I thought it was good news. http://www.facebook.com/note.php?note_id=10150109301955915&id=100000436316743

The Buzz From Spain - Cristina Montane relayed a report from Dr. Julia Blanco on the meeting. Dr. Blanco first noted the usual on XMRV: that the problematic methodologies being used impair detection, contamination could be possible for some results, the polytropic MLV findings and the need to assess anti-retroviral effectiveness.

((editorial) With regards to contamination effecting some findings ….with roughly the same percentage of positives in people with CFS and healthy controls showing up in Dr. Cheney’s patients and the London study and the reduced levels of positives in theVIP Dx results - it seems hard to believe that this statement applies to the WPI/VIP Dx findings. On the other hand it’s hard to understand how a small Research lab in Reno Nevada would be able to stump much bigger and presumably more sophisticated labs and there have been a bunch - from BSRI to the Koch Institute to the CDC’s HIV Labs…. XMRV remains a conundrum. The NCI’s request that researchers give details that usually don’t make it into their methods section suggests they believe the problem is more than not following the WPI’s techniques….We await Dr. Singh’s results in particular given the care she had given it… using a PCR technique that seems almost immune to contamination…with the same blood storage and sampling techniques used for both healthy controls…and its overlapping checks…and, of course her experience with these pathogens. )

Finding XMRV! - After a rather strange sounding statement which seemed to indicate that they were now stating their results: “Considering the evaluation of our data set in the context of the knowledge we have of other retrovirus, we can point out” they then noted that " XMRV sequences can be found in patients with CFS but also in healthy donors or HIV+ patients. The copy numbers appear to be very low, and their pathogenic potential is unknown” which suggests, since no one to my knowledge has found XMRV in people with HIV, that they have looked at three groups; CFS, HIV positive and healthy controls and found XMRV in each of them - a big step forward. Simply finding XMRV is quite an accomplishment given all the zero/zero studies.

What we don’t know, of course, is what the prevalence was - an important issue! If its high in people with ME/CFS and low in health controls then we’ll another strong result. In any case they are finding XMRV and one wonders if the reason they are finding it has anything to do with Dr. Mikovits earlier trip to Spain reportedly coach a lab there on how to find the virus.

Very Rare - they also report that when they found XMRV they found it in low numbers, which, in a way is encouraging as well, since that is what we would expect.

Immune Findings - Dr. Blanco reported the Spanish researchers also found alterations in B, NK and T cells. Since NK cell dysfunction is basically expected in ME/CFS, the focus here might be on those B and T cells. Any unusual T-cell finding would be a significant development given the key, key role they play in the immune response. A B cell finding would be very interesting as well given that a small Norway study has found that Rituximab - a B-cell depleting monoclonal antibody - has been quite effective in some people with CFS. A paper on that with an interview with the study director, Dr. Olaf, will appear shortly on Phoenix Rising.
 

Cort

Phoenix Rising Founder
Mikovits Talks

Dec 8 Buzz - Part II

Dr. Judy Mikovits Speaks - on XMRV, ME/CFS, MS, Lyme Disease, Cancer.(is that all???). - The WPI has kind of been playing it safe it seemsbut no longer Dr. Mikovits is going to broaden the discussion on XMRV just a little bit in Santa Rosa, Ca on Jan 17th when she talks on its relationship to MS, Lyme disease and presumably other types of cancer than prostate cancer.Early on we heard about XMRV's possible relationship to autism and atypical MS- which was later described as something of mistake...If the report is correct Dr. Mikovits is going to open that discussion again. One wonders if a new paper is in the works (except we hear that Journals will not accept XMRV papers from the WPI until their findings have been completely validated).

The study of note with regard to 'other diseases' is, of course, the Singh autopsy study....which should tell us just where XMRV is found in the general population and should shed some light on its pathogenicity. If XMRV shows up in the brains of people with encephalopathy or in the breast tissues of people who died of breast cancer.....then it's hard to imagine the wheels won't really come off on XMRV research

...This interesting meeting will take place from 2-5 pm
 

omerbasket

Senior Member
Messages
510
Early on we heard about XMRV's possible relationship to autism and atypical MS- which was later described as something of mistake
I don't remember that it was described later of something of mistake. Quite the contrary: I remember reading an abstract saying that the WPI found XMRV in 14 out of 17 children with autism.
 

Enid

Senior Member
Messages
3,309
Location
UK
Thanks CBS - I'm pretty convinced mid brain/CNS nerve damage too looking back. I recall not being able to lie on the back of my head at one stage and concurrent aural and visual problems and severe gut difficulties.