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Jan 18th Webinar with Dr. Lucinda Bateman

Lily

*Believe*
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other than that impressive graph, i did not find any now info coming out of this talk. do others agree? it was just basic xmrv info.

dr batemen is impressive, tho....!
Nah, I wasn't expecting anything new or more indepth. Don't think I'm expecting anything new from Klimas on the 22nd either, but I don't mind surprises!:D
 

Dr. Yes

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(from Cort, relating to blood supply testing):
but how do they determine if XMRV is there without a standardized test? I suppose they look for as many different genetic sequences as they can find and assume that at least some of them have to show up.
I was wondering the same thing. Tried to get my question on there but just a bit too late! I'm going to assume (and hope) that they are not using the Cooperative Diagnostics protocol, or anything like that... but how can they use their own protocols without having researched them properly? Are they collaborating with the WPI in this regard?
 
K

_Kim_

Guest
(from Cort, relating to blood supply testing):


I was wondering the same thing. Tried to get my question on there but just a bit too late! I'm going to assume (and hope) that they are not using the Cooperative Diagnostics protocol, or anything like that... but how can they use their own protocols without having researched them properly? Are they collaborating with the WPI in this regard?
Yes, isn't Judy Mikovits on the Task Force?
 

hensue

Senior Member
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I am a little confused about the FMS and Cfs. Since I am positive for xmrv and diagnosed myself with cfs. The graph about pain fits me to the tee. So when they say these symptoms overlap it gets a little confusing.
Also did the Dr say something about treating cfs patients with fibromyalgia drugs or did I not hear that right?

If so that is depressing most of the people are on antidepressants of some kind.
 

Dr. Yes

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That's good news, Cort.. do you have a source for that? I couldn't find it anywhere on google. All I could find was that the NIH is working with Dr. Michael Busch at the Blood Systems Research Institute on the blood supply issue. According to the CAA release:

The U.S. Department of Health and Human Services (HHS) has formed an interagency scientific working group on XMRV. The Blood XMRV Scientific Research Working Group will report to the Department’s Blood, Organ and Tissue Senior Executive Council through established mechanisms. No formal statement has been issued yet, but the working group includes representatives from the DHHS Office of Public Health and Science, the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA). The working group will have scientific responsibilities for investigation of XMRV as it relates to the blood supply and CFS. Suzanne D. Vernon, PhD, the CFIDS Association’s scientific director, has been asked to participate in the XMRV scientific working group.
No mention of Mikovits being asked, though this was an earlier release. I would be surprised if she was not... Still, I hope the blood supply testing is being advised by Mikovits and Vernon et al, not just run through the "usual channels", as Dr. Hanna at the NIH said last fall:

"Anytime a new finding arises, the supply for the general donor population is tested for its prevalence to help determine if it is even blood borne. Currently, Dr. Michael Busch at the Blood Systems Research Institute (www.brsrif.org) is doing this for XMRV; NHLBI will pursue according to usual practice."
Some interesting stuff from Busch back in November was reported in a Nevada paper's blog here ... the main stuff:

-Local health agencies seem to be still getting up to speed on this. The medical director for all United Blood Services locations in Las Vegas wasn’t aware of the month-old Science article. A Southern Nevada Health District spokesperson declined to speak on this “speculative” topic.
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Dr. Michael P. Busch, Director of the Blood Systems Research Institute, the research arm of United Blood Services’ parent company, Blood Systems, says, “It’s not that we’re keeping anything secret, but there’s no reason to alarm anyone.” Blood Systems also serves as the central lab for the National Institutes of Health blood safety network.
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Busch says that every year or so, a potentially blood-transferable virus is identified with preliminary data associating it with disease, but “most of the time these things don’t evolve to be a serious problem.”
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Still, the Science article has launched his organization into a collaborative effort with a number of government organizations, including the Centers for Disease Control, the National Institutes of Health, and the Food and Drug Administration, to establish the prevalence of XMRV in the blood donor population. That study will start with a Whittemore Peterson Institute collaboration in Reno, where 1,000 healthy donors’ blood will be screened by multiple labs. Busch estimates it will take up to six months to see how prevalent XMRV is in the blood supply, and another six months to fully develop and get FDA approval of a test for screening, if it is determined one is needed....

..Despite the local United Blood Services medical director not being aware of this development, Blood Systems Research Institute’s Busch counsels caution in a follow-up e-mail to CityBlog.
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“I appreciate that you are sensitive to unwarranted concern re the safety of the blood supply and the need to maintain an adequate number of donors to meet patient needs,” he writes. “That said I do think that persons with diagnosed CFS should probably refrain from donating until specific studies are conducted to establish whether XMRV is causally linked to CFS and the virus is present in healthy donors and transmitted by transfusions. These studies (will) evolve quickly over the next 3-12 months.”
That article was posted November 15 of last year... make of it what you will.. I certainly hope Dr. Mikovits has been allowed to be more centrally involved in all this now.
 
K

_Kim_

Guest
That's good news, Cort.. do you have a source for that?
Source = Wanda Jones :victory:

Wow! Wanda Jones not only answered, she answered immediately--on Thanksgiving Day! I am just not used to government people responding so quickly.

Here's what she had to say:

FDA, NIH, CDC--the agencies responsible for blood safety, as well as several non-Federal groups. The team is drawn from the retrovirus expertise of the agencies. They are developing several "panels" of thousands of samples drawn from blood donors, from CFS patients, people with other diagnoses, etc. They are taking fresh as well as repository whole blood samples, not serum. They have standardized reagents, working with Judy Mikovits. The work is just beginning.

Wanda K Jones, DrPH Deputy Assistant Secretary for Health (Women's Health)
US Department of Health and Human Services
200 Independence Ave SW
Washington, DC. 20201
Ph 202 260 4432
Fx 202 401 4005
BTW, I forgot to mention the non-Federal components are largely those of the longstanding, NHLBI-supported REDS Study.

Wanda K Jones, DrPH Deputy Assistant Secretary for Health (Women's Health)
US Department of Health and Human Services
200 Independence Ave SW
Washington, DC. 20201
Ph 202 260 4432
Fx 202 401 4005

Sent from my Blackberry while I'm away from my desktop.

----

After the above message, I wrote to Wanda and asked for more details. She sent this message:

It's a large group, I have no idea myself who all of them are; often 50 people on the conf calls. They are good scientists, among the best.

Wanda K Jones, DrPH Deputy Assistant Secretary for Health (Women's Health)
US Department of Health and Human Services
200 Independence Ave SW
Washington, DC. 20201
Ph 202 260 4432
Fx 202 401 4005
 

Dr. Yes

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From Wanda, via Wildaisy via Kim:
They have standardized reagents, working with Judy Mikovits.
So I guess Wanda's saying that they aren't merely testing WPI samples with their own protocols, but are using at least part of the WPI protocol (but to what degree.. is it limited to reagents, or to other methodology?). Still don't know if Mikovits is part of the same working group Vernon is, and how much say they will have anyway. At this stage the NHLBI effort should be working closely with Mikovits to avoid even a bit of the sort of DeFreitas-CDC protocol miscues that Cort wrote about recently.
 
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Klimas said that with XMRV results from WPI, suddenly virologists are interested. They have lab and money, but they don't have patients. So they are coming to her and other CFS docts to get the samples.

As the first one said, if nothing else, suddenly we have the attention of multiple researchers. Suddenly CFS is cool.

Tina
 

Hope123

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Totally stupid question: Dr. Bateman just said that having antibodies against XMRV does not prove that you have an active infection (my wording, not hers). But considering that a retrovirus will stay in your body forever, doesn't that prove that you have it in you? Active or not, it might become active at any time. Or is it possible that you had contact with the virus and your immune system was able to fight it off completely?

Edit: Ok, Kim's slide just answered this: It may be confounded...

This is a good, not stupid, question. After all, the first test used for diagnosing HIV is an antibody test so there is some presumption that if you have a positive antibody, it is likely that you have HIV. And most of the time, it's correct. The false-negative rate for the screening test is very low (unless you are in the window period). But because HIV is a serious diagnosis, it is always confirmed with a second test, the HIV Western blot, which looks for HIV proteins. I'm sure there are rare cases out there but it's pretty much if you have HIV antibodies, you have HIV infection, and will almost certainly need antiretrovirals. How good XMRV antibody tests will be compared to HIV no knows yet though.
 

Kati

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I was also a bit disappointed that there was no real new information beside that last slide showing post exertional markers that I couldn't make sense of and wasn't elaborated on.

Also the fact that Dr Bateman is not even testing for virus reactivations- it sounds like she is not doing any kind of treatment other than encouraging pacing, sleep hygiene and other basic stuff. It has been proven that patients with virus reactivation get better while on anti virals- Dr Klimas, Lerner, Montoya and Peterson will say that. Certainly the benefits are not permanent, but we all would like to get better for a few hours every day- wouldn't we?

Since a lot of us have heard Dr Bateman's presentation last fall, it would have been great to hear Dr Vernon and see what she has to say. Perhaps it would have been great to reverse the roles and see Dr Bateman as a moderator and Dr Vernon as the speaker.

Just my 2 cents. Awaiting for my XMRV results and viral reactivation.
 

Sing

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Graph showing biomarkers after exercise

I can add that Dr. Bateman said that she is willing to email copies of that paper with the graphs which is in the Journal of Pain to anyone who asks. Dr. Vernon, I believe, said that CAA would add this to their section on XMRV: www.cfids.org/XMRV/default.asp#info so we will have it!

She said that there is a great deal of collaboration and communication happening now among herself, Dr. Ila Singh who is an XMRV and prostate cancer expert at the University of Utah, and Alan and Cathy Light.

One question I have--she mentioned a Japanese study which showed that 1-2% of healthy controls have XMRV. Does anyone know of this study?

Thanks!

Sing
 

Dr. Yes

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Also the fact that Dr Bateman is not even testing for virus reactivations- it sounds like she is not doing any kind of treatment other than encouraging pacing, sleep hygiene and other basic stuff. It has been proven that patients with virus reactivation get better while on anti virals- Dr Klimas, Lerner, Montoya and Peterson will say that. Certainly the benefits are not permanent, but we all would like to get better for a few hours every day- wouldn't we?
Yeah, that surprised me too. Her point was that antibody testing is unreliable, but many have acknowledged that without disregarding those viruses altogether, especially because of the findings of HHV6 in nerve and other tissue in patients that had been negative for blood antibodies. (See the HHV6 Foundation website for some general info). Treatments relating to suspected viral infections could still help (and have helped some), and they aren't all as toxic as Valcyte. Plus, some patients are positive for viral testing, so not testing them at all seems irresponsible to me. (I was found to be acutely infected with HHV6 by a culture test; a few days prior to that my doctor at the time had given up on me and said my problems must be in my head because a couple standard viral antibody tests had been negative or inconclusive.)
 

jewel

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Hi all-- I was unavailable to watch this webinar, so I just want to thank Kim for posting the slides. The "exercise" study slides were amazing; I hope this approach continues to get studied/funded as much as virology studies. As always, the comments and analysis by everyone are thoughtful and detailed. I am just amazed as always at how much people with fatigue and mental fog can produce in their "good " moments. Thank you, Jule
 
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gerwyn morris

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Nice screenshots Kim! After not being able to turn off security software and restarting computer and trying again - I'll just follow the screenshots. Beautiful - I'll definitely use these :) I love Light's research.
I hope that they are published the confidence intervals look fine is there a p value or have i missed it----cant really generalise yet---the same result with larger numbers would be awesome
 

starryeyes

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This is from one of Cort's articles regarding that Exercise Study:

Quote about the Exercise Study: Beginning at 30 minutes after exercise and continuing at eight, 24 and 48 hours after exercise, CFS patients showed increases of the P type of ion channel receptor activity up to four times its pre-exercise level while healthy subjects showed no increase at all. These receptors seemed especially sensitive to fatigue. The graph of the results is incredible; with CFS patients, receptor activity skyrockets while the healthy controls' results stay essentially at zero.

The activity of a receptor called Type A that’s been implicated in pain doubled in ME/CFS patients who also had FM and showed no increase in healthy subjects at all. Sympathetic nervous system (adrenergic) receptors that detect SNS activity were increased 2-6 times.