Telebriefing is up and available to listen NOW: 5 pm EST

Bob

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* Dr. Lo gave a very good, simple explanation of the difference between polytropic and xenotropic (the difference between the polytropic MLVs they found and XMRV). He said a Polytropic retrovirus is able to infect mouse cells in additon to non-mouse cells (other animals), whereas Xenotropic can no longer infect mouse cells...it can only infect non-mouse cells. He went on to say that this actually strengthens or extends the WPI findings, because it is more characteristic of how other retroviruses work.
Well, this made me start thinking...
In relation to Brigitte Huber's presentation regarding her XMRV study, at the Invest in ME conference...
Prof Huber said that she couldn't find any XMRV in her samples, but that she tested positive for very similar viruses...
She put these findings down to contamination in her own lab...
But I wonder if she was in fact finding other MLV's.

After Huber's samples initially all tested negative, when using a highly specific assay based on XMRV taken from prostate cancer cells, she then tested them with another type of test (nested PCR). This gave some positive results. But after doing further studies, she said at the conference: "The final conclusion which we came to is that this was due to a contamination... Some reagent in our lab is contaminated."

I don't know what evidence made her come to the conclusion that it was a contaminant... I wonder if it was conclusive evidence.
 

Rrrr

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Some fragments of transcription:

Dr Alter:
"We think, basically, it confirms the findings of the Whittemore-Peterson Group."

"It does, at least, confirm the findings of Whittemore-Peterson...I think one wants to go back to their studies because they've had more time, and they've done extensive work...so their study is more advanced than ours, but -with that as...er...with them having done the groundwork I think our study is highly confirmatory of their work..."

Dr Lo:
"Our findings show that the more diverse group of virus there is compatible with the XMRV, the xenotropic one, but really not identical and more closely related to the polytropic group."

Q:
"Does the finding of a polytropic virus suggest a looser association with CFS than finding a xenotropic would have?...It would seem to suggest more of a process of chance than a firm association."

Dr Lo:
"No, actually this group of virus we call the polytropic MLV - this is actually more characteristic of a retroviral infection...in fact what we found is it actually gives us a very good confidence this can not be an arbitrary artefact from PCR or contamination because the sequences are so varied from one patient to another."

"They are in the same family but...they are compatible with the earlier finding of the XMRV, however they are not identical and they are more diverse."

Q:
And so is it usual that you would find an association with a single disease with this kind of a variety of viruses?

Lo:
"Yes, indeed, that's exactly what we anticipate for retrovirus infection...over time you will see the many different sequences there."

Alter:
"...The retroviruses...exist in big families of viruses...Hepatitis C is a very good example, nobody's infected with one variant... they have a whole huge family of variants...and if you take any given patient the patient will have multiple variants in them, and different patients will have different variants, so it's very characteristic of these kind of RNA viruses."

"Since the original publication the WPI and NCI groups have found that they too are finding greater variability in their patients so it is not just XMRV as in the original cohort of patients."

Lo:
"I think...we can say we found this kind of variability that's actually MORE consistent with the natural form of a retrovirus infection in this group of patients."

Alter:
(regarding the discrepancies between different groups):
"We think it's in the patient populations rather than the laboratory testing although the latter hasn't been completely ruled out...CFS is a syndrome, that's what it is, it's not a specific biopsy-proven diagnosis, and therefore it's subject to variability..."
Holy crap! I listened to the briefling twice and did not get any of this from it. What does that tell you about my ability to handle scientific information on an auditory level? THIS TRANSCRIPTION WAS EXCELLENT. Thank you.

My question: Does the above transcription essentially confirm that Dr. DeFreitis found this same family of retrovirus 20 yrs ago?
 

Rrrr

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The first few minutes was a summary of the paper and background on XMRV in CFS, given by Dr. Alter.

Then questions came in from the media for another 30 minutes or so. Most of my notes, however, are from the 1st segment.

Dr. Alter made a lot of interesting points that gave strength to the WPI findings. I found myself being very grateful for him and his defense of the WPI research. Some highlights from his summary:

* "[Given the findings of XMRV and its related variants] A better term is Meurine Leukemia Virus-Related Viruses, which emcompasses XMRV"

* They found a "Dramatic Association" (yes, he used the word "dramatic"): 86% in PWC's vs. 6.6% of healthy blood donors.

* "Have not [yet] proven causality....many many more pieces to fulfill"

* Confirms findings of WPI's Science Paper (later he amended his comments during the reporter segment to say Highly Confirmatory!, and also admitted that the WPI's research is more advanced because they have already cultured the virus in patients as well as having found antibodies in patients, which the NIH said was not part of this study, but they're working on it.

* Dilemma as to why CDC found nothing, time is simply needed to work this out

During the Q&A, I jotted down the following:

* A 2nd FDA guy (not Dr. Lo), responded to a question about whether there is currently an FDA approved test. He said (paraphrased) XMRV working group is tasked with solving standardization and validation issues for assays; but until then "no FDA Approved test is ready at this time", only assays used in the research setting are ready right now

* Dr. Lo gave a very good, simple explanation of the difference between polytropic and xenotropic (the difference between the polytropic MLVs they found and XMRV). He said a Polytropic retrovirus is able to infect mouse cells in additon to non-mouse cells (other animals), whereas Xenotropic can no longer infect mouse cells...it can only infect non-mouse cells. He went on to say that this actually strengthens or extends the WPI findings, because it is more characteristic of how other retroviruses work.

* Dr. Lo (or Alter, I can't remember) said another reason this Polytropic finding was important is that it gave them confidence that they were dealing with a real family of retroviruses and not a lab contaminant. Paraphrasing still: Because they found several mutations in patients, not just a single strain (like in the Xenotropic model), this makes the retroviral infection theory much more plausible for CFS. It's how other retroviruses behave. He said the WPI has since found more than one strain also (since the Oct. Science paper), so they are in agreement about that.

* Dr. Alter is currently doing another study testing 1000 blood samples to help solve the transfusion link by looking at frozen banked samples of known blood recipients. Data will be available soon. (He was saying it in the context of how to move the state of knowledge forward, so I got the feeling it was going to be good news...but I obviously don't know)

* Good ol' Dr. Steve Monroe from CDC was mostly silent on this call (as was humorously pointed out by Recovery Soon), but the couple of times Monroe did speak, it was classic CYA mode. It was transparent. The one quote I wrote down from him was that the CDC found zero XMRV or related MLVs in CFS [or healthy controls I might add], but he was oh so gleeful to add that they did find some in prostate cancer. You could almost hear him sweating bullets, and I think he was praying that answer would put all our minds at ease, once and for all. :rolleyes:

* One of the authors (or the 2nd FDA guy, I can't remember) concluded by saying that future studies, especially within the XMRV working group would be aimed at 1) causality and 2) vector of transmission

I sure hope the media can read between the lines and tell the accurate story here. Why did none of the reporters latch on to the reality that 4-7% of the healthy population have a dang retrovirus?!!!? and ask some hard-nosed follow-up questions? Here's hoping they will ask those questions soon since they missed their chance on this telebriefing.

No mistake about this, though: This NIH/FDA paper (which is already almost 5 months old!) is a huge step forward!

Now I guess it's back to waiting for the NEXT positive papers that are supposedly coming out soon. Maybe some good stuff in time to be discussed at the Sept. 7 & 8 XMRV conference?
Again, excellent work! Thank you OneWaySurvival!
 

Rrrr

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Would be interesting to know where/when these samples were taken. Both factors would appear to be increasingly importent given what I've been able to glean out of today's news.
the samples are from 15 yrs ago (tho some they re-drew the blood AGAIN this past summer, from the same patients: the same viruses were there, only they had mutated, as expected). and the samples were from dr komeroff's patients, a long-time harvard cfs researcher. they had been frozen 15 yrs ago. these were the same samples Dr. Lo used to try to find mycoplasma 15 yrs ago. there is a published study on that work.( but some of us were questioning if they were looking for the mycoplasma in a way that it could even be found. see the thread on Dr. Lo, somewhere on this forum for that study.)
 

Dolphin

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I recorded the whole thing. Just going to listen to it now.

I will convert it to mp3 so you guys can download it, but I don't know how to make it available. If someone is more web-savvy I will email the mp3 to you and you can make it available.

PM me or let me know here.
Julius sent me these:
https://www.yousendit.com/download/aHlTQk13Mm1ENlN4dnc9PQ
and
https://www.yousendit.com/download/aHlTQk13TXZPSHl4dnc9PQ

They will only stay there for a week as I only have a free yousendit.com account
 

Dolphin

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SOC

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Thanks Dolphin and villagelife. Managed to lie down with a pillow over my head and listen to it, it's all quite amazing!
Hey, does that really work? I have a terrible time processing audio-only complex info. Maybe I'll go get my pillow and listen to the telebriefing for myself. *grin*
 

LaurelW

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I'm would really like to know:
1. Can the polytropic MLV's found in the paper still be passed between mice and humans, as opposed to XMRV, which can no longer infect mice?
2. What is the health status of the 7 out of 8 people that they got fresh blood from that still have the virus?
3. Since this study seems to imply a faster mutation rate than was thought a year ago, could this have anything to do with the relapsing/remitting nature of the disease and why sometimes it changes over time?
4. How much evidence are the deniers such as Reeves, Wessely, McClure and ERV going to need before they finally give it up?
 

Sunshine

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4. How much evidence are the deniers such as Reeves, Wessely, McClure and ERV going to need before they finally give it up?
When it's proven infectious from person to person.

Once this is established, (as it was for HIV) if Reeves stated/wrote in 'research' as a CDC employee and 'expert' in CFS, that CFS was in your mind, then if you read this believing it not to be a lie and donated blood that infected someone then you could take legal action against the CDC for allowing their 'experts' in CFS (Reeves) for giving the public dangerous opinions on CFS.

He's already on shaky ground now by producing these appaling 'research' papers which easily manipulated people may well believe, or partners of people who are being asked to give blood. E.g. people can/will read Reeves views on CFS and present this to people they are trying to co-erce into giving blood to say it's safe. This is possible as XMRV/MULV can be present with no symptoms, that is the terrible danger of it. Someone may have little to no symptoms but be worried they could have CFS (undiagnosed) but be talked out of it (via CDC public disinformation), and go ahead and walk down the local blood bank.

People of easy influence or low IQ with CFS may believe they are mentally ill (from reading the CDC website) and therefore go ahead and give blood, even now. Not everyone with CFS and possibly MULV'S/XMRV will have a normal IQ or be psychologically robust. Viruses and diseases affect all types of people and of course, people are diverse.

You and I on this forum are not the average person with CFS. We have a strong interest in CFS advocacy and research. We know about CFS. Most people, do not. Many people are in denial and have nothing to do with CFS whatsoever. These people are walking time bombs. Some hate CFS and having CFS and may develop psychological issues to being in denial to the extent they purposefully give blood. This has happened in HIV in the past. There are people who die of cancer who are in total denial also and refuse any treatment. We all react to terrible news in different ways, and not always in a sensible and controlled manner. 'Trusting' CFS patients to know if they have XMRV/MULV without a test is a total disgrace. All patients with CFS, (even if they claim to feel 'well' on the day) should be banned for life from giving blood.

You don't have to be intelligent, informed, sensible and aware of your body and 'CFS' research to be a CFS patient, many are not like this. Similarly you don't have to be empathic, honest and caring to be a doctor. Psychopaths, sociopaths, and malignant narcissists can and do become doctors too. Dangerous doctors largely escape detection in practice, as patients are loathed to report them as patients need doctors and thus fear doctors, so they put up with strange or inappropriate comments that outside of the medical setting, would often get employees in serious trouble.

This mixture of CFS patients not being aware, not caring (due to mental breakdowns from decades of hatred over the label CFS), or being cognitively damaged through brain injury from XMRV and being unable to make correct judgements directly risks the blood supply, especially in combination of genuine hatred or dismissal of CFS patients by many doctors and medical professionals who would not stop a CFS patients from donating blood.

Reeves time is up and the CDC know it. Two more positive XMRV in CFS studies are coming up, the evidence is growing stronger so they will have to stop very soon or face legal ramifications from diagnosed CFS patients who can prove they caught CFS from infected blood given by a donor who thought there CFS was in their mind/posed no transfusion risk as they had no symptoms on the day of transfusion because the CDC and other government agencies never told CFS ME patients they had XMRV/MULV's or even offered a test for multiple decades, spreading the infection around the world.. They couldn't tell the public as they stopped Elaine DeFreitas's research (around 20 yrs back) to be able to find it, and as an influencial body if the CDC can't find something, few else bother to try or have funding to try. This nearly happened to XMRV, if it had not been for that brilliant 'leaked' paper. If that hadn't been leaked, then what? Officially the CDC said there was 0% finding. It would have been left like that.

When HIV was first shown to cause AIDS and a first treatment was available (AZT), countless people died unnecessarily due to doctors simply refusing to admit these horrible 'gay people' had something that should be treated. Homophobia back then was quite prevalent in society. The gay rights movement has changed that in western democracies to some extent. Tragically, there is no CFS rights movement as people are too sick to get out the home/or tolerate walking/exercise and especially stress these protests would involve. The only movement we have, is online and amongst ourselves and for that we had to wait for universal online internet access. CFS and ME were around long before the internet though. So we joined the story too late in our own demise. Too late to stop and change entrenched views about ME, which became CFS in the eyes of the deceivers.

Personal bias and discrimination is rife in the medical profession today.In the past HIV patients died due to disbelief and apathy in their masses, and a % of CFS patients have died over the years also and continue to do so. This theoretically could only stop, when doctors are not idiolised by the authorities and patients alike, but this cannot happen in practice. It is human nature to be submissive to someone who can protect your life and who you need to help you, yet this in turns give people on a power trip even more ability to run amock, especially with psychological theories on a disease with no diagnostic test.

An abuser always selects their prey, studies them well, and learns how to control them to be able to deliver sustained attacks that cannot be defended against. Controlling CFS was simple as it was sanctioned to be allowed to slate CFS patients as mentally ill, despite CFS never being classified a mental health illness.

Any governemnt health agency could have stepped in from day one, and said to people like Reeves and Wessely, 'what are you doing'? They said and did nothing and still actively encourage psychological theorists as it's cheap and turns attention away from a new public health disaster that will cost trillions to sort out.

'CFS' was the ultimate fantasy for someone with these ideas in the their heads, and this is why they cannot stop, even to this day. They are addicted, and still off the lead biting whoever they can who smells of CFS/ME.

I think WPI will tie the loose snarling dog to the fence and the authorities will come take it away and put it somewhere where it can't hurt anyone, any longer.
 

Megan

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Hey, does that really work? I have a terrible time processing audio-only complex info. Maybe I'll go get my pillow and listen to the telebriefing for myself. *grin*
It works for me. When I feel shit I just lie down in the lounge room and put something over my eyes and listen to podcasts. Must admit this one was a bit more challenging than most!
 
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It sounds to me like they had a different technical approach from WPI. WPI was testing several different ways, and culturing the virus, so they were looking at infectiousness. After their paper they started sequencing. Lo might have different technology, or database and he went to looking at sequences first. So they are complementary.
My impression was Dr Lo has been aware of this retrovirus for a long time and had been studying it. Especially considering he came out with detecting all these different variations of the virus. I think they are way ahead in htier understanding of CFS then they are letting us know.

Anyways. all good news because of the upcoming studies, and hopefully treatments.
 

CBS

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I'm would really like to know:
4. How much evidence are the deniers such as Reeves, Wessely, McClure and ERV going to need before they finally give it up?
Hi Laurel,

I don't have answers for your first three questions but I suspect that that 'answer' to your fourth question is that no amount of evidence in the world will convince some people. What I suspect will happen is that those who cling to their outmoded views in the face of a growing body of evidence will find themselves closer and closer to the fringes, much like the AIDS deniers who still question the role of HIV in AIDS. As for Reeves, Weesely and others, I'm finding it harder to care if they embrace the new research and easier to dismiss them as they marginalize themselves.
 

pine108kell

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I'm would really like to know:
2. What is the health status of the 7 out of 8 people that they got fresh blood from that still have the virus?
I'm pretty sure I read they were all still ill, even the one that tested negative. I don't know where I read that or how ill they still were. Not a good answer, but I noticed no one else provided one yet.
 

LaurelW

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Thanks, CBS and Pine. I haven't read the whole Alter paper yet--I'm sure there are lots of tidbits in there. I'm finding it hard to care too, except when it affects me directly, such as my access to healthcare etc.
 
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With Lo and Alter on our side, who can be against us?

I really do think the whole attitude at NIH and FDA has turned. They are doing the Lyndoville study. And in that, the application assumes XMRV is in the blood of those patients. Also, in this telebriefing, they said they were testing 1,000 blood samples. (I think that is where I heard it. Or was it Mindy's blog?)

Tina
 

ahimsa

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(if this is a duplicate then please delete - thanks!)

I saw a few partial transcriptions of the briefing but after scanning this thread I didn't see a link to the PDF for the full transcript of the FDA briefing. So, here it is (found the link on the Whittemore Peterson Institute web site, on the news page):

http://www.wpinstitute.org/news/docs/FDAbriefing_082310.pdf

For those of us who can absorb information much better when reading than when listening this is a great alternative (although be prepared for plenty of typos and misspellings!).