• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

A Man From Whom Viruses Cant Hide

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
George, I tend to agree with you (that the "loose lips sink ships" attitude will only lead to a bigger hoopla later) but honestly, I don't think anybody really knows how to proceed in a situation like this. Scientists aren't used to having agitated patients breathing down their necks via the internet, and agencies have their own agenda, part of which is bureaucracy and politics but part of which is also the responsibility of saying anything "official." Agencies can't act on preliminary results and they can't advise doctors, patients, and the general public about what to do at this point. There's a much larger question here about how science proceeds, how information gets shared, etc.

I hates waiting as much as the next puppy, bird, flower, or Little Dummy (tm) But it's possible that a big stink when everything finally comes out would have some beneficial effects - more press attention, more general awareness (even if the info gets garbled, as it inevitably will), perhaps more outrage on behalf of the ME/CFS sick who have been shelved for decades without any good faith, well-funded effort going forward to actually study the biological side of the disease...A scandal might be more fun than you're expecting. ;)
 

jenbooks

Guest
Messages
1,270
By the way, I am a fan of Zimmers on facebook, and this is what he wrote yesterday on his FB page:

Blogs / The Loom
The traffic jam in your head (now with Slashdot goodness)
The empire of viruses: my story in tomorrow’s New York Times
submit to reddit . .


Recently I paid a visit to a place where the world’s most mysterious viruses go to find a name. The result was my profile of Ian Lipkin of Columbia University for tomorrow’s New York Times. I first started thinking about this story when I heard Lipkin give a lecture about his work identifying unknown viruses this spring. And when I read this review of Lipkin’s, entitled simply, “Microbe Hunting,” I knew it was time to get cracking.

One thing I didn’t have room for is the fact that Lipkin has gone all Hollywood. By which I mean that he’s helping Steven Soderbergh on a new movie on a virus outbreak called Contagion, starring Matt Damon, Kate Winslet, and other big stars. Lipkin seems pretty stoked about the movie, which is slated for 2011, so I’ll definitely be keeping an eye out for it.
--

So folks, that's why he wrote the story. And folks, Carl Zimmer can mostly write the stories he wants. He's one of the best out there. Stop second guessing.

And please be relaxed and optimistic if at all possible.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
These kind of discussions make my head spin... speculations, second guessing, mind reading, optimism vs pessimism...

Jeeeeez, it's just an article, not the end all and be all of XMRV research finalized.

We will just have to stay tuned for the coming attractions, while keeping in mind that the main feature is still under production.
 
Messages
96
Location
Chicago
By the way, I am a fan of Zimmers on facebook, and this is what he wrote yesterday on his FB page:

Blogs / The Loom
The traffic jam in your head (now with Slashdot goodness)
The empire of viruses: my story in tomorrow’s New York Times
submit to reddit . .


Recently I paid a visit to a place where the world’s most mysterious viruses go to find a name. The result was my profile of Ian Lipkin of Columbia University for tomorrow’s New York Times. I first started thinking about this story when I heard Lipkin give a lecture about his work identifying unknown viruses this spring. And when I read this review of Lipkin’s, entitled simply, “Microbe Hunting,” I knew it was time to get cracking.

One thing I didn’t have room for is the fact that Lipkin has gone all Hollywood. By which I mean that he’s helping Steven Soderbergh on a new movie on a virus outbreak called Contagion, starring Matt Damon, Kate Winslet, and other big stars. Lipkin seems pretty stoked about the movie, which is slated for 2011, so I’ll definitely be keeping an eye out for it.
--

So folks, that's why he wrote the story. And folks, Carl Zimmer can mostly write the stories he wants. He's one of the best out there. Stop second guessing.

And please be relaxed and optimistic if at all possible.

hey this movie is being shot in Chicago two of my friends are extras in the movie they were shooting last week....it's supposed to be a good movie..
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Bob, it's all good, don't sweat it. (grins) and thank you for the "sorrys" that's really sweet. (Licks and wags)

I do have a negative opionion of how the NIH is dealing with this. It's just shades of stupidity all over again (HIV) but the practice has made the people in charge of spin much better at it this time around. But I'm very positive about XMRV and what it means to the ME/CFS community. It may be important in the next year or so for the ME/CFS community to band together and push and to get other groups that are infected to push with us. The breast cancer study was never published. I have a small mass in my left breast. My doctor tells me it is nothing to worry about. If XMRV is pro-inflammatory and the mass becomes an aggressive tumor my doctor will have no clue to even look in that direction. He has no clue right now and I have nothing to "show" him to help him along the way. So yeah, I'm a little pissed about the way things are being handled. (growls)

Hi George,
I totally understand why you are pissed about it all...
The whole process is so secretive, with no transparency or accountability.
I wasn't defending the secrecy, I was just being my usual ever-optimistic self about the eventual outcome, based on my understanding of the details of the government studies.
I don't think any of us expected to have no complete follow-up confirmation study for XMRV this far after the WPI's first study.
I understand why you are worried about the lump in your breast... I wish we knew what treatment Andrea Whittemore was undergoing, because she seems to be experiencing some success.
Take care,
Bob
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
These kind of discussions make my head spin... speculations, second guessing, mind reading, optimism vs pessimism...

Jeeeeez, it's just an article, not the end all and be all of XMRV research finalized.

We will just have to stay tuned for the coming attractions, while keeping in mind that the main feature is still under production.

Ahhhh, but that's what this is all about. Will we get the coming attractions or will that nice breast cancer study ever be published, and how about that cervical cancer study? (eyebrow wiggles and big grins)
 

Gemini

Senior Member
Messages
1,176
Location
East Coast USA
We should focus, I think, on the fact that Lipkin is collaborating with the WPI and the NIH/FDA lab that found pMLV's. He is not doing this alone - he is doing it in conjunction with those labs; neither of which would have signed onto this if they thought something was fishy.

Cort,

Good point. Dr. Mikovits, during Q & A's at the October 17th NJCFSA conference, said she, Dr. Alter, and Mr. Switzer wouild be meeting with Ian Lipkin on November 4th.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Bob,

I think collecting what do DO know about the Lipkin study would be helpful because I've seen bits and pieces but mostly without references, etc.

I've gathered the relevent info about Lipkin's study, and the BWG study, and like I mentioned earlier, I find it very reassuring...

Lipkin Study

Basically, Lipkin says that even if the WPI are the only group, in his study, who can detect XMRV in the samples, and they can detect it at consistent rates with blinded samples, then that's the only result he needs. And I imagine that a generous margin of error will be allowed for the initial study, so they won't have to be 100% correct for all the blinded samples.

Lipkin, on his way to Vietnam for a conference on emerging infections, tells the Health Blog that in addition to different definitions of CFS, possible explanations for the conflicting findings include the way labs process the blood samples or the tests they use.

The new study, Lipkin says, will involve fresh blood samples from 100 CFS patients and 100 similar, but healthy people — 25 of each group from four different sites around the country, to provide geographic diversity. The samples will be processed, blinded and sent to the FDA, the CDC and the Whittemore Peterson Institute, which led the team that published the original Science paper. If a lab finds a sample is positive for XMRV, further tests will be needed to confirm the result. If one lab finds a positive sample but another lab doesn’t, the same samples can be shipped again, with a new blinded code, to be tested again. “If you get the same result, it is valid,” Lipkin says.

He adds that it may turn out that certain labs are simply more proficient than others at finding XMRV and related viruses. And he says he’s open to whatever the outcome is, which is one reason why NIAID asked his group to run the study. “We have no horse in this race,” he says.

http://blogs.wsj.com/health/2010/09...atest-xmrv-study/?KEYWORDS=amy+dockser+marcus

And I also read that the patients he is using will fit the Canadian consensus criteria, and the patients would have to have had sore throats or tender lymph nodes when they got ill (I'm not clear about the details here, but I think that Judy basically insisted that the patients have what we recognise as definite ME, and not another type of fatiguing illness.)

Ah, I've found the quotes:

...the study will seek to enroll people who in addition to meeting criteria for two widely used, symptom-based definitions of CFS, showed signs of infection — such as a sore throat or tender lymph nodes — around the time they developed CFS. The thought is that if there is a viral link to CFS, it’s most likely to show up in those patients.

http://blogs.wsj.com/health/2010/11...-search-for-xmrv/?KEYWORDS=amy+dockser+marcus

And here's the other source of info that I was looking for...
It's one of Cort's recent 'XMRV Buzz' entries...

Nov 18th

Amy Dockser Marcus recently told us that Dr. Lipkin called together representatives to discuss his study about 2 weeks ago. Now we're getting a few telling details - or rather we can infer a few telling details. She notes that clinicians from Miami, Boston, Palo Alto and Salt Lake City will be involved which can only translate to four of our top physicians: Dr. Klimas, Dr. Komarroff, Dr. Montoya and Dr. Bateman. (Do you think they know a person with CFS when they see one?)

Dr. Lipkin will be taking a broad sweep of the viruses - looking for XMRV and all over viruses in the same family. Patients will have to meet two criteria, which given the physicians involved, can only mean the Fukuda AND the Canadian Criteria PLUS they will have to have infectious onset which means the patient cohort will closely duplicate the original patient cohort in the Science study - which is, of course, what we want. Three labs will test the blood -the WPI, the FDA/NIH (Alter/Lo) and the CDC.

ME/CFS experts providing 'good' ME/CFS patients and using two of the only labs to actually find XMRV? This looks like an excellent study.

http://aboutmecfs.org/Rsrch/XMRVBuzz.aspx

http://blogs.wsj.com/health/2010/11...-search-for-xmrv/?KEYWORDS=amy+dockser+marcus

I also thought that I'd read that Lipkin will be using samples from Cheney's and Bell's patients, but I can't find a quote for that, and I'm not 100% sure that I did read it... If I find the quote, I'll post it here.


Blood Working Group

I think that the blood working group is carrying out similar, and even more thorough work than Lipkin, and they intend to do it on a larger scale...

And remember that the BWG is well past it's initial phase now... They've already detected XMRV in phase I, and they couldn't have done this if XMRV does not exist or if it's just a fantasy rumour virus... From the quote below ("All the labs were able to detect at least some amount of XMRV"), it seems evident that the researchers involved in the BWG know that this is a real virus they are dealing with.

The quotes, below, also show how the WPI are intrinsically involved with the BWG, and show how reasuringly thorough the BWG research is.

In this phase, six labs — two from FDA plus labs at the NCI, the CDC, the Blood Systems Research Institute and the Whittemore-Peterson Institute — used a panel of blood samples spiked with different amounts of XMRV to establish if the labs’ tests are sensitive and reliable enough to detect the virus in blood. They are. All the labs were able to detect at least some amount of XMRV. (Some of the labs have been involved in the dueling research on a link between the virus and CFS.)

The presentation — which the Health Blog previewed ahead of the meeting — suggests that the first phase of the study has some limits. As researchers continue to study XMRV, there is a growing sense that virus taken from patients may be different than the virus the labs studied. That’s why, researchers say, it’s important to start looking at what’s going on in actual people.

That will happen in future phases of the working group’s investigation. In a pilot study of the second phase, WPI collected blood from four CFS patients they had found to be XMRV-positive and sent the samples to CDC and NCI for testing. Results are expected soon. In the third phase, WPI will collect 25 samples from XMRV-positive CFS patients and send them — as well as XMRV-negative samples from healthy people — to all the other labs for testing.

Phase four will analyze blood from 300 blood donors, 25 confirmed XMRV-positive patients, and 30 XMRV-negative samples from 10 independent blood donors. This data will finally get researchers a little closer to answering at least one of the key questions in the still-unfolding drama: Is XMRV widespread in the nation’s blood supply?

http://blogs.wsj.com/health/2010/07...e-to-hear-about-xmrv-working-groups-research/

...the Blood XMRV Scientific Research Working Group is taking a three-stage approach to its handling of the issues related to XMRV and the possible link to human disease. The first stage will be to standardize and validate laboratory methods and reagents for XMRV testing. This is important since variations in sample collection and laboratory procedures can produce discrepant results. These standardized approaches will be used initially to test 1,200 healthy donors’ blood samples and 100 CFS patients’ blood samples collected by Dr. Judy Mikovits of the Whittemore Peterson Institute. Stage two will assess the prevalence of XMRV in the general population and blood supply, as well as in other CFS patient cohorts. The third stage will be a series of studies to understand how XMRV is transmitted, whether it causes human disease, and how it affects various subgroups of the population.

http://www.cfids.org/cfidslink/2009/120203.asp

According to CDC, their studies using samples obtained from the Whittemore Peterson Institute have HHS attention. The Laboratory Branch in CDC’s Division of HIV/AIDS Prevention is doing the XMRV testing and not the CDC CFS research group in the Division of Viral and Rickettsial Diseases.

http://www.cfids.org/cfidslink/2009/120203.asp
 

Navid

Senior Member
Messages
564
i too at this point have faith that Lipkin has good intentions and is not involved in a conspiracy to cover things up. especially since WPI is involved. He is also working with Dr. Montoya, who takes our disease very seriously, and finally he has close connections with Dr. Singh, who as we all read yesterday knows what she's doing and is working hard and fast.

On the other hand....many have walked/crawled this long and twisted road for years....it's difficult to trust after years of deceipt, humiliation and being swept under the carpet. That is the history of this disease, and how people with the disease have been treated.

i would think us a naive group, if we did not hold Lipkin and everyone involved in studying the disease to the highest standards at this point.

someone wrote this in one of the many posts on this thread: in other terms, if you had a choice of James Bond or a green recruit to the CIA, who would you prefer?

well, if James Bond has been double agent for years: lying and cheating, then I'd rather have the green, new agent.

we just don't know yet, if we have a good guy or someone who is going to lie and cheat us of our right to proper healthcare/treatment.

All these new ppl working on me/cfs need to gain our trust and as i stated in the beginning, after years of abuse it is very difficult to trust again.

We trust Dr. Judy, Dr. Singh, Dr. Montoya...we need to learn if we can trust Dr.Lipkin, Mangan and Fauci.

I hope in the end Lipkin confirms WPI's initial findings and they all work together to find us a treatment ASAP. They can all be heroes in my eyes.

Bob: thanks for your nice summary.

Happy Thanksgiving!!!!