News of replication of WPI XMRV study...

[MEKoan]

Excerpt from Stephen Crane's 'The Open Boat':

"If I am going to be drowned--if I am going to be drowned--if I am going to be drowned, why, in the name of the seven mad gods who rule the sea, was I allowed to come thus far and contemplate sand and trees?"

During this dismal night, it may be remarked that a man would conclude that it was really the intention of the seven mad gods to drown him, despite the abominable injustice of it. For it was certainly an abominable injustice to drown a man who had worked so hard, so hard. The man felt it would be a crime most unnatural. Other people had drowned at sea since galleys swarmed with painted sails, but still--

When it occurs to a man that nature does not regard him as important, and that she feels she would not maim the universe by disposing of him, he at first wishes to throw bricks at the temple, and he hates deeply the fact that there are no brick and no temples. Any visible expression of nature would surely be pelleted with his jeers.

Then, if there be no tangible thing to hoot he feels, perhaps, the desire to confront a personification and indulge in pleas, bowed to one knee, and with hands supplicant, saying: "Yes, but I love myself."

A high cold star on a winter's night is the word he feels that she says to him. Thereafter he knows the pathos of his situation.

Thank you, Bluebird, this is so apt.

 

[PoetInSF]

What I understood from the posts here was that the WPI had initially focused on outbreaks to identify XMRV, and had then moved on to random samples from Fukuda/Canadian to test the connection.

I'm mostly interested in their published study, not subsequent unpublished claims. 101 samples that they tested for Science paper were mostly from outbreak areas, as I understood from NCI website. But I'll go back and read this thread completely when I have time to see if I missed anything. (There are awful lot of postings here and I don't have time/energy right now).

In any event, CDC said they will include WPI samples in their testing so it won't be totally bipartite sampling at least. If there is discrepancy, it will have to be a matter of magnitude, not validity, assuming WPI study is valid within its sampling universe.

 

[usedtobeperkytina]

Unless

Unless of course, WPI spiked the blood.

Just kidding folks. Although this affects me personally and I want to see it validated, the mystery writer in me ponders over the possibility of a strange twist. It is already like a mystery novel.

Tina

 

[anne]

101 samples that they tested for Science paper were mostly from outbreak areas, as I understood from NCI website.

I don't think this is true. Here's what the WPI says:

The WPI repository samples came from patients who live in many different locations around the US. Physicians who contributed patient samples include: Dr. David Bell, Dr. Paul Cheney, Dr. Daniel Peterson, and Dr. Eric Gordon. Other individual patient samples came from individuals who became ill while living in California, Wisconsin, South Dakota, etc.

Of course when you see Peterson and Bell, you think outbreak. But their current (or former in Bell's case) saw patients from all over the country for years and years. The WPI has 8000 blood samples in its bank, collected from 2006-2009 (according to the website). I think the idea that these were all outbreak cases was a rumor that started based on an assumption someone made. (There was also a rumor that some had lymphoma, but that's not true either.)

Ah, in fact, the website goes out of its way to say NONE of the Incline Village cohort was used in the Science study. So, there you go.

Dr. Peterson has a repository of samples from the original out break in Incline Village, Nevada which also includes longitudinal samples taken from patients from the 1980's through 2005. None of these samples were used in the XMRV study.

 

[kurt]

rumors can have a purpose

Well, it's only rumor I now report, but a prominent scientist here in NY says his colleagues tell him XMRV and CFS is not panning out. I didn't ask for specifics and don't know if I should even post this but indeed caution is warranted until we get peer-reviewed confirmation. And even then we would need to know how causative the virus is.

I still have high hopes for it although in my case I'm not sure it applies. My case is so obviously sudden onset after a tickbite and bullseye rash, however I still wonder how many bugs were in that tick.

Based on what I have heard, from some pretty well-placed sources, I believe this.

Leaks and rumors are sometimes ways to prepare people for the truth, which may not be what people want to hear.

What I want to learn about XMRV is the truth, I don't care if that is what people want to hear or not.

So IMO the proper scientific process must be allowed to run its course, and we should not be interfering with that in any way. Speculation is fun but irrelevant to data. I have said on other threads and really believe that investing emotionally in XMRV as the answer to CFS is risky at this point.

Until MANY replication studies are completed we will not have a complete picture of XMRV in CFS.

 

[dannybex]

With respect to the original poster...

...unfortunately, the title of this thread is somewhat misleading.

There is no news of that the study has been replicated, and in fact it will probably take at a minimum six to nine months before any new independant study could be peer-reviewed and published...don't you think?

???

 

[cfs since 1998]

Although this affects me personally and I want to see it validated, the mystery writer in me ponders over the possibility of a strange twist. It is already like a mystery novel.

True. If you're a member of the general public though or especially a CDC employee, I'd say XMRV is already a "strange" twist.

There is no news of that the study has been replicated, and in fact it will probably take at a minimum six to nine months before any new independant study could be peer-reviewed and published...don't you think?

Sounds about right.

 

[rebecca1995]

NCI and Cleveland Clinic have tested "unrelated cohorts"

From the transcript of Dr. Peterson's presentation at CFSAC (http://aboutmecfs.org/Rsrch/XMRVPeterson.aspx):

Now subsequent to the Science article additional studies were done at the NCI and the Cleveland Clinic using entirely unrelated cohorts in another laboratory. This was obviously an initial validation study. The results of that were just recently analyzed and 9 of 15 of those patients were positive by the PCR technology. 13 of 15 or about 87% positive by the co-culture technique and the plasma was positive in approximately 53% by that technique. So this was independent validation outside of the WPI laboratory.

I assume Dr. Peterson is talking about a CFS cohort! If so, then 60% (of 15) were positive by PCR--not too far from the 67% of the Science paper. Obviously this is not a full replication study, but it shows that other labs have at least seen XMRV in patients other than the original 101. It's a good start toward replication.

p.s. Sorry if this was already mentioned...I've read the whole thread but am out of it.

 

[Esther12]

Based on what I have heard, from some pretty well-placed sources, I believe this.

Leaks and rumors are sometimes ways to prepare people for the truth, which may not be what people want to hear.

What I want to learn about XMRV is the truth, I don't care if that is what people want to hear or not.

So IMO the proper scientific process must be allowed to run its course, and we should not be interfering with that in any way. Speculation is fun but irrelevant to data. I have said on other threads and really believe that investing emotionally in XMRV as the answer to CFS is risky at this point.

Until MANY replication studies are completed we will not have a complete picture of XMRV in CFS.

I'm not going to assume XMRV is the key to recovery unless I've recovered!

But if the replication studies are looking like they're not panning out, I'd really like to know as soon as possible, even if it is all rumours. 6-9 months of thinking they're on to somthing compelling, only to have it turn out to be nothing, would be unbearable.

Even if people only have rumours they don't want to share publicly, I'd be grateful for a confidential PM with any possible info.

 

[MEKoan]

It matters so much which, if any, studies are not panning out.

Who's doing it, how are they doing it, where are they doing it, why are they doing it...

I don't want to go on any kind of emotional journey without knowing this. I don't want to go up and down in accordance with unsubstantiated rumours. It's hard enough to be patient as it is.

I'd like to know where this came from if anyone feels able to share.

ETA: "Leaks and rumors are sometimes ways to prepare people for the truth, which may not be what people want to hear."

I think that's very bad practice. If you want to prepare people you give updates, you don't start rumours. If you want to shape opinion by shaping expectations, you start rumours.

 

[jenbooks]

Rumors

If you want to prepare people you give updates, you don't start rumours. If you want to shape opinion by shaping expectations, you start rumours.

Well I may have done it precisely for that reason--I mulled it over. I highly respect this person but I don't feel right in taking a private interaction public. OTOH I felt like, if I don't let folks know this, and it *does* turn out to be true, they'll be in for a hard fall. I didn't want to upset anybody, so I stated it as a rumor, and just reminded us all that we need to be cautious at this point. It will take some time to sort out anyway. Different groups will need to try and replicate, and then we need to determine what genetic vulnerabilities are involved, if that *can* be determined, and then what safe treatments there might be.

I have been as interested in anybody in the research, but probably more for the effect it has had on sick and well people. It seems to have legitimized CFS. Sick people feel legitimized, and well people seem interested. Not really lyme though--battles still going on there....but personally, I'd rather have a mean virulent spirochete than a retrovirus, so for me, I am not particularly thrilled personally about the prospects and besides I have a hunch they may not be relevant to my case. If something integrated into my genome I wouldn't be too happy about that...whereas others have been so excited, I've personally been hesitant to even think about the implications. When I do, I say to myself, Oh yeah, Jurassic Park, life will find a way----ie monotherapy is going to be dangerous even with a "low" mutation rate IF this virus is causal for a significant proportion of people. It will mutate. And retroviral drugs don't seem like a walk in the park anyway.

 

[MEKoan]

Hey Jen,

Well, it is very relevant to my case and I've been on the roller coaster for 30 years. That's a long, long ride. I dont' know how many more upsidaisies I've got in me. Dealing with all the emotions of a potential answer took every ounce of emotional equilibrium I have.

Riding out this rumour is waking me up in the middle of the night full of dread. For the first time in a very long time, I can't breathe myself back to sleep. I have discovered how vulnerable I am. I can absolutely withstand finding out it's not panning out but I can only weather that once. Well, I guess I could do it more than once but I absolutely choose not to. I just don't have the strength to rehearse it and then do it.

I may drop out for a while because now I find myself really drawn to this thread and I don't like the mixed state I create in myself.

You're not the only person who has heard this and passed on the information. I'm not saying it's the right or wrong thing to do. I don't know what I would do, myself, in your situation. Many people welcome it, I'm sure, and some may prefer any information to no information. Personally, I just don't want to ride. I want to wait.

Peace out,
k

ETA I totally hear you re the implications of a life-long retroviral infection. Those of us who feel we fit neatly into the ME/CFS box are dealing with very complex emotions. I know I am.

 

[Sing]

Study Patients

I don't think this is true. Here's what the WPI says:

The WPI repository samples came from patients who live in many different locations around the US. Physicians who contributed patient samples include: Dr. David Bell, Dr. Paul Cheney, Dr. Daniel Peterson, and Dr. Eric Gordon. Other individual patient samples came from individuals who became ill while living in California, Wisconsin, South Dakota, etc.

Of course when you see Peterson and Bell, you think outbreak. But their current (or former in Bell's case) saw patients from all over the country for years and years. The WPI has 8000 blood samples in its bank, collected from 2006-2009 (according to the website). I think the idea that these were all outbreak cases was a rumor that started based on an assumption someone made. (There was also a rumor that some had lymphoma, but that's not true either.)

Ah, in fact, the website goes out of its way to say NONE of the Incline Village cohort was used in the Science study. So, there you go.

I appreciated this message, Anne, both for the information and your tone--very steadying--

Cecelia

 

[jenbooks]

Hi Koan I see your point. I wanted to protect people from a hard fall if there would be one (it may be that the results pan out! Or at least partially). When I heard that news I became anxious that so many people put themselves on the line so early (including the wonderful Hillary Johnson).

But I didn't confirm it--ie I did not ask which scientists where and when and may I speak with them? I just am not in a position to do that...I don't feel so anyway.

I'm sorry it's causing you anxiety (the rumor). I guess it's ramping up the "what if" that you speak of in regards to buddhist practice. The anxiety from "how come" and "what if"...uggggg....

The problem is there's no really good answer except a time machine to undo the moment one fell ill, by whatever means....

 

[MEKoan]

Hey Jen,

I see where you're coming from. As I said, I don't know what I would have done in your place.

I just don't put myself in the path of unnecessary drama and for me, and I speak only only for me, this is unnecessary. I will wait without speculation, without what if. I'm just gonna wait and see what is.

Peace out,
k

 

[kurt]

replications and stuff

...unfortunately, the title of this thread is somewhat misleading.

There is no news of that the study has been replicated, and in fact it will probably take at a minimum six to nine months before any new independant study could be peer-reviewed and published...don't you think?

???

Actually, 6-9 months to publication was very fast for a mainstream journal, I was a researcher before CFS and have sometimes waited over two years to get an article peer-reviewed and published.

But, while that wait time might be true for a publication in a journal like 'Science,' as others have mentioned, today there are many rapid publication outlets for peer reviewed studies, including online.

I believe we could see the first independent studies much sooner than 6-9 months. A PCR study can be completed in a month or less, once the samples are collected. If a new PCR test is designed, which would be a good idea for any credible confirmation, then add a little time for that, but how much time depends on the sophistication of the lab, some are very fast. Then the write-up is a month or two, rapid peer review can be another month. So maybe 3-4 months, starting from the initial Science article. Doing the math, we might see an online publication of a peer-reviewed study in just a few months, maybe as soon as mid December or early January.

From the transcript of Dr. Peterson's presentation at CFSAC (http://aboutmecfs.org/Rsrch/XMRVPeterson.aspx):

I assume Dr. Peterson is talking about a CFS cohort! If so, then 60% (of 15) were positive by PCR--not too far from the 67% of the Science paper. Obviously this is not a full replication study, but it shows that other labs have at least seen XMRV in patients other than the original 101. It's a good start toward replication.

p.s. Sorry if this was already mentioned...I've read the whole thread but am out of it.

While that replication was at a different lab with different samples, I believe the same testing procedure was used. Therefore, any problem with the WPI testing would be carried forward in the NCI part of the WPI study. Thus the need for outside confirmation using different test designs.

If XMRV is really there in all PWC, then it should be found by pretty much every lab using most of the different types of tests available. There are over 20 different PCR tests and they are not all the same. According to a biomedical researcher I talked to, the test used by WPI was not the most sensitive or reliable form of PCR, so confirmation is very important in this case. Also, there is some question about the antibody study and possible contamination (from other MLV type species), this was mentioned right in the Science article.

 

[bluebird]

One does end up taking it personally...

Ty, jen, Cort, beloved Koan, everyone, anyone..for appreciating the quote and understanding what I meant. I DO take it all so very personally.

And because this is so, I have developed a coping mechanism of remaining highly skeptical. I rigorously critique the meaning behind the meaning of whatever I read per CFIDS/ME/XAND. This is how I've protected myself from the false promise of cures that have been hyped for decades now.

But with that said, I do NOT discount what XMRV as causal agent might mean to me, to all of us. I WANT to believe. ( lol, are we talking UFO's here? I pray not! I want it at last to be an IFO, an IDENTIFIED flying object.)

I just scrutinize everything anyone ( no matter how credentialed) says about CFS/CFIDS/ME/XAND/XMRV.

That is not to say that I am not excited. I am so excited that I made myself very sick for six weeks after the Oct 8th Science article was published.

Now I am back in chill mode. I have to chill to survive.

 

[Kati]

Now I am back in chill mode. I have to chill to survive.

Blue bird, don't put yourself on dry ice at -80 for 25 years!!!

 

[bluebird]

Ty Kati for the sentiment. But if that is what it takes to survive then this is what I will do. I have been extremely sick ( ie supine ) for almost 20 years, and before that it wasn't a picnic. I won't stop now.

And that is it for me on this thread, I think. Hugs all around.

 

[anne]

If XMRV is really there in all PWC, then it should be found by pretty much every lab using most of the different types of tests available. There are over 20 different PCR tests and they are not all the same. According to a biomedical researcher I talked to, the test used by WPI was not the most sensitive or reliable form of PCR, so confirmation is very important in this case. Also, there is some question about the antibody study and possible contamination (from other MLV type species), this was mentioned right in the Science article. ]

Kurt, I know nothing about this stuff, so can I ask you a couple of questions? The German study that didn't find XMRV in prostate cancer--the XMRV people here said their test wasn't sensitive enough (or something, does anyone remember?) It seems testing for XMRV itself is a difficult business, so is it possible if people aren't finding it their test isn't good enough?

Also, on the contamination issue--say the WPI samples were contaminated. How, then, does that deal with the Cleveland Clinic and NCI replications--because their samples were separate, right? They can't all have mice running higglety-piggelty over their blood samples. (Kidding.)

Again, I truly don't know the first thing about any of this and am trying to understand.