Original Science Cohort Questions

[anne]

Why not just email them and ask?

 

[Andrew]

Why not just email them and ask?

I think that's a good idea.

 

[George]

My understanding was. . .

I thought that the patient that he was referring to at CFSAC or WPI-1125 was part of the supplemental study. The supplemental study is not part of the original Science patient cohort. The Lymphoma patients were part of the supplemental study not part of the original which is where the reporter got it wrong. Simple enough because they did release both study's at the same time.

Is that incorrect???

 

[Cort]

I think it is a good idea to email them. I believe the supplemental section of the Science paper simply give more details on the study.

These are patients that have been seen in private medical practices, and their diagnosis of CFS is based upon prolonged disabling fatigue and the presence of cognitive deficits and reproducible immunological abnormalities. These included but were not limited to perturbations of the 2-5A synthetase/RNase L antiviral pathway, low natural killer cell cytotoxicity (as measured by standard diagnostic assays), and elevated cytokines particularly interleukin-6 and interleukin-8.

My take on this is that they all had these reproducible immunological abnormalities; ie. 'these included'..... I guess you could say that they were basing their 'diagnosis' on these things and that they might not all have had them....I don't know - it looks to me like you need to have those things to have CFS by their standards.

It's amazing how sticky the cohort side of the equation is! The lab side was fantastic - I went over the paper again; I was amazed at just how much they did. That is, of course, the most important part. The second most important I think is how many people do the lab results apply to - which is what this post questions. Man its going to be great to see those studies finally coming out .

I've wondered for awhile is the people maintaining the website/Facebook are not always the same people doing the studies. I suppose it would be surprising if they were.

 

[anne]

It feels like there's a weird tenor of conspiracy theory here, and I'm not really sure what the conspiracy would be. The fact that the website has been updated with more information isn't exactly suspicious. I don't know what this is, but it either be a mistake on whoever is building the websites or a misunderstanding on ours, and that seems more likely than some kind of attempt to deceive, inveigle, and obfuscate, yes?

 

[ABarker]

"WPI-1125" is in the original Science publication, as well as in the Supplemental material. In the original Science paper, it is on page 5, group A, the 7th sample from the left. It is also mentioned in 2 places of Dr. Peterson's CFSAC slide-show. One of the slides contains all of the medical info about "WPI-1125".

If it can be hosted here or somewhere else, I'll gladly share it. It was available for the public at the CFSAC.

 

[fresh_eyes]

...and that seems more likely than some kind of attempt to deceive, inveigle, and obfuscate, yes?

Yes. They have nothing to gain and everything to lose from anything fishy, with the study receiving the closest scrutiny from top scientists all over the world.

I think the lab aspects of the study are clearer because it was written up for publication in a scientific journal; if it had been for publication in a medical journal, the clinical and cohort aspects would have been emphasized.

 

[Andrew]

I have a copy of the Science article and I confirm that WPI-1125 is listed on the Figure 1 Group A. The thing is, this in combination with a statement on the website is not an indication of a problem with the study. The study makes no comments about tissue banks or lymphoma patient exclusion.

However, given the information you presented, there is a discrepancy between the slides and the website. I'd contact them about this, but I don't have copies of the slides to confirm what they say.

BTW, anyone who wants can see the full Science article is available for free from the WPI website. Go the the "news" page and click on "reprint".

"WPI-1125" is in the original Science publication, as well as in the Supplemental material. In the original Science paper, it is on page 5, group A, the 7th sample from the left. It is also mentioned in 2 places of Dr. Peterson's CFSAC slide-show. One of the slides contains all of the medical info about "WPI-1125".

If it can be hosted here or somewhere else, I'll gladly share it. It was available for the public at the CFSAC.

 

[Cort]

There was an interview in which Dr. Mikovits was quoted as saying 20 members of the cohort had lymphoma. The WPI later stated that the reporter got it wrong - that no members of the cohort had lymphoma. Perhaps the reporter got confused with the lymphoma cluster found in Incline Village.

 

[perovyscus]

The powerpoint presentation can be accommodated at http://drop.io

 

[Eric Johnson from I&I]

You can simply see WPI-1125 on the videos that are already available. Its near the end of Peterson's talk (but in the uninterrupted part, before he took any questions).

You need to look for the chronological info about the guy, not the number 1125, which is very faint and hard to see due to some idiosyncrasy in the slides.

 

[Eric Johnson from I&I]

Nice. I donno how to do that.

If anyone wants to hear everything he says, its starts around 8:30 here:
http://cfsknowledgecenter.ning.com/video/cfsac-dan-peterson-xmrv-1

It does sound like the frozen, old blood they revived XMRV from was 1125's. However, that doesnt prove that he wasnt also re-sampled again later by WPI.

 

[Eric Johnson from I&I]

Most likely, the guy continued to live in Incline or elsewhere in the Reno region, which means it would be easy for him to get to WPI or vice versa in 2006-8

 

[Andrew]

I don't think anyone has established that WPI-1125 lived in Reno. So this could be a patient from outside of the Incline group.

 

[Eric Johnson from I&I]

Fair point, yet Peterson said 1125 was in his mind an "index case" and that he got sick in 84. Peterson was in Incline then dealing with the epidemic. Maybe someone who got CFS elsewhere that year came to see him, but I would imagine that he mostly saw Incline/Tahoe people during that time. I forget how many went down in that epidemic but I think it was kind of a lot.

Further, "index case" per wikipedia is:

The index case or primary case is the initial patient in the population of an epidemiological investigation.

 

[Andrew]

I emailed wpi and asked about the questions here.

 

[Andrew]

After speaking with WPI I see no conflict. The study blood for Patient 1125 was drawn after the Peterson tissue archive was established.

The portion of Peterson's presentation that is being questioned was unrelated to the Science study. He was giving extra information from other projects. Patient 1125 was used as an example of how devastating CFS can be, and was selected for this slide outside of the context of the study.

As for the web site, I think this is just a poorly worded statement. The samples were randomly selected.

 

[ABarker]

Let's assume that "WPI-1125" was sampled between 2006-2008. Let's also assume what WPI says is true, and that:

"Patient 1125 was used as an example of how devastating CFS can be, and was selected for this slide outside of the context of the study."

Supposing these two statements are true, the WPI is still disseminating info that is contradictory. WPI claims that no patients in the original 101 cohort had lymphoma.

http://www.wpinstitute.org/research/research_biobank.html

However "WPI-1125" is in fact part of the original 101 patient cohort and the original Science publication; it is on page 5, diagram A, the 7th from the left. AND "WPI-1125" did in fact have lymphoma, something that Peterson knew as early as 2000, and the patient should never have been part of the patient sample. So the WPI is giving conflicting data here, ASSUMING everything else in the XMRV study is kosher, AND that WPI is being forthcoming...

Call me a conspiracy theorist, but a study of this magnitude should not be published this "sloppy", if that is in fact all that is wrong with it. However, just because WPI is now stating that "WPI-1125" was sampled between 2006-2008, doesn't make it true. Let's assume that the patient was actually part of Peterson's Bio Bank, and was not sampled between 2006-2008. There is just as much evidence that this is the case, as there is that it isn't. That is if you don't believe WPI's statement. Why wouldn't I believe WPI on this issue? Because they clearly made a HUGE mistake by allowing someone with lymphoma, who in fact died in 2008, to be part of the 101 patient cohort. If they included "WPI-1125", I'm not sure who else they included? As someone has pointed out, Mikovits apparently said that 20 of the 101 had lymphoma. I'm sorry, but there are too many red flags.

Like I said, call me a conspiracy theorist, but I think with a study of this magnitude, it is wise to be prudent. I would much rather have a "nobody" in the scientific community, like me, who pays attention to detail, catch this early on. Instead of have a "somebody" in the scientific community, catch this too far down the road, after everyone has jumped on the XMRV train, and have this all blow up in our collective faces. If a "somebody" scrutinized the study, and found problems (like what I've found), it could cause a huge set-back in the quest for answers to this disease.

Please note, I am not discounting the significance that XMRV might play in ME/CFS. I am just playing it safe, because like I said, there are too many red flags, and if a "somebody" comes along and pokes holes in the study, I guarantee it will set us back...

Note: I sent Peterson's slide-show to Cort; I believe he plans on posting it for everyone.

 

[Andrew]

Supposing these two statements are true, the WPI is still disseminating info that is contradictory. WPI claims that no patients in the original 101 cohort had lymphoma.

I agree that the web site does not reflect my understanding of the study.

However "WPI-1125" is in fact part of the original 101 patient cohort and the original Science publication; it is on page 5, diagram A, the 7th from the left. AND "WPI-1125" did in fact have lymphoma, something that Peterson knew as early as 2000, and the patient should never have been part of the patient sample. So the WPI is giving conflicting data here, ASSUMING everything else in the XMRV study is kosher, AND that WPI is being forthcoming...

I don't think a mistake on the web site invalidates the study.

Call me a conspiracy theorist, but a study of this magnitude should not be published this "sloppy",

Well, it should not. But so far there i is no internal inconstancy in the study, or between the slide and the study.

However, just because WPI is now stating that "WPI-1125" was sampled between 2006-2008, doesn't make it true.

Yes, anybody can tell a lie.

Let's assume that the patient was actually part of Peterson's Bio Bank, and was not sampled between 2006-2008. There is just as much evidence that this is the case, as there is that it isn't.

What the information says to me is the sample is from the 2006-2008 blood draws, and that WPI-1125 probably also had blood drawn as part of the Peterson Archive.

Because they clearly made a HUGE mistake by allowing someone with lymphoma, who in fact died in 2008, to be part of the 101 patient cohort.

I think it would have been a mistake to exclude people with lymphoma. Some people with CFS get lymphoma.

I think with a study of this magnitude, it is wise to be prudent. I would much rather have a "nobody" in the scientific community, like me, who pays attention to detail, catch this early on. Instead of have a "somebody" in the scientific community, catch this too far down the road, after everyone has jumped on the XMRV train, and have this all blow up in our collective faces. If a "somebody" scrutinized the study, and found problems (like what I've found), it could cause a huge set-back in the quest for answers to this disease.

I agree 100%. And I understand your point about red flags. I used to be in red-flag spotting job myself. And I felt it was worth asking WPI after you raised your concerns. The thing is, though, red flags don't always point to real problems. Sometimes it is just a mistake on an ancillary piece of material.

Please note, I am not discounting the significance that XMRV might play in ME/CFS. I am just playing it safe, because like I said, there are too many red flags, and if a "somebody" comes along and pokes holes in the study, I guarantee it will set us back...

Yes, it would be a disaster. But assuming you are correct, it is too late to take back the study. And if there is something to do, WPI knows about your concerns. But I think where this rests now is with all the replication studies.

Note: I sent Peterson's slide-show to Cort; I believe he plans on posting it for everyone

Cort might want to ask WPI for permission to post this. I don't know what the agreement was with NIH for making copies of the movie. I took down my screen capture because I was unsure. But anyone can see this on the movie.

 

[ABarker]

Andrew, thank you for such a well thought-out, reply. You make valid points, and even if I disagree, I see your logic, so I won't waste your time splitting hairs.

There is one concept that I'm not sure that you understand, or maybe I've conveyed it poorly (or probably if you had the 5 page paper slideshow to look at, it would make sense). Anyways, I'll try to explain it again.

You say that a mistake on the website does not invalidate the study. Just to be clear, do you believe the WPI has mistakenly posted that no samples from the original 101 patient cohort had lymphoma, when in reality "WPI-1125" did have lymphoma (therefore, the info on their website is wrong)?

Or do you think that none of the original 101 patient cohort had lymphoma, and that the mention of "WPI-1125" having lymphoma is in reference to something after the original Science publication (the Online Supplemental, Peterson's slideshow, etc.)? The original Science publication made reference to "WPI-1125", so this was 1 of the 101 patient samples. Peterson's slideshow confirmed that "WPI-1125" had lymphoma from at least 2000.

I'm guessing your issue is with the first scenario, but I wasn't quite sure. If your issue is with the second scenario, I'll just wait until Cort posts the paper version of Peterson's slideshow, and maybe that will be easier to explain.

The only other point that I think is worth mentioning is the inclusion of a patient with lymphoma. I disagree for a couple reasons; I think the sample size is too small to be throwing "curve balls" in there; I think that with a study of this magnitude, extra care needs to be taken to NOT draw extra scrutiny from the scientific community, which the inclusion of a lymphoma patient does, in my opinion (at least this early on)... I don't question Peterson's good motive or logic for wanting to study "WPI-1125", but it could have easily been left out of the original cohort, and studied independently, or as another cohort.

Also, I sent Cort a scanned copy of the paper slideshow that was available to the public at Peterson's CFSAC presentation. It is only the slideshow of what Peterson presented, and does not contain video.

Thanks again for your detailed, succinct points.