The Fight is on...Imperial College XMRV Study

[garcia]

Hi Holmsey. That's interesting. Where did you get this information?

Great question fresh_eyes! If this information is coming from Simon Wessely it would be great if we could be told in the interests of full disclosure.

 

[Eric Johnson from I&I]

Holmesy your backround narrative interests me.

But if they was really a good hearted bunch of excited retrovirologists. Why did they not try any serology, any anything that would deal with possible sequence differences in England that could thwart PCR? Thier attempt strikes me as pretty thin beer. And if they just wanted to do what they did, why not discuss possible sequence differences, and avoid definitive statements such as they have made.

 

[Dr. Yes]

On the "Science Now" Article by Sam Kean

Thanks for posting the Sam Kean article, fds66. I have to say I've been disappointed before by Kean's standard of reporting and this article is no exception. He doesn't present the issue all that objectively or intelligently (as one should in a journal called "Science"!); he makes no mention of the criticisms or reservations that he could easily have found about the Imperial College study, and instead puts it on equal, if not superior footing with the WPI paper. It is odd that he did not mention the difference in scope and rigor of review between the two papers (esp. since one was published in his own magazine, and the other was fast-tracked to the public). Note, too, the level of distortion he brings in the following passage:

Other scientists were dubious about the XMRV connection. They criticized the Americans for not explaining enough about the demographics of their patients and the procedures to control for contamination. Several virologists around the world practically sprinted to their labs to redo the experiments, and the discovery that a clinic associated with the Science paper was selling a $650 diagnostic test for XMRV made the issue more pressing. A British team already exploring the XMRV-prostate cancer link won the race, submitting a paper to debunk the claim on 1 December.

What is he referring to in the first two sentences? Some scientists said they were unsure, as one should always be, but the only ones who made public dismissals were Reeves and, I believe, Peter White, neither offering any justification. The issue of "not explaining enough about the demographics of their patients" has been flogged to death; the fact that remains is that we know far LESS about the cohort demographics, not to mention selection process, of the majority of published ME/CFS research studies -- the current Imperial College study being a spectacular example. Why didn't Kean mention that? Similarly, the contamination questions regarding the WPI studies have been explored extensively (including to some degree in the IC paper itself, though it then turned around and seemed to imply the opposite).

The following sentences, in their context, are even worse distortions of fact. Kean makes it seem to the reader that virologists "sprinted" to "debunk" the WPI study, based on their apparent 'doubts' about it. We know, of course, that the opposite is true; they were excited by the findings, which could potentially open a whole new field in virology and retrovirology... And they sprinted to the WPI/ Cleveland Clinic/ NCI to confer. Eminent retrovirologists like Dr. Coffin were very impressed with the quality of the study. The statement by Kean that they were 'pressed' to replicate partly by the VIP's commercial testing is absurd. And the statement that the IC team "won the race, submitting a paper to debunk the claim" is a distortion in two ways: first, they were off the radar, not a true replication study, and thus not a part of the real 'race', and second, they did not 'debunk' the claim, but merely could not find XMRV in an as-yet unclearly defined cohort using different methodology.

It seems Kean is on the same page with the outlandish UK press releases, but not with reality. He even borrows the IC team lingo without making clear it is an attribution when he says of the patients they selected: "Most were markedly unwell." Not making it clear that 'markedly unwell' are not his words but are straight from the paper is yet another example of the sloppy, 'mouthpiece' journalism in this article.

Given the distortions and tilt in the preceding part of the article, I am myself 'dubious' about the reliability of anything else in it. I would really like to know if the following statement is true about Coffin:

But some scientists, including Coffin and McClure, fear that Lombardi's clinic took advantage of that hunger by offering the $650 diagnostic test, 300 of which have been administered so far.

I'm quite sure Coffin has misgivings about the VIP commercial test (at the CFSAC meeting he voiced strong concerns about commercial testing at this stage), but did he really voice them - as well as the suspicion that Lombardi was "taking advantage" of patients - on the record?

I would assume that there is truth to his statement that the two groups have decided to cooperate to some degree. I actually think that such cooperation favors the Imperial College point of view, at least until they set the record straight on the exclusionary criteria they used for cohort selection. I would actually discourage the WPI from even touching any of the IC samples - at least until that matter is cleared up. There are enough high quality replication studies planned or already underway, including in the UK, which will use reliable selection criteria... I'd wait for those rather than risk testing a batch of Wessely's finest.

By the way - he also forgets to mention the possiblity (along with those discussed by Coffin) that the IC group found nothing because their testing was flawed (or their cohort flawed, as I mentioned before)... if he's mentioning the possibility of contamination completely hijacking the WPI study, he should mention these as well.

"We take no pleasure in finding colleagues wrong or dashing the hopes of patients, but it's imperative the truth gets out."

An unusually defensive statement by a research scientist, and I wonder what she meant by "truth" in its original context. I hope she was not implying, as she did in her other press statements, that she already knows what the "truth" is.

 

[Dx Revision Watch]

@ MEAgenda: ...thank you so much for pointing out that Dr Escobar, director of the New Jersey university that is slated to be home to the new NEI Center of Excellence, is a psychiatrist with a Wessely-ite view of CFS. Definitely cause for concern.

Hi fresh_eyes,

Given that Escobar is Principal Investigator and Director of the MUPS Research Center in Primary Care within the University of Medicine and Dentistry of New JerseyRobert Wood Johnson Medical School, and Associate Dean for Global Health and Professor of Psychiatry and Family Medicine at the UMNJ RWJ Medical School, any proposal to set up a new "NEI Center of Excellence" in New Jersey certainly bears close scrutiny.

It's quite clear from that Special Report what his views are.

I haven't read the paper but he was a co-author of:

Role of psychiatric comorbidity in chronic Lyme disease. Hassett AL, Radvanski DC, Buyske S, Savage SV, Gara M, Escobar JI, Sigal LH. Arthritis Rheum. 2008 Dec 15;59(12):1742-9. PMID: 19035409 [PubMed - indexed for MEDLINE]

There is a PowerPoint presentation here (in PDF format) which contains a number of slides around "MUS":

Mental Health Research in the Primary Care Setting: Challenges and Opportunities for Young Clinical Researchers: Javier I Escobar MD, Professor and Chairman, Department of Psychiatry, Robert Wood Johnson Medical School [367 KB] http://hsc.unm.edu/som/fcm/mep/documents/Mental_Health_In_Primary_Care_Setting_Javier_Escobar.pdf

Note the last entry of Slide 10:

Fashionable Disorders (Shorter E, From Paralysis to Fatigue, 1992

Yesterday ---

Ennui, Spleen,
English Malady,
Neurasthenia

law of thermodynamics,
reflex theory

motor symptoms = fits
paralysis, blindness, etc.

sensory symptoms =
bolus hystericus,
anesthesia, fainting, etc.

Today ---

Fibrosytis, Fibromyalgia,
CFS, Allergies, Multiple
Chemical Sensitivities

molecular genetics,
immunology

symptoms related to the
immune system, toxins,
viruses, etc.

highly passionate and
politicized groups

 

[valia]

1] How long has Dr Charles Shepherd been aware of the McClure/Wessely study that has been carried out at Imperial College London and which was published, yesterday?

I was told about it sometime during December. The name mentioned in connection with this study was Jonathan Webber (imperial College) and I did not know of the involvement with Wessely. I heard Webber's name from one of the virology people I have been talking to about XMRV.



Suzy

Hi Suzy and heartfelt thanks for the fantastic job you do.


Are you going to ask Charles Shepherd why he kept this study quiet, he is after all in the business of keeping us informed?

 

[Orla]

Esther 12

Maybe it's a bluff from the WPI to get a few more months of selling expensive tests before they take the money and run? This is exciting stuff.

I don't find this argument compelling. It is not the WPI that is running the paid-for tests on patients but Lombardi's commercial lab. The test seems to be very labour intensive hence the cost, though for a lot of people it is too expensive at the moment, or they would rather wait for further research.

But I don't think the WPI are getting any money from the testing. Even if they were it is probably small by comparison to the cost of the research, and more importantly, it should be remembered that the WPI is a not-for-profit institute that is there to help us. Any money they get goes back into their work.

If the WPI really didn't think XMRV might have significance (whether rightly or wrongly) they would not be defending their study so publicly or they would likely not be criticising the UK study in the way that they did. It could still turn out that XMRV is "only" a passenger virus, or that it only explains some cases of ME/CFS, but we will have to wait and see.

Orla

 

[Dr. Yes]

@ME Agenda aka Suzy... Great work, Suzy! You are a true information Ninja.

Forgive me if this has already been pointed out.
I just wanted to ask anyone's opinion of the following (quote from the Imperial College/King's College research paper publihed by PLOS ONE)

"All patients had undergone medical screening to exclude detectable organic illness, including a minimum of physical examination, urinalysis, full blood count, urea and electrolytes, thyroid function tests, liver function tests, 9 a.m. cortisol and ESR".

If all the patients chosen for the study had normal results on all these tests, wouldn't that exclude just about every member of this forum?

Also, the report says that Simon Wessely was the only participant in the study responsible for hand picking the participants based on an interview.
"Responsible for providing samples and associated data from a well characterised and valuable cohort of subjects: SW."

I wonder if the result was more a matter of participant selection than variations in the science???

This point was brought up earlier in this thread (don't ask me where... starting right after we first read the paper...). I agree that this is an absolutely pivotal point for clarification from Wessely et al... The paper was very unclear in this matter. It is further complicated by the fact that they were strangely inconsistent and ultimately vague about the supposed "CDC criteria" they used... By the end of the paper it is unclear whether they used Fukuda only for its psychiatric exclusionary criteria or for all physical selection criteria as well. Was an extra "layer" of physical exclusion placed on the selection process, as the passage you quoted seems to suggest? Were EBV positive (or anything-else-positive) patients removed from the study? And, as ME Agenda asked, were samples taken exclusively from patients who were examined recently or were they stored samples from patients who had been examined by Wessely in the past (perhaps many years ago)?

I wrote to Jennie Spotila regarding these and related concerns and asked if they could be conveyed to Dr. Vernon and the board as questions to publically pose to the IC team (and Wessely in particular), and to voice in a second press release. Jennie said she will pass them on appropriately (thanks, Jennie!). I'm not sure what the best strategy is for getting to the bottom of this issue, but somehow forcing a comprehensive clarification on the public record from Wessely et al is the best I can think of.

Does anyone think we should ask them separately, as well? Especially given that any CAA response will take some time, if they address this vital issue at all?

If so, should we (at this forum) do it jointly?

 

[Parismountain]

Hi Sparklehorse,

I am not at the end of this thread yet so someone else might have mentioned this to you. Please keep in mind that the researchers in the XMRV study admitted that they used blood from the sickest of the sick. I believe this is common practice in projects of this type. The current public testing by VIP is using blood from people who are paying to see if they have the retrovirus in their systems. Because the definition of what CFS seems to depend on what country you live in, what the latest beliefs of the CDC are, your personal doc, etc. etc. it is tough to know whether one has CFS or not. We can only hope that the current research focus will continue to try to find some answers for us.

Good Luck,

Maxine

Maxine, Every once in a while I see on a thread the angle about using sickest of the sickest. I think that that label is becoming pretty meaningless and we're relying on it too much. I saw the Dr. Oz xmrv show and the lady they had on there tested postiive and somewhere on Kort's site here is a discussion of how "sick" or "well" she looked. I asked my Doc about that label, "sickest of the sick" Dr. L app and his answer to me was they most likely are going by the activity scale type of bucketing like we see in our report your sample result area of this site. I wondered if I should be tested, I'm fully disabled but ambulatory and wondered if I'd have been excluded from WPI's cohort and he didn't think I would have been. I mention this because I watched closely the lady on Dr. Oz and I resemble very well her activity ability which was not bedbound and yet she was in the study which found her postiive. I'm not being critical here, just sensitive to the use of relying on sickest of the sickest for any input to our analysis since by that one lady's example she wasn't what I'd deem as sickest of the sickest. I saw in the CFS meeting which Wanda Jones presided over, the comment section, some submitted videos where others had to speak for them they couldn't muster the 5 minutes of energy. Now to me that would be sickest of the sickest if they only used those patients. They clearly didn't do that which to me gives us affected but able to eek out some existence some hope that just maybe XMRV is an input as to how we are sick too.

Ken

 

[Advocate]

Interesting exchange here between one of the authors (Mcclure) and a knowledgable reviewer:

http://www.plosone.org/annotation/l...notation/6bfbac4a-5ace-4a2d-a9bb-60f017ae24d8

Hi Garcia,

Yes, I was glad to see a knowledgeable reviewer's comments on the study. The reviewer is Dr. A. Dusty Miller, who is at the virology/gene therapy lab in the Division of Human Biology at the Fred Hutchinson Cancer Research Center in Seattle, WA.

 

[starryeyes]

From the ScienceNOW Article: A British team already exploring the XMRV-prostate cancer link won the race, submitting a paper to debunk the claim on 1 December.

Oh so the Psych Brigade are saying they "won the race". No wonder they had to get published so quickly.

According to Dr. Coffin, those who have XMRV will have “XMRV-related CFS”. And we already know that some people with CFS do have it. I don't know why he didn't state that. It doesn't look like those with XMRV are going to be shaking off the name “CFS” unfortunately.

 

[Hysterical Woman]

Hi Ken

Maxine, Every once in a while I see on a thread the angle about using sickest of the sickest. I think that that label is becoming pretty meaningless and we're relying on it too much. I saw the Dr. Oz xmrv show and the lady they had on there tested postiive and somewhere on Kort's site here is a discussion of how "sick" or "well" she looked. I asked my Doc about that label, "sickest of the sick" Dr. L app and his answer to me was they most likely are going by the activity scale type of bucketing like we see in our report your sample result area of this site. I wondered if I should be tested, I'm fully disabled but ambulatory and wondered if I'd have been excluded from WPI's cohort and he didn't think I would have been. I mention this because I watched closely the lady on Dr. Oz and I resemble very well her activity ability which was not bedbound and yet she was in the study which found her postiive. I'm not being critical here, just sensitive to the use of relying on sickest of the sickest for any input to our analysis since by that one lady's example she wasn't what I'd deem as sickest of the sickest. I saw in the CFS meeting which Wanda Jones presided over, the comment section, some submitted videos where others had to speak for them they couldn't muster the 5 minutes of energy. Now to me that would be sickest of the sickest if they only used those patients. They clearly didn't do that which to me gives us affected but able to eek out some existence some hope that just maybe XMRV is an input as to how we are sick too.

Ken

Hi Ken,

I understand your concerns and I believe I share them. I am not sure exactly what criteria the WPI study used to determine that they used the sickest of the sick. That information might have been posted in the wealth of information that has come thru these forums in the last few months. Can anybody help us out here - were those criteria posted?

CFS detractors can use subjective functionality questionnaires against us saying that we aren't really as ill as we make out to be or actually "want to be". And others can get into discussions about "I am sicker than you". It's a sad state of affairs really that hopefully will be alleviated when more information comes forth about CFS.

Let's hope that eventually we will be able to use better statements than "sickest of the sick".

Take care,

Maxine

 

[Dx Revision Watch]

... Are you going to ask Charles Shepherd why he kept this study quiet, he is after all in the business of keeping us informed?

Thank you for your kind words, valia.

Yes, I shall be asking. I would have wanted to have established, had I been Dr Shepherd, who the collaborators were, which institutions are involved, who were the funders and which institutions were providing the cohort/samples.

BTW, the FOI I had in before Christmas for the UCL PhD project provided very little information as this is held by the funders, the MRC. So my queries will need to be redirected to the MRC.

 

[Sparklehorse]

Hi,

I think people who make comments such as Esther 12's

"Maybe it's a bluff from the WPI to get a few more months of selling expensive tests before they take the money and run? This is exciting stuff. "

need to be very careful with their comments legally speaking, because to my eyes this apears to be defamatory at best. The implications of such a statement are extremely serious and should not be made unless you have any proof of your insinuations. Such insinuations could do major damage and are very proabably completely false and without foundation. That's not fair. You could also find your self the subject of legal action against yourself. Personally I'm still unsure about a lot of things but statements like the above help nobody.

Thanks.

 

[garcia]

Hi Garcia,

Yes, I was glad to see a knowledgeable reviewer's comments on the study. The reviewer is Dr. A. Dusty Miller, who is at the virology/gene therapy lab in the Division of Human Biology at the Fred Hutchinson Cancer Research Center in Seattle, WA.

Thanks for that Advocate! I was wondering who Dusty Miller was. Looked like someone in the know.

 

[valia]

Thanks Suzy, I would like to say more, but 7/8 brain dead today (instead of the usual 6/8)

 

[Esther12]

Hi,

I think people who make comments such as Esther 12's

"Maybe it's a bluff from the WPI to get a few more months of selling expensive tests before they take the money and run? This is exciting stuff. "

need to be very careful with their comments legally speaking, because to my eyes this apears to be defamatory at best. The implications of such a statement are extremely serious and should not be made unless you have any proof of your insinuations. Such insinuations could do major damage and are very proabably completely false and without foundation. That's not fair. You could also find your self the subject of legal action against yourself. Personally I'm still unsure about a lot of things but statements like the above help nobody.

Thanks.

Did you read the whole comment it was from? I don't see how anyone could have a problem with it.

 

[Quilp]

Did you read the whole comment it was from? I don't see how anyone could have a problem with it.

I have a problem with it Esther12. You are leaving yourself open to ridicule, and more seriously, legal action. I have given money to WPI, and they rely on donations like mine to further their research.
Please think more carefully before you make the comments you make.

 

[Esther12]

I have a problem with it Esther12. You are leaving yourself open to ridicule, and more seriously, legal action. I have given money to WPI, and they rely on donations like mine to further their research.
Please think more carefully before you make the comments you make.

If you want to ridicule me, go ahead and try. I'd appreciate it if you quoted my whole comment though, as out of context it could be misinterpreted.

 

[Martlet]

Drat - you realised I was cunningly try to slip in an unsolicited insult to Sophia Mirza. Anyway, you're not allowed to condemn my comments now - Bwah-ha-ha!

Esther,

Please end the snarky comments.

I was torn between deleting that part of your post and allowing it to stand. I chose the latter, since others have responded but any more such comments and I will have to start editing your posts.

 

[Knackered]

I have a problem with it Esther12.

I do too, it wasn't necessary.