AABB "actively discourages" CFS blood donation in USA!!!

[V99]

I believe you may need a flux capacitor.

 

[VillageLife]

I believe you may need a flux capacitor.

Back to the future!

 

[leaves]

Aaah I wish we could see in the future. That would certainly be good for my nerves. The reason that we get so angry at all those negative studies is that we are afraid that it somehow will not work out.
However I think that if XMRV is indeed a major player (and I think it is) that truth will prevail. We just have to let science run its cource. This is how science works, not as fast and efficient as we would like it, but we will get there. XMRV now receives so much attention from so many in the research community, its too big to be swept under the rug.

 

[Cort]

The old blood was from patients selected with the Oxford criteria. Persons with findings you mention, would been excluded.

That was the Kuppeveld study and Dr. Mikovits reported that 2/7 of the samples were positive for XMRV at the WPI. None of them would have been excluded because a) the Oxford definition does not preclude any abnormal findings - as is so often reported - and b) 20 years ago none of those tests were even available, so they couldn't have tested for them and t herefore couldn't known if they were positive or negative. In any case we know that the WPI could find positive samples even in that strange - as parvofighter so vividly pointed out in her paper - group. That's one reason I don't think this is a cohort problem; I think this is a technique problem.

 

[Cort]

Cort wrote: Another was from a prominent CFS researcher currently studying the role of endogenous retroviruses play in CFS (Huber). Another was from a Canadian virologist who has apparently been a passionate advocate for CFS for many years (Joliceur).

I have heard rumours about these studies but have not seen data.

The results of both studies were reported at conferences.

 

[V99]

Wessely and his gang, say it is Fukuda that excludes physical signs.

The 101 patients studied in (1) were "patients fulfilling the 1994 CDC Fukuda criteria for chronic fatigue syndrome and the 2003 Canadian Consensus Criteria for chronic fatigue syndrome/myalgic encephalitis (CFS/ME) and presenting with severe disability" [supporting online material for (1)], but the latter requires physical signs precluded in the former.

http://www.sciencemag.org/cgi/content/full/328/5980/825-b

 

[lansbergen]

That was the Kuppeveld study and Dr. Mikovits reported that 2/7 of the samples were positive for XMRV at the WPI. None of them would have been excluded because a) the Oxford definition does not preclude any abnormal findings - as is so often reported - and b) 20 years ago none of those tests were even available, so they couldn't have tested for them and t herefore couldn't known if they were positive or negative.

Nijmegen said they exclude everyone who has anything known to cause fatique and/or show symptoms of an infection.

I wonder why you give a list of findings for which no test were available back then.

Rnase-L was indeed published later.

Mikovits reported it but Nijmegen did not. I am not sure the positive samples were from the 1992 cohort.

 

[Cort]

Cort, if my memory serves me, I think the reason Mikovits has responded to those studies so publicly was because of McClure's (? I think that's the right name) public comments about contamination of WPI. This was in a newspaper after the first UK study was published. This was a public attack on the credibility of WPI and could possibly stop future researchers from looking into XMRV in CFS.

So Mikovits then needed to respond to set the record straight in the same manner the accusation was made.

Now, the third study also needed some response because of inaccurate information put in the news media based on the second study. Mikovits needed to let it be know this other lab chose not to mention that WPI found some positives in their samples. That was unethical and since that study, again, could influence public policy and funding for XMRV in CFS, the record needed to be set straight, publicly, since the study and media comments afterward were made publicly. Actually, though, the response was made by Anne Whittemore to McClure in a letter, which was put out publicly.


But all of this was in response to Mikovits' initial comments made after the Science journal publication to the effect that this should solve the whole psychological debate in UK. (I think Anne might have said something to the same effect.) This, though, was not a criticism of other retrovirus researchers. It was a public exposure of Wessley.

So it seems the public barbs increased gradually, with multiple parties involved.

This may sound childish, but between retrovirus researchers, McClure started it. LOL

I don't know how I feel about Mikovits' comment against the psychologizers. She was, no doubt, trying to stand up for a group who have been mistreated, in her view. If Wessley responded publicly, I could say the back and forth was not good and Mikovits started.

But as far as between retrovirus researchers, it was the first comment of contamination that was out of line. And it is entirely appropriate for Mikovits to set the record straight for the public since the accusation was made in public.

Tina

I don't have a problem with anything Annette has done, and I agree that it does take two to tango, and I agree that they have not been treated well. I absolutely agree with that. I can see how they would be upset but I think they need to be very careful about what they do and say.

Mayo, the Cleveland Clinic, Wistar.... have all been 'defined' in the research world; everybody has an idea of what these institutions stand for. The WPI, a newcomer, had not been defined....now that they're in one of the biggest research findings in years they are getting defined in the research community - who they are, what they stand for - the type of Institute they are - that's getting defined on the big stage - I guess you could say they're getting branded. I think you can do very good science -as they obviously did with the Science paper - and still get hurt on the other end; the political end.

The studies - I kept waiting for other professionals to say the virologists in the other studies were incompetent and I haven't heard anyone else say that. Dr. Komaroff just gave a talk where he, ended up endorsing the XMRV finding and stating that the retrovirologists involved in the other studies(forget about Wessely and those others) were excellent researchers. Dr. Klimas, a big advocate, has not jumped on those for virologists. Neither have the big UK ME associations. I conclude that those virologists do know how to do PCR and that the mechanics of the studies were done correctly and that the reason they didn't find it was because they used the wrong techniques.

Dr. Klimas said to be prepared for some negative studies. She said she sent out samples to four labs, each of which said they could find XMRV, and each of which produced different results! apparently, what we should have expected was a series of studies trying all sorts of different techniques to find the virus, some of which could not. The first studies studies use the easiest, quickest techniques and the later studies use more comprehensive techniques. I assume that the earliest studies were flawed in the way all early studies are flawed - they took the thinnest slice at the problem.

There is alot to look forward to. Dr. Mikovits is overseeing the DHHS study and we have lots of friendly, really good researchers looking for it. Just look at the CAA study; it will apparently use the same techniques as the WPI study and they're working with Glaxo Smith Kline, the big drug company that has all its anti-retro viral products on shelves. They would just LOVE to find this virus. What a moneymaker their product would be. Can you imagine - they'd kill to find this virus and they will try hard to find it. They are exactly the ones we want to try and find this virus; they have a huge money incentive to find it and they have lots of money to spend to look for it.

Dr. Bateman/Light, Dr. Montoya, Dr. Stein, the National Cancer Institute...are also looking for it. The only thing to worry about XMRV is if its not there. If its there it will be found. I assume that it is, given the WPI's excellent work, and that it will all work out in the long run.

 

[lansbergen]

The results of both studies were reported at conferences.

Attended by you I guess but not available for me as far as I know.

 

[Cort]

Wessely and his gang, say it is Fukuda that excludes physical signs.



http://www.sciencemag.org/cgi/content/full/328/5980/825-b

That's a good point. I'm not sure what they're referring to. I wonder which physical signs they're referring to. They do preclude things like severe obesity, I think. They would not allow pregnant women, I don't think, to participate in studies. The Fukuda criteria is a research definition not a clinical definition - it sets out the type of people that should be allowed to participate in studies. If you had untreated thyroid disease you'd couldn't participate in a research study...if you had 'treated' thyroid disease you could. If you were grossly obese you could not participate or if you were pregnant because that could throw the results off.

 

[Cort]

Attended by you I guess but not available for me as far as I know.

Look in the conference proceedings or google the names and you'll see where the reports came from.

 

[Cort]

Nijmegen said they exclude everyone who has anything known to cause fatique and/or show symptoms of an infection.

I wonder why you give a list of findings for which no test were available back then.

Rnase-L was indeed published later.

Mikovits reported it but Nijmegen did not. I am not sure the positive samples were from the 1992 cohort.

They were all from the samples Kuppeveld gave her. I assume they were the same samples he tested.

 

[Cort]

Cort, which studies did this? I heard by indirect reports from one of the conferences that Huber had tested a WPI positive sample, but apart from this I was not aware that any studies had used WPI reagents, or samples? Can you point us to where this information is posted?

According to reports Huber had 19 samples from the WPI and was able to use her techniques to find XMRV in 17 of them. She was unable, for whatever reason, to find XMRV in any of her samples. WPI sent reagants and samples to Dr. Kuppeveld as well. I assume that he was able to find XMRV in the positive WPI samples using his techniques but was unable to find them in his patients. I imagine he used different reagants in his study.

I believe the Groom/Kerr study must have had samples or reagants as well because the WPI reacted so negatively (and understandably so) to not being told about the study results until just before they appeared.

http://www.wpinstitute.org/news/docs/DearDrMcClureaw4.pdf

 

[V99]

I wonder which physical signs they're referring to.

On the CDC website, under Diagnosis of CFS, there is the following "There are no physical signs that identify CFS". http://www.cdc.gov/cfs/cfsbasicfacts.htm

I think this is sloppy by the CDC, as clearly there are. They do say 'identify', so I guess Wessely misread it.

 

[Cort]

Nijmegen said they exclude everyone who has anything known to cause fatique and/or show symptoms of an infection.

I wonder why you give a list of findings for which no test were available back then.

Rnase-L was indeed published later.

I provided that list because parvofighter implied that unless you were diagnosed using the CC definition that you might not find XMRV. I just wanted to point out that we've had lots of results with patients diagnosed under the Fukuda definition. In fact all of our results are from patients with the Fukuda definition - as not very good as it is! I hope the research community creates a research definition based on the CCC - I think that would be a big step forward. For now, if you can find all those other things in CFS using that definition you should also, I think, be able to find XMRV; that's all I'm saying.

 

[Cort]

On the CDC website, under Diagnosis of CFS, there is the following "There are no physical signs that identify CFS". http://www.cdc.gov/cfs/cfsbasicfacts.htm

I think this is sloppy by the CDC, as clearly there are. They do say 'identify', so I guess Wessely misread it.

I don't know but I imagine that that refers to looking at a person and seeing signs of a disorder. If you have jaundice a physical sign would be yellowing of the skin. Or if you were having heart failure you'd be sweating and clammy. If you broke your arm or had rheumatoid arthritis there would be swelling....maybe there are physical signs of CFS...the Rhomberg test comes to mind but I don't know if that is a test result or a sign. There appear to be symptoms and signs....

 

[V99]

I guess a sign is something you see. The Canadian criteria lists a few of those.

 

[Cort]

I guess a sign is something you see. The Canadian criteria lists a few of those.

That must be the difference then. The CCD is far superior to Fukuda in my opinion and the CDC has been nothing but a problem with regards defining CFS. I believe Dr. Jason is attempting to quantify the CCD - hopefully turn it into a research definition - that would be a big step forward

 

[V99]

Same here Villagelife, no test for POTS, not MRI, pretty basic.

 

[usedtobeperkytina]

Cort, you make a good point, WPI is now being defined as credible or not. Their behavior is contributing, one way or another. But if they didn't speak out against contamination complaints, then that would also determine their credibility.

And this credibility was not just in medical research community, but in world in general since the claim of contamination has not just been whispers, but it was made in a news article. So would the University of Nevada, NIH or other institutions withdraw funding from a lab that makes large claims based on a contaminated study? The record needed to be set straight in the public arena.

And since it hasn't stop (see Dutch study and public comments from that side of the Atlantic after that) then it needed to be made clear, publicly, again.

Now, do i see some PR mistakes from WPI? Yes:

First of all, before October Science Journal publication, I see no PR mistakes for years. They played it right up to publication, despite the clear significant finding they knew about for possibly a year earlier. They got some big names as partners and they satisfied every demand from the reviewers, all the while keeping their mouths shut. Not to mention, they started the study off good in the beginning, picking patients and controls so that Science Journal reviewers saw the figures as telling a true story.

But, right afterward, Mikovits revealed information of Autism and Fibromyalgia small sample results in a Nevada interview show. She also mentioned vaccines. That was a mistake on two levels. One, she should not have released unpublished information in lay media. It is small group, relatives of CFS patients (which wasn't mentioned in the T.V. program, I don't think) and had no controls. She later said she recognized it was a mistake to mention these results as she did.

Secondly, unless you have strong data and the same kind of confirmation from other labs (as in Science journal study) stay away from any public statements about autism and vaccines. At the most, mention it in a conference as a hypothesis, but certainly don't say anything on T.V. That is just too much of a political hot potato to put out until you have solid data.

Thirdly, someone, I don't remember whom. I think it was Mikovits, attributed ulterior motives for one of the failed studies, I think the first one. While she needed to publicly correct the contamination claim, insinuating ulterior motives for McClure was out of line, if I am remembering right that she did that. Stick to the issue of the methods and cohorts of the studies. Now, I'm not saying there wasn't ulterior motives on the part of Wessley and his influence over the study is more than just giving samples. (Even if his patient cohort was wrong, some XMRV should have been found in those numbers, healthy or patients, if done correctly.) Maybe Mikovits has some knowledge showing it was rigged that we don't know. But you don't accuse a researcher of ulterior motives unless you have evidence to back it up. Which they do have such evidence to make a claim on the third study.

Now, another mistake, news media reports with inaccurate information about WPI or their studies, quoting these other researchers, must be corrected publicly and quickly. If anything, I think WPI has made the mistake of not addressing these quickly or loudly enough. I think the Whittemore letter came a little late. Within a day or two, these things need to be corrected strongly and publicly. No accusations, just the facts ma'am.

And I see no problem with Mikovits sounding the alarm, saying possibilities for other diseases, including autism, as long as she doesn't release unpublished research results. It's all just hypothesis. Exposing where federal research money is going and not going, in the face of a possible new pathogen, is a matter of public concern. The researcher into that pathogen is in the position to know the nature of that and its possible implications. So getting that information into the public is certainly appropriate.

But, I saw the trailer for the What About ME movie. And Mikovits makes a mistake. She says there are three human retroviruses that cause cancer and neuroimmune diseases: HIV, HTLV and now XMRV. So here it is, she publicly says XMRV causes disease. Too early for that. She might see it, but too early to make public statements that it does. Qualifiers such as "likely" "possible" etc. could have been used. That would have been better, at this time.


These are my opinions, and only my opinions.

Tina