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

Cort

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A. You don't need true replication studies to find a virus. The scientific community does not expect true replication studies in order to find a virus. There are all sorts of different types of PCR and all of them can find viruses.

So-called “failure studies” use one technique. Science uses 4.
So-called “failure studies” use blood that is as old as 20 yrs old.
None of the “failure studies” use Canadian AND Fukuda criteria. Including “friendly researchers” such as Jolicoeur and Kerr. Wanting to find the virus does not automatically connote “good science”.
The list goes on...
Nobody expects any one study to duplicate the Science. All they're trying to do is find the virus using PCR. One study used old blood but don't forget Parvo that the WPI found XMRV in the 2/7 s samples of that 20 year old blood! . I don't think anybody thinks that XMRV is not going to be found in Fukuda patients. That is the standard research criteria = look at this list of findings in studies with people diagnosed according to Fukuda and tell me that you're not going to find XMRV in them;

  • Active HHV6 Infection
  • Rnase L broken up
  • Natural killer cell dysfunction
  • Cytotoxic T cell dysfunction
  • low blood volume
  • Abnormal HRV
  • Abnormal brain protein signature

The list could go on and on. If you can find all those things in people diagnosed with the Fukuda criteria but you can't find XM RV then XMRV is not going to be a major player in this disease but I'm not worried about the cohorts. I don't think they have anything to do with it. The fact is that XMRV has not showed up at all outside of the WPI; it's obviously the methodology that's the problem

Believe me Parvo, I'm being very independent here. I know what the tone on the forums is. I read the laudatory comments on your piece but don't see any need for the CFIDS Association to do a review of the studies problems every time it mentions them. Its acting very objectively - perhaps to objectively for the patient community - but objectivity has its own rewards. In that very sentence they noted that the search for XM RV continues. Did you read that?

XMRV is not resolved and I don't think that you should worry about it not being resolved to your satisfaction. There are lots of studies going on - we just heard of two new studies from Canada and one from a top virologist at Stanford - who is collaborating with virologists at Columbia. The research community is devoting a lot of money and time to XMRV. We are going to get to the bottom of XMRV.....
 

lansbergen

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One study used old blood but don't forget Parvo that the WPI found XMRV in the 2/7 s samples of that 20 year old blood! . I don't think anybody thinks that XMRV is not going to be found in Fukuda patients. That is the standard research criteria = look at this list of findings in studies with people diagnosed according to Fukuda and tell me that you're not going to find XMRV in them;

  • Active HHV6 Infection
  • Rnase L broken up
  • Natural killer cell dysfunction
  • Cytotoxic T cell dysfunction
  • low blood volume
  • Abnormal HRV
  • Abnormal brain protein signature
The old blood was from patients selected with the Oxford criteria. Persons with findings you mention, would been excluded.
 

lansbergen

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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.
 
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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
 

Megan

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Several of the studies collaborated with the Whittemore Peterson Institute - they used their reagants and samples.
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?
 

Megan

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I agree with Tina. One of the reasons Mikovits has reacted, perhaps overreacted, so strongly is because of the persistent suggestion by most of these resrearchers that the WPI samples were contaminated. Judy has presented many powerful arguments to refute the contamination idea:
1) controls were not 'contaminated'
2) patients demonstrate anibody activity against the virus
3) the findings were repeated at two other labs
4) they sequenced the virus (same as, but slightly different to the prostate cancer strain - so hard to see that it was contaminated by that)
5) they have EM pictures of the virus
6) they subsequently utilised a CDC test against their samples designed to pick up mouse contamination and none was found
As far as I can see John Coffin is also not buying the contamination theory either. Yet in the face of this defence people keep repeating it without any evidence. I have heard this from a researcher here also. What we have heard publicly on contamination may only be the 'tip of the iceberg'. I don't think it is inaccurate to decribe this as a whispering campain against the WPI. No wonder Judy is wild.

I also agree that Mikovits could have played her cards a bit better at times, and some of the PR coming out of the WPI has been confusing. But it's easy for me to say that sitting here on the sidelines. I think with her it's partly the nature of the beast, she has a strong enthusiastic personality and says what she thinks. I keep reminding myself that if she had a more conservative personality she may not have turned up at a CFS conference in the first place! I am naturally conservative myself so I tend to think a more cautious approach would be better. But then I wonder about those guys who discovered the ulcer bacteria, maybe if they had been less conventional it would not have taken them so many decades to get noticed? And I don't have decades to waste.

As far as the validation studies go, I can see that these are important. But when there are inconsistent findings doesn't that make replication studies all that more crucial?
 

Mithriel

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Cort, my point was that there was no need to mention the failed studies. They are irrelevant to a precautionary blood ban. Mentioning them there just brought them to everyone's notice again and diluted any benefit with the public we might have gained from not being able to be blood donors.

Someone reading that we can't give blood might pause and think maybe we aren't just mentally ill or faking. But no, the CAA just had to remind them that there are studies that didn't find XMRV so they can go back to thinking the science paper was just a blip and we'll soon be reconfirmed as being neurotics.

It's like a newspaper not mentioning someone without adding that they were charged with murder but found not guilty. It doesn't leave the impression of innocence but adds to the weight of guilt.


On another point, my husband is a diagnostic virologist and he feels PCR is over rated. It works beautifully if you have the correct primers and actually have virus in your sample but that is the sticky part. You need to be using the right tissue and enough of it to make sure you have virus present. For some viruses they have been trying for years to develop a PCR test but they haven't managed it.

Laboratory tests were originally used to confirm a doctor's diagnosis but over the last few decades they have been given too much weight. In reality, a positive test often has to be confirmed by a different technique and a negative test does not carry much information. If symptoms persist it should be repeated but this is often not done.

There is a general ignorance about laboratory work. It is the same as with statistics, they are used but what they mean is not understood.

Mithriel
 

natasa778

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Why she just didn't duck her head and ride it out, I don't know. Doesn't she think that it's inevitable that once someone does a true replication study that the finding will be validated? If she has the evidence - and she appears to - why not keep quiet and wait for the right study to come along and prove it? Its like someone who has an Ace in her pocket but she's acting like she has a deuce.

I'm a bit stunned, to say the least, that you bring this up Cort.

It is bleeding obvious that each rubbish study makes it harder and harder to secure the funding and harder and harder to maintain positive pr face of xmrv research. Those studies were POOR quality and it is paramount that they are named and shamed for what they are. At this point in time.

btw CAA/Vernon should have done it, any advocacy group should have done it... I can only think of few reasons they didn't a) terribly misinformed b) stupid c) avoided the issue on purpose. If a) or b) they should get someone else in or dismantle altogether, if c) possibly a criminal case.
 

V99

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I'm going to repeat a few things other people have said, and add a bit.

The first study:
Plosone, Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome
Involved a respectable scientists & Wessely. Was not a sloppy study, used one method & no culture, and was not a replication study. They speculated this my be due to geographical distribution.

The second study:
Retrovirology, Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome
Involved respectable scientists. Was not a sloppy study, used one method & no culture, and was not a replication study. (DID NOT REALLY PROGRESS SCIENCE BEYOND 1ST STUDY)

The third study:
Prevalence of xenotropic murine leukaemia virus-related virus in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort.
Involved van Kuppeveld & van de Meer. Used one method, and was not a replication study. Omitted important data. Did not pass The Lancet's peer view process, and would have not met BMJ's.

The paper by Van Kuppeveld and colleagues is an unusual paper for the BMJ to publish. As our research highlights page explains, we would usually reject a small case-control study examining the prevalence of a virus in 20 year old blood samples. Instead we fast tracked it.
To accompany the third study was an editorial by McClure & Wessely. They made the following statements.
There has been much talk of different protocols being used in the four studies. These technical differences are irrelevant provided amplification is controlled by inclusion of a "housekeeping gene"—to show that a known human gene can be amplified under the conditions used—and the sensitivity of the assay is known, as was the case in all three European studies.
Although the patients were not well described in the original study, van Kuppeveld and colleagues provide the additional information reported at a conference last year that the patients in question came from an outbreak of chronic fatigue syndrome at Incline village on the northern border of Lake Tahoe in the mid-1980s.
It is possible that XMRV is implicated in the Lake Tahoe episode but does not play a substantial role in most cases of chronic fatigue syndrome elsewhere.
They also referred to the ongoing research as a 'saga', telling readers that the "news was received philosophically by most retrovirologists...". Really! How, "most researchers into chronic fatigue syndrome were also sceptical, mindful of the problems of defining the syndrome..." No mention that it may account for a subset of patients, because the Science paper had used Fukuda & Canadian criteria. They then claimed that, "But if the research community was underwhelmed, people with the syndrome were not." How would they know??? Instead of focusing on the current issue, they then managed to advertise Wessely's own little money spinner of CBT/GET, saying how it is, "a perspective that offers hope to patients and is backed by evidence."

Fiona Godlee, editor of the BMJ, also wrote an article, saying:
So yes, let’s have more research into chronic fatigue syndrome, but let’s make sure it’s good enough research.

Recently we have had Dr. Francis Ruscetti, NCI, saying that he is especially surprised about the fact that the investigators of the UMC St. Radboud at Nijmegen concealed in their publication that the Americans found traces of XMRV in the same blood samples from the Dutch patients. "I don’t know how they get away ethically with this," said Ruscetti. "I don’t think that is good science." He also made it clear that the WPI, the NCI and the Cleveland Clinic applied four procedures in their research. "In those negative studies they only tried one." And ventilated his annoyance over what he calls the "whispering campaign" about contamination. According to the Nijmegen researchers, the Americans contaminated or polluted the Dutch blood samples.

Also, Dr. John Coffin has said it is not clear that they are "true" replication studies.He also dispelled the criticism of some researchers that the blood samples in the Science-published study could have been contaminated, pointing to the authors' comment that the patients had an immune response to XMRV. "The presence of antibodies is an important confirmation that patients were infected and that contamination was not an issue,".

It seems that all three of the main complaints go back to van Kuppeveld and colleagues. The whisper campaign about contamination, rumours about the patient cohort used in Science, and concealed data. Therefore I cannot see how anyone can say that the researchers of the third study are not incompetent. As for McClure & Wessely, they failed to do their research and find out whether van Kuppeveld and colleagues were correct. Why didn't they ask? This should never have been published by the BMJ. Now McClure claims that she can find XMRV in prostate cancer patients (unpublished), but still, she found none in the controls used for the CFS study. She must be questioning her own abilities by now, or realising that it is a difficult retrovirus to find.

This all bring us back to the CAA. Yes Dr. Vernon (and Dr. Mikovits) are on the DHHS task force, but this is no reason not to advocate on behalf of patients, and clearly state they were not replication studies. Coffin can do it, and he also counters the contamination issue. Ruscetti also, he makes it clear that they only used one method and speaks out about Nijmegen's unethical behaviour. I think this all comes down to a conflict of interest. It just isn't good enough.
 

V99

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I would also add, that realising that they could not find XMRV with their method, they should have gone back and used the methods from the Science paper, before publishing.
 

VillageLife

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Dr Ruscetti (who is joint discoverer of HTLV 1) has said "I don't know how they think there going to get away with it!"

And they won't get away with it, because the truth is the truth but there aren't any time machines to take us to the future, so we've gotta be brave and sit this out, Just remember how far we've come!
 

V99

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And just to remind everyone. This is from the Parliamentary 'Inquiry into the status of CFS/ME and research into causes and treatment'. (AKA Gibson report) http://www.erythos.com/gibsonenquiry/Docs/ME_Inquiry_Report.pdf

There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here. The Group find this to be an area for serious concern and recommends a full investigation of this possibility by the appropriate standards body. It may even be that assessment by a medical ‘expert’ in a field of high controversy requires a different methodology of benefit assessment.
page30

and Cookie Monster just added this to another thread:
Prof I. Kimber - shareholdings in Astra Zeneca,Syngenta... See more
Prof P. White - consultant for DWP and Swiss Re-insurance
Prof S. Holgate - consultant for Novartis, Merck,Roche,etc

And the not so insightful:
Prof P Cowen - no declaration made -?
Prof H Perry - no declaration made -?
Prof M Jackson - no declaration made ?

They are all part of the MRC expert group on CFS/ME
 

V99

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Villagelife.

Kerr was the second study, Kuppeveld the third.

And they won't get away with it but there aren't any time machines to take us to the future, so we've gotta be brave and sit this out, Just remember how far we've come!
Agree, agree, agree:victory::victory:
 

VillageLife

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Villagelife.

Kerr was the second study, Kuppeveld the third.
And they won't get away with it but there aren't any time machines to take us to the future, so we've gotta be brave and sit this out, Just remember how far we've come!
Agree, agree, agree
And I am trying hard to build us a time machine.....im just to ill to build it...:rolleyes: But i'll keep trying!!:D