FAQ: Criticisms of the WPI and their XMRV Finding
TEMPORARY NOTE: The criticisms below are all IMO completely unfounded and have been comprehensively and definitively debunked here. Once we’ve gathered that evidence together, I will remove this temporary note. :Retro smile:
NB: The numbers are a temporary ordering for convenience while we construct the list; we can re-order them later...
OPINION: This WPI outfit just seems a bit weird to me. I’ve never heard of them before.
MYTH: The WPI have broken established scientific protocol by revealing their findings before publication.
MYTH: The WPI has irresponsibly encouraged patients to campaign about XMRV before their findings were confirmed.
MYTH: The WPI has been irresponsible in the way it has encouraged patients to pay for XMRV tests, even though the relevance of XMRV is, as yet, unknown.
Originally Posted by Megan
I am not from the scientific world but I get the impression that this happens all the time without people copping such criticism. eg. Myra McClure of the Wessley study revealed positive findings of her as yet unpublished XMRV/prostate cancer study on a radio program in Australia. Didn't Dr. Huber reveal her unpublished (unpublishable?) results at a recent conference? Likewise I recall unpublished results of XMRV/prostate cancers at the CROI conference in February. Weren't the Japanese XMRV blood bank test results revealed at a conference without a published paper? I get the impression it is normal to reveal such things at scientific conferences, or in McClure's case in the media. Why outrage directed at JM and not these others?
It was John Coffin who said at the CFSAC conference last year the "pathogenicity of this virus should not be underestimated", based on the action of closely related mouse viruses in other mammals (and other retroviruses in humans). He was clearly indicating that the scientific community should not be treating this virus is benign until proven otherwise. In this context it could be seen as responsible to be alerting people about it. I would think this is a genuine moral conundrum for any scientist when faced with such a situation.
1. No member of the WPI has ever made a statement asking, encouraging or soliciting ME/CFS "patients" to "pay" for XMRV testing, but has instead encouraged patients to join studies.
2. XMRV testing will inevitably be offered by some private lab regardless of what any group or agency may want. The WPI released their test in response to the release of a test by Co-Operative Diagnostics Ltd.
3. Laboratories offering testing will of course charge for testing to cover their expenses.
4. A significant subset of the ME/CFS patient community is both ready and willing to pay for testing, in full knowledge that the WPI's findings have not yet been independently replicated.
5. Providing WPI-licensed testing discourages other companies from offering over the internet tests that may or may not be consistent with the WPI methodology for detecting XMRV in ME/CFS patients.
Dr. Judy Mikovits (Director of Research at WPI) has repeatedly told lecture audiences to wait, and to sign up for studies in order to receive free testing in a controlled environment. Other members of the WPI staff - including Dr. Daniel Peterson, Annette Whittemore and Dr. Vince Lombardi - have also encouraged members of the patient community to enroll in studies until more information becomes available about the virus itself and whether or not the virus is truly associated with CFS.
Dr. Coffin and Dr. Peterson discouraged individual patient testing at the CFSAC meeting on October 29th 2009, as did Dr. Nancy Klimas in her review of XMRV on November 7th 2009 (read more
). Dr. Klimas encouraged patients to participate in studies but discouraged patients from testing privately.
On October 26th 2009 Cooperative Diagnostics (a private company not associated with the WPI) put out a press release and began offering an XMRV test kit (read more
). This move seems to have prompted the WPI to quickly license its research test methodology to Viral Immune Pathology Diagnostics Laboratories (VIP Dx) but Cooperative Diagnostics was the first company to offer a test to the general public.
The Simplex XMRV test identifies patients infected with XMRV. XMRV has been recently identified in 95% of Chronic Fatigue Syndrome patients, in addition to large numbers of patients with Fibromyalgia, Atypical Multiple Sclerosis, and other clinical conditions. Cooperative Diagnostic’s XMRV assay is the first diagnostic for the virus to be made available to the public.
On learning of the Co-operative Diagnostics test, Cort Johnson contacted the WPI in an effort to find out whether the WPI would offer testing to the public. He posted this response on October 26th: (read more
The WPI has developed a blood test for the detection of XMRV and we are currently negotiating an agreement with a clinical laboratory to allow for limited testing. These services will be made available as soon as possible and we will provide information on this site as to how the test can be requested. We cannot offer individual testing and results from our research lab. Please check back here for updates.
No word on which lab to use. (gotta change my website!)
Two days later, on October 28th, VIP Dx made available on their web site two tests: a PCR test and a culture test. (The testing acceptance wasretrospectively dated
to October 23rd, which created some confusion as to who actually made the test available first. (read more
) ). A statement from the VIP Dx web site indicated that VIP Dx were orientating the test to the physician:
VIP Dx is committed to providing quality clinically relevant tests, accurate, timely results and excellent customer service to aid the physician in diagnosing and managing chronic viral and immune mediated diseases.
We are very excited about our latest technology and new XAND test menu.
In January of 2010 a new lab called Clongen Laboratories began offering an XMRV test (read more
). To date no one has used this lab that I know of and no results are available on their web site.
Many patients find it extremely patronising to be told they are being exploited by the WPI and should wait before more information is available before testing for XMRV. Patients aware of how to obtain a test for XMRV are also fully aware of the situation regarding the research and the fact that the WPI's findings have not yet been replicated by a second research team.
Through such tests, UK patients in particular were able to confirm that the WPI's tests do indeed indicate the presence of XMRV in ME/CFS patients in the UK - contradicting the suggestion by Prof. McClure and others that the discrepancies between earlier studies may indicate that XMRV is not present in Europe. This patient-led finding has made a very significant contribution to the early debate about the potential implications of WPI's research.
Indeed the reporting of such findings in the national press are a sign of the revolution in patient-led research that is represented here. After experiencing decades of failure by the scientific community to undertake biomedical research into their illness, many ME/CFS patients are frankly not terribly interested in being told that they ought not to use their own money to seek the answers they are denied by traditional authorities. If members of the medical research community want to blame anyone for this modern phenomenon, perhaps they should look closer to home.
MYTH: The WPI has a shady connection to VIPdx labs.
OPINION: The WPI have undermined their case by linking their findings to the controversial debate about autism.
OPINION: The WPI’s poor Public Relations skills have undermined their case.
MYTH: The WPI are irresponsibly encouraging patients to experiment with dangerous anti-retroviral medication which is unproven for use by ME/CFS patients.
Most doctors - but not all - would agree that antiretroviral therapy is an inappropriate choice right now. So would most professionals. But about 5% of physicians, and 15% of nurses and pharmacists, actually think antiretroviral therapy should
be prescribed now, because there are few other treatment options (according to this MedScape poll
). And 17% of physicians said they would consider that treatment.
MYTH: The WPI have gone too far in interpreting their results to mean that XMRV is causal for ME/CFS, when it may well be an opportunistic infection.
I'm sorry but we only have one life here on this planet. My father has had parkinson's for over 20 years now. 8 years ago he was offered an experimental surgical procedure that consisted of inserting wire probes permanently into his brain. He had no quality of life. He signed a waiver for the treatment as this procedure was in the very early stages of the research. He was a guniea pig in essence. There was a problem and he was braindamaged. He is however able to move and walk now, as opposed to becoming a living statue and unable to move a muscle from the effects of the parkinsons. ERV knows nothing of what CFS patients live with on a daily basis, and has no right to say what may or may not be good for them. She is also a very rude, foul mouthed child that needs to grow up. If she is as smart as she protrays herself to be she could use her time more constructively then swearing and bashing CFS patients on a blog.
From the outset the WPI have strongly emphasised that their results do not imply causation and that further research is required in order to investigate this.
MYTH: Several other studies have failed to reproduce the WPI’s finding of an association between XMRV and ME/CFS.
To date, there has been no study that has attempted to reproduce the WPI’s methodology. The 3 studies that failed to find an association have all failed to find any XMRV whatsoever, either in patients or in healthy controls. The exact same controversy exists in relation to the association between XMRV and prostate cancer. For prostate cancer, several (?? How many??) studies have found such an association, and (?? How many??) other studies have found no XMRV at all. Of the studies that did report that they detected XMRV, the infection rates found in the general population were 3.7%, 6%, 2%, 4%, … (???). The other studies found no XMRV at all. Assuming that XMRV exists and is found in the general population at a rate of 3%, the probability of valid XMRV tests failing to find any XMRV in 400 (???) samples is 0.000001 (?) %.
XMRV was first discovered in 2006, and methods for detecting it are in their infancy. There is quite obviously a lot to be learned about XMRV testing, but it is perfectly clear that if XMRV does indeed exist, and exists in Europe (as one German study has confirmed) than the negative studies have quite simply failed to find it. So in fact, no study has yet provided any evidence whatsoever to call into question the association of XMRV and ME/CFS. The 3 negative studies have simply failed to detect XMRV.
MYTH: Studies so far suggest that XMRV may only exist in the US and not in the UK and Europe.
XMRV has now been detected in Germany in a similar proportion of the general population to that found in the US. Several (??? how many roughly ???) UK patients have sent blood samples to the US for testing and have tested positive by the WPI's methodology. Whatever the WPI are detecting, it is in Europe in similar proportions. It has also been detected in Japan in similar proportions.
MYTH: The cohort used for the Science study was not well-defined.
MYTH: There were contradictions between the statements made about where the patients in the study came from.
RUMOUR: I have heard rumours that there was some laboratory contamination in the WPI’s Science study.
I have heard rumours that powerful people with vested interests have been spreading unfounded, unreferenced and malicious rumours about the WPI throughout the scientific community. But I prefer to deal in facts rather than rumours. The WPI have categorically denied this claim. Where then did these rumours originate? And how did this supposed laboratory contamination disproportionately affect only the samples from ME/CFS patients and not the healthy controls - and how did it do so in multiple laboratories?
QUESTION: Lots of studies in the past have found associations between viruses and ME/CFS. Those studies never came to anything, why would this be any different?
Many studies have indeed discovered increased levels of various viruses in ME/CFS patients. This new research, however, associates a retro
virus with ME/CFS, and the strength of the association is greater than any of the previous findings with viruses.
Retroviruses attack and undermine the immune system, rendering infected individuals more vulnerable to infection with viruses as well as causing further immunological abnormalities. Since both phenomena have been reported in numerous studies of ME/CFS patients, the finding of a retroviral connection naturally suggests that XMRV may be the "puppet master" that opens the door for these other opportunistic infections.
So far from being thrown into doubt by the previous suggestive findings that never led to a complete understanding of ME/CFS, this discovery could potentially explain
those other findings.
Evidence suggesting the association of ME/CFS with retroviral infection has been reported before, in the 1980s in both the US and Australia. Those early findings were not reproduced, but since retrovirology was a relatively young science in those days, it is entirely possible that the significance of those results was not fully appreciated at the time.
Just because previous viral associations have not led to a crucial breakthrough is no reason to believe that this latest finding will not do so either. Indeed by this logic, one could argue that previous research has failed to explain ME/CFS, so why would any future research explain it? One day, ME/CFS will be understood - and this finding is one of the most promising leads we have ever had.