Whittemore Peterson Institute – Throwing Down The Gauntlet
The rumor mill surrounding the XMRV pseudo-replication studies can finally be put to rest. Any further speculation regarding the cohort used in the original studies, the methodology used in replication attempts, and the efforts made by the WPI to supply reagents and positive patient samples (which went unused) is pointless. The line in the sand has been drawn.
Once again, we need to support the science. Please take a moment and make whatever donation you can to the WPI Institute.
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Reposted with permission:
April 12, 2010
Dear Dr. McClure:
On behalf of the Whittemore Peterson Institute in Reno, Nevada (“WPI”), I am writing
you today to ensure that there is direct communication between WPI and your research
team. You may share this letter with others that you deem appropriate, and I will do the
same by sharing this letter with other interested parties in both the United States and the
United Kingdom.
On January 6, 2010, you reported in PloS One that you failed to detect xenotropic murine
leukemia virus-related virus (“XMRV”) in ME/CFS patient samples. In that publication
you reported the following conclusion, “[b]ased on our molecular data, we do not share
the conviction that XMRV may be a contributory factor in the pathogenesis of ME/CFS,
at least in the U.K.” You subsequently made the following statement in your
commentary regarding the Netherlands study in the BMJ, “….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.”
This statement about the origin of the 101 patient samples is untrue. The patients in the
Science study were well defined in the paper as having CFS by the Fukuda and Canadian
consensus definitions of ME/CFS. More importantly the patient samples did not come
from the “Lake Tahoe outbreak” as you assert, but rather from patients who had become
ill while living in various parts of the United States.
We would also like to report that WPI researchers have previously detected XMRV in
patient samples from both Dr. Kerr’s and Dr. van Kuppeveld’s cohorts prior to the
completion of their own studies, as they requested. We have email communication that
confirms both doctors were aware of these findings before publishing their negative
papers. In addition, Dr. van Kuppeveld asked for and received reagents and a positive
patient sample to determine if his testing procedures could in fact detect XMRV in a
positive blood sample before he published his paper. We wonder why these materials
were not used in his study which also failed to detect XMRV.
One might begin to suspect that the discrepancy between our findings of XMRV in our
patient population and patients outside of the United States, from several separate
laboratories, are in part due to technical aspects of the testing procedures.
To help identify the possible reasons for the discrepancies in detection of XMRV, WPI
would like to send you known positive patient samples with controls, from the United
States in an appropriate number, along with WPI reagents, so that we can help you
determine whether your testing methodologies will accurately detect XMRV in a clinical
sample of blood. In addition, WPI would be willing to test a like number of samples
from your patient cohort to see if our researchers can detect XMRV in those samples.
This critical exercise would help resolve the question of whether you are using all of the
appropriate techniques necessary to detect XMRV in a patient’s sample. If your tests are
able to detect XMRV correctly in the known positives, then the debate can appropriately
center on whether we can identify the differences in the patient cohorts which have been
the subject of various studies. It is in this systematic manner that we all may help to
move the science forward; instead of continuing to debate whether or not ME/CFS
patients in Europe are infected with XMRV.
It is also important to note that our initial study was not intended to prove causality of
ME/CFS, but to report a significant association between patients who had been diagnosed
with ME/CFS and XMRV. We believe that there exists compelling evidence to spur
additional scientific review, especially in light of the fact that our team of researchers
also discovered XMRV in the blood of 3.7% of our non contact controls.
I look forward to your timely reply.
Sincerely,
Annette Whittemore
Founder and CEO
Whittemore Peterson Institute
13 Comments to “Whittemore Peterson Institute – Throwing Down The Gauntlet”
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By Tigger Emerson, April 12, 2010 @ 4:15 pm
way to go Khaly
By Heidi Bauer, April 12, 2010 @ 5:01 pm
They didn’t use the reagents I believe because of ego. If you listen to McClure’s interview today she says they have the most sensitive assays. Although, that is followed by mentioning that they tested samples for Kings College in 2 weeks time. WOW!! Those really are sensitive. No wonder they didn’t find anything. There was also heavy emphasis at this point that she is all about prostate cancer and not CFS (quite interesting that no one uses ME in the interview). Think there is a bit of back pedaling going on with her. A great time to hit her with the WPI letter. Ooo… Another Benetar song “Hit Me with Your Best Shot”
The WPI is here to stay and they haven’t even opened their doors yet. Can’t wait to see what they do once they have.
By cinderkeys, April 13, 2010 @ 12:22 am
Very good.
By CFS Facts, April 13, 2010 @ 2:40 am
For those who own a house … consider leaving it to WPI in your Will. It’s a valuable asset that can be sold to support research.
I was told not to have children because they didn’t know the effect pregnancy would have on CFS, so it’s either WPI or some distant relatives with a habit of squandering any money they get.
By Kathryn Stephens, April 13, 2010 @ 3:34 am
Listening to the McClure radio interview today, I was ready to throw up if I
heard ‘chronic fatigue’ one more time! Why do all these media people not
use the full name….laziness, ignorance, or willful obstinacy?
The WPI calling out McClure, Kerr and van Kuppeveld is priceless.
I see Judy Mikovits will be speaking at many events ‘over there’: I’m sure
she will set a few people straight, too, LOL!
Being the adrenaline junky I am, I am so looking forward to McClure’s
answer, aren’t you? LOL
BTW, I am concerned about using the term ME/CFS, as so many seem to
be doing now. My worries are based on the fact that ME is not even
recognized anymore in the U.S., and we have many UK advocates asking
us to join this or that “ME/CFS” awareness campaign. If there is no ME in
the U.S., how can we tack that on to the May 12th Awareness Day?
I can’t remember: was ME part of Tom Hennessy’s original Awareness Day
founding?
Way to go, Khaly, getting Mrs Whittemore’s letter posted here! Great coup!
I know, “coup’s” are not important…well except to us…the disenfranchised.
By sosumi, April 13, 2010 @ 7:07 am
@Kathryn – ME was always part of May 12 Awareness Day. Many people in the US have ME, even if it is not “officially recognized” here.
Here is the history of May 12th – International ME/CFS & FM Awareness Day:
http://www.facebook.com/notes/may-12th-international-mecfs-fm-awareness-day/history-of-may-12th-awareness-day/381277917239
By Jerry, April 13, 2010 @ 11:55 am
However, RESCIND is against using the term “ME/CFS.” You either have M.E. (Ramsay, Hyde, etc.) or CFS (numerous). There are patients in the U.S. who are diagnosed with M.E. I believe Dr. Derek Enlander is one of the Drs. who are diagnosing M.E. in the U.S.
By Jerry, April 13, 2010 @ 3:40 pm
An addendum, there is no such thing as CFIDS according to the entire planet. And when I say M.E. I mean Myalgic Encephalomyelitis, not Myalgic Encephalopathy.
By KAL, April 13, 2010 @ 12:05 pm
Pseudo-replication studies? “blink” Is that what we are now calling any scientific study with results that don’t jibe with what we want them to find?
Basic Science 101: Scientists do two kinds of studies. One type uses the exact same everything to see if the first studies results can be replicated. The other type looks at whether the conclusions of the replicative study or studies hold true if the variables change. Variables include geographical location, definition of the patient cohort, viral strains, assays used etc.
Just because the results of the three European studies thus far do not mirror Lombardi et al’s results doesn’t make them “pseudo” anything. There are multiple reasons why good studies differ in any scientific area. In fact, differing results can provide very valuable information.
In this case, these studies may well indicate that people who are merely tired most likely do not have an infectious disease. This is leading more and more scientists to note that broadening the definition of CFS, or using a definition too different from the one used by the original study, may well have scooped up too many unrelated groups. This may be particularly true in the case of the small Dutch study.
Those three studies have also given scientists other information – raising new and valuable questions. Not all viruses are found worldwide no matter how virulent they may be. That doesn’t make studies in areas that may not have the virus,or where the virus is not widespread, wrong or “pseudo.” Nor do they prove that studies in areas where the virus is found are “wrong.”
Good scientists also then look to see if there is more than one strain of the virus. Testing is very virus and strain specific. We know that the HHV-6 (A & B) virus, also associated with subgroups of patients in many diseases, is strain specific, why not other viruses?
What would be even more interesting is if multiple viruses were to be checked for in the same patients. More than one virus can cause the same disease.
It should be noted that most of us have any way of verifying Ms. Whittemore’s statements although that doesn’t automatically mean she isn’t right – right now everyone just has to take people’s word on this stuff. According to Dr. von Kuppeveld, they asked for specimens and never received them. Without proof it is impossible to say who is right.
Leave the sand kicking to five-year-olds – and I would include scientists in that assessment. Instead focus on the science regardless of the results and without knee jerk reactions as to the “meaning” of it all. There are many more XMRV studies in the works and may questions to be answered and variables to be tested. As Ms. Whittemore correctly notes, an association with a virus has been found. It’s a long, bumpy road to proving that any virus is pathogenic regardless of the disease with which it is associated.
By Alex Young, Australia, April 13, 2010 @ 4:02 pm
Hi KAL
I wear two different hats when I write to blogs and forums. One hat is as a science critic, and I have to say to you that I agree with you almost completely, from this point of view. Failure to replicate a result can tell us a lot about methodological issues, diseases issues, and analytical procedures. They are nearly always usefull.
As an advocate, however, there are different perspectives and arguments to be made. Two of the three “failed” “replication” studies are failures of rigorous scientific procedure, use either non-recognised definitions of CFS (Oxford), or are from patients that were probably diagnosed under Oxford but reclassified under Fukuda; the other merely failed to find XMRV and could tell us a lot. Advocacy is mostly in the realm of political, not scientific, criticism, and a different ethos applies.
On a different topic to the wider audience, when it comes to talking about ME or CFS, I agree that they are different. However, when argueing the science we need to call studies by what groups they involve. Most of the interesting studies that are probably about ME and not CFS use the Fukuda definition of CFS as their primary diagnosis, and in discussing them we have to call them CFS studies. I probably have ME, but the official diagnosis is CFS and that is the one I have to use via a technicality – its is the same principle as when discussing the science. So when I talk about something that could be either or both, I use ME/CFS. To not do so is to cloud the issue, not help it. The aim should still be to eliminate the term CFS and have either ME or idiopathic chronic fatigue, via the Canadian model, but this might become moot if XAND becomes the correct diagnosis. The real issue is what to call studies that use only the Oxford defnition. Personally, I would like to see them called ICF, or idiopathic chronic fatigue studies.
By Alex Young, Australia, April 13, 2010 @ 1:01 pm
Thanks for yet another inspiring blog. We are on the cusp of discovering whether the glowing light we see from the WPI is a Will-of-the-wisp or a beacon of light and hope. We might know this by the end of May, things are happening that fast! I can really see a Nobel prize going to them in a decade or so!
They may yet add themselves to my very short list of medical superheroes, which of today contains only Dr. Barry Marshall, who won the 2005 Nobel prize in medicine for his findings on stomach ulcers. We need more people like them, even if their research is disproved. If you don’t put yourself on the line, you can’t hope to achieve great things.
Then, of course, we need more medical heroes in general, especially since all the medical luminaries who saw the big ME/CFS epidemics unfold are nearing retirement. Oh, of course the WPI are already on my medical hero list.
I really like the way we are reporting our advocacy. These people can’t claim they were never told, as it is all in the public domain.
By Khaly, April 13, 2010 @ 9:45 pm
Craig Maupin’s excellent commentary on Annette Whittemore’s letter to Professor Myra McClure, reposted with permission:
http://www.cfidsreport.com/News/10_Whittemore_Responds%20to_British_Medical_Editorial_On_CFS.html
Whittemore Institute Responds to the BMJ:
European Teams Proceeded with Publication
Despite Knowledge of Positive Results
By Craig Maupin at http://www.cfidsreport.com
(April 12th, 2010) — In a letter to Prof. Myra McClure on Monday, Annette Whittemore, CEO of the Whittemore-Peterson Institute (WPI), strongly responded to criticism from an editorial in the BMJ (British Medical Journal). The editorial, written by Prof. McClure and her colleague, Prof. Simon Wessely, criticized WPI’s publication of a link between a group of CFS patients and a novel retrovirus, XMRV. The editorial based the criticism on several recent studies in Europe, led by Dr. Jonathan Kerr and Prof. McClure, that failed to find any link between CFS and XMRV. Another negative study, led by Dr. Frank van Kuppeveld ,was published alongside the editorial in BMJ. Said BMJ’s editor, Dr. Fiona Godlee: “We fast-tracked it” because the study “added to controversial debate” and “our reviewers thought it was well done.”
In her letter, Whittemore revealed that, even though the WPI’s offered their reagents and technologies to the authors of the studies cited in the BMJ, none of them accepted the offers. In addition, Whittemore asserted that her institute had “previously detected XMRV in patient samples from both Dr. Kerr’s and Dr. van Kuppeveld’s cohorts prior to the completion of their own studies.” According to Whittemore: “We have email communication that confirms both doctors were aware of these findings before publishing their negative [results].” This surprising allegation has prompted much discussion.
Whittemore reiterated her institute’s willingness to share technology, to help validate/invalidate findings and to guide research teams struggling with the detection of XMRV: “To help identify the possible reasons for the discrepancies in detection of XMRV, WPI would like to send you known positive patient samples with controls, from the United States in an appropriate number, along with WPI reagents, so that we can help you determine whether your testing methodologies will accurately detect XMRV in a clinical sample of blood. In addition, WPI would be willing to test a like number of samples from your patient cohort to see if our researchers can detect XMRV in those samples.”
Whittemore continued: “This critical exercise would help resolve the question of whether you are using all of the appropriate techniques necessary to detect XMRV in a patient’s sample. If your tests are able to detect XMRV correctly in the known positives, then the debate can appropriately center on whether we can identify the differences in the patient cohorts which have been the subject of various studies.” However, in the BMJ editorial, Dr. Godlee warns that such cooperation is “unlikely to be soon”.
The published link between XMRV and CFS has seemingly raised the level of discussion about a perceived hard-line stance of the BMJ’s editors toward CFS. In a brash, uncharacteristically trash-talking style in the January 2010 edition of the BMJ, colleagues Dr. McClure and Prof. Wessely said that “technical differences are irrelevant” in many validation studies. Dr. McClure and Prof. Wessely also asserted that “the research community was underwhelmed” by the link between some patients with CFS and XMRV. The authors decried the lack of acceptance of behavioral and exercise treatments for CFS as “depressing” and urged the research and medical community to begin implementing those treatments as soon as possible.
Dr. Richard Smith, a former editor of BMJ, also criticized the journal Science for publishing the link between CFS and XMRV. As evidence, Dr. Smith cited a previous editorial in BMJ that criticized the Science for not publishing the ages and genders of those who tested positive for XMRV. According to Dr. Smith, Science showed itself to be “scientifically poor,” and he accused the Whittemore Institute’s researchers of “hiding behind the skirts of Science. However, Whittemore responded strongly and unequivocally to these claims: “The patients in the Science study were well defined in the paper as having CFS by the Fukuda and Canadian consensus definitions of ME/CFS.” The Whittemore-Peterson Institute has asserted that ages and genders are not necessary for the interpretation of viral research.
Editors at BMJ have long been criticized for bias regarding their portrayal of CFS. According to ME/CFS advocate Tom Kindlon, most “people with ME who have been around a few years would have had a jaundiced view of the British Medical Journal, before any of the XMRV coverage.” Kindlon stated that “basically, no new biological research has been published in the last 15 years in the BMJ,” and the “only people asked to write editorials are those who believe CBT and GET are all patients need.” In a 2000 published review of articles on CFS in BMJ (Journal of Chronic Fatigue Syndrome 12:4 2004), several researchers found that “the journal has consistently ignored non-psychiatric professional views on CFS and were unable to find sufficient scientific reason to justify this stance.”
By kathryn stephens, April 14, 2010 @ 12:52 am
Thank you sosumi and jerry; I knew this, but I guess I am questioning how one can
be diagnosed with ME in this day and age, if there is no diagnostic code for it…if it
indeed is gone from the U.S. medical lexicon. I may know I have M.E., according to
the Hyde and Ramsey critera, but no doctor I know of is going to diagnose me with
it if it doesn’t “exist”, right?
how can Dr. Enlander be compensated by insurance companies if M.E. is not in
the diagnostic codes? Of course M.E. is in the WHO codes, but that’s not what
U.S. insurance companies use.
I agree that even though the studies did not seem to replicate the WPI results,
they do tell us a lot; in particular, they tell us that the term CFS is used over and
over again in an erroneous manner, incuding all kinds of fatiguing illnesses in the
mix.
I believe there are competent researchers who are going to confirm the fact that
XMRV is in the (American, at least) blood supply; there are scientists that will
be using the WPI, CC, and NCI study (don’t we all keep forgetting it is not JUST
the WPI involved here?) as the foundation for some outstanding work. It may just
be that we, the CFS patients, will benefit from it. HOPE