A lot of the dissension here feels like the squabbling of a lively, dysfunctional family, with lots of crazy relatives:). Lately, there’s been some progress in being more respectful of one another. But this being the internet, there are strangers in our midst, trying to find chinks in our nonexistent armor. That’s fine, for we are here to look at the truth. The naysayers are an opportunity to sharpen our thinking and confront rumor head-on.
I decided to blog because I couldn’t stand all the suffering in isolation. Even as a doctor, when my family got sick and started seeing Lyme doctors, there was a feeling that there were people that knew something that I didn’t, a way in which the information wasn’t freely given. I now think that happens because of everyone’s unwillingness to admit what they don’t know, even to themselves.
My only serious concern about my outspokenness on the internet has been the recent comments that my being controversial might somehow hurt the WPI. For this reason, in part, I have elected to be a consultant for the WPI, as an independent contractor, rather than an employee. I’ll take this opportunity, in advance of an announcement on the WPI website, to say that the opening of the clinic will not take place in May as hoped, primarily because of financial constraints. Our plans remain unchanged however, and I am hopeful of opening before the end of the year.
So let’s take advantage of our devil’s advocate, John, who has questioned both the science and integrity of the main protagonists at the WPI. With permission, I’d like to tell you what I’ve learned about the institute and the people involved. In particular, I’d like to address the oft heard thread that runs something like this: the Whittemores are richer than God, so why don’t they just cough up another few million dollars to save us?
Here is the reality. At a time when money was not as big an issue as it is now, the Whittemores, and other concerned patients, joined with Redlabs, owned by Dr. De Meirleir in Belgium, to start VIP Dx. This happened at great personal expense because a clinical research lab was needed to save their daughter, and others. The “and others” make the Whittemores special. They didn’t just have the money. Lots of people have the money. They thought about the problem and applied the money in a way that no one else had done before. It wasn’t about money, but the embodiment of parental love. This all happened well before there was a research lab. XMRV as a cause of CFS wasn’t even a twinkle in anyone’s eye.
Everyone knows that Harvey and Annette spent many millions, and raised millions more, to fund an institute so that everyone would be helped. They brought together the necessary ingredients in the form of Mikovits and Lombardi. Having heard the story from each of them and others, it was a synthesis of talent, skill and luck, as genius always is. The WPI scientists support and promote each other’s contributions, a rare thing in the world of science. Also unheard of, everybody passed up any intellectual property rights in favor of the institute. Any interest in eventual profit from the use of the WPI’s intellectual property by VIP Dx was passed to the institute when it was founded.
When the Science paper was published, a lab called Cooperative Diagnostics, owned by a scientist named Satterfield, brought an unvalidated test to market for XMRV, even though they had never found it in a human being. Their test was a PCR for a VP62 plasmid. Recently, in an interview with Cort Johnson, Dr. Satterfield admitted that they never did find it in anyone. More of the “I can’t find it, so it isn’t there” insanity. I thought it pretty strange that he isn’t ashamed of having charged people a bunch of money for a test, even though he knew that he had never found XMRV in an actual patient. How can you disprove an association, if you can’t find it all?
Dr. Satterfield’s attempt to jump into the market, forced VIP Dx to bring a test to market, even though there had been no intention to do so until further research was done. But the prospect that there would be a flood of negative test results that needed to be immediately challenged forced their hand. At that time, it seemed likely that the major commercial labs would be testing soon, so it was considered a band aid for the short term.
The first 10 people who write to me that have a receipt for a negative test from Cooperative Diagnostics will be tested at VIP Dx for free. Email: jdeckoffjones@gmail.com. Also, if anyone received a positive test from Cooperative Diagnostics, I’d like to hear from you.
So testing for XMRV is a gold mine, right? Wrong. VIP Dx hasn’t even begun to pay back the original founders, nor can it cover all of its current existing expenses. It pays WPI a royalty (calculated as the net profit for administering the test) that puts it further in the red. Some of the founders donated their holdings or had their holdings placed in trust for the benefit of WPI. And Harvey, who manages the lab, has never been paid a dime. Never. The lab exists to unravel the mystery of our illnesses, as it was intended from the beginning. Here’s the truth. VIP Dx has lost almost a million dollars since inception. Not accountants fiddling with red ink, but real losses. I have seen the actual numbers. Anyone want to donate to the cause?
I can tell you that in planning the clinic, VIP Dx is just as important as the WPI translational research lab. Integral parts of a unique whole. Dr. Lombardi will make available any testing that our doctors decide we need. He is looking into the tests I have asked for, so that they will be available when we open. They recently moved into their new state of the art facility next to the clinic, a tremendous undertaking. All testing done in the clinic will go into our database, so contributes to our overall understanding of the illness and how to approach it.
So why don’t the Whittemores give some more money? Because they don’t have it at the moment. If they did, they would. In my opinion, everyone who has spent a few dollars on an XMRV test from VIP Dx is contributing to the greater good. The sooner we start to think about the illness as related to XMRV, or another related but unspecified human gamma retrovirus, the better; it will affect those we tell. Personally, I’ve had good luck explaining my illness to the uninitiated as “a newly discovered retrovirus like HIV that isn’t fatal”. We are in much better shape now, with our decisions informed by this understanding, than we were before. Understanding is everything to me. For that reason, no matter how it all turns out, I owe my hugely improved quality of life to the Science paper. I’m still sick, but living in the light.
As for Dr. Mikovits being right or wrong? She questions herself every day, as any real scientist would. Clearly, she (and the WPI) were unprepared for the thousands of desperate patients who turned to her, all needing immediate help. She is a deeply compassionate person and has trouble telling patients that the science is going to take time. She bleeds for us. A consummate scientist, not a politician, she is under unimaginable pressure, caught in the center of the perfect storm. We all owe her a debt of gratitude for what she has already given.
Finally, I have spent time in the labs of both Drs. Mikovits and Lombardi, in two different places many miles apart. They can both grow the virus. Not from everyone, but in a significant percentage of patients. I wonder how they keep contaminating only some of the samples. To John. I will address your objections 1-8, 9, 10, 11….99, 100, etc. in a future post. But it is my belief that if you use the methods, materials, and processes outlined in the Lombardi paper, in an appropriate sample, you will find XMRV. Other labs besides these two can find it. We know that there are plenty of people out there who can design and complete a PCR study looking for XMRV and not find VP62. They know, and we know, that they are looking for the wrong XMRV and using the wrong methods, materials, and processes. It is that simple.
>Thank you Dr. Jamie!
We are all behind you, the Whittemore's, Dr. Judy, Dr. Lombardi, and all the people we may not know about.
You can count on us to support you every way we can.
~ JT
>dr jamie, what can we do for dr mikovits to support her? — rivka
>I always look forward to your posts, Dr. They are a light in the darkness. Thank you!
>Thank you for this e-mail Dr Jamie. I hope that WPI gets the support they need soon. I have and continue to support WPI for its research, its people are one of very few that understand and support patients with neuro-immune disease.
Like dr Montoya said in his recent talk at Stanford, I really hope that the doctors that have denied us care and treatments, one day appologize to us. This illness is hell on earth.
>I cannot possibly agree that selling expensive tests for XMRV is "the greater good." This amounts to CFS patients getting scammed because of their non-critical acceptance of XMRV. Is scientific consensus no longer necessary before they start bleeding patients of money? I find the WPI's — or anyone's — profit from these ridiculously premature tests to be extremely unethical. This is a lot of money, with no insurance coverage, for patients who usually don't have cash to throw around, and for results that at this point in time mean less than nothing.
In a future when XMRV a) has been found by enough non-WPI researchers under the right (not necessarily WPI's) methods, AND it has been proven associated with CFS, then there will be far better tests that will actually mean something. Until then, patients are getting fleeced.
>Joey doesn't get that patients, through payment for the test, give consent to get their blood tested, because there is no other alternative for them. I did. I don't regret it a bit. Patients seek answers, when none have been given to them for DECADES. Science has been put to a stop due to the no funding situation and institutions that do bad science.
>Dr Judy bestowed upon me the GREAT honor of using my labor… truck and trailer to help move the WPI from its temporary digs at the UNR's "ARF building" up to the new Whittemore Peterson Institute.
(University of Nevada, Reno – Applied Research Facility)
Yes, it was quite the undertaking, and took a lot of trips, but with our combined efforts, the job was finally done.
Harvey, Annette and Dr Judy thanked me for my assistance as I remarked upon the incredible irony that an Incline Village survivor and prototype for the 1988 Holmes definition was allowed the rather unexpected privilege of taking part in another critically important event in the history of CFS.
The WPI's amazing discovery is entirely consistent with my experience, and I have no reason for doubting the role of XMRV in CFS.
I anticipate great things from the Whittemore Peterson Institute.
>Hey Kati? We may hold different opinions but there's no need to reply with that tone, let alone that assumption.
This is a gigantic problem in the CFS community right now. Patients are "communicating" with no interest in establishing a dialogue. Surely more than one opinion can exist in the comments of a blog post without their owners having to be disparaged.
>Joey, tone is really hard to "get" from an e-message. My appologies if you interpreted it as rude. More and more patients know their x status. i am just saying that if you want to know, and you can afford it, why not?
Respectfully, Kati
>"The sooner we start to think about the illness as related to XMRV, or another related but unspecified human gamma retrovirus, the better; it will affect those we tell. Personally, I've had good luck explaining my illness to the uninitiated as "a newly discovered retrovirus like HIV that isn't fatal". We are in much better shape now, with our decisions informed by this understanding, than we were before. Understanding is everything to me."
What about people like me who – have been tested for XMRV NEGATIVE, by REDlabs – but have been tested for low NK cells (very low), VERY HIGH RNaseL, positive for HHV-6,7, EBV, are diagnosed with ME/CFS by a specialist like Dr.Meirleier ?
Am I one of the 6-30 % of ME/CFS patients not testing positive for XMRV ?
(Was I miss-diagnosed? I doupt it, since my son is also diagnosed ME/CFS, with re-activated viruses and same immune abnormalities)
Or is it just possible that XMRV is not the cause of ME/CFS ?
(Personally, although I am not XMRV positive, I believe XMRV (HGRV) would fit the ME/CFS puzzle very much.)
Is the test by REDlabs not sensitive enough ? (Why put it on the market ?)
Help me understand ……
Karina
>Help the WPI with a single dollar and up, join us in creating a gentle rain of donations every 20th of the month. Please stand, sit, or lie down and be counted in!
Count ME In! is a patient created funding initiative. If you read one more web page today, please make it this one:
http://countmeincampaign.blogspot.com/?zx=b0a67147cd8a4550
>"Joey" your insistence that patients are being fleeced is highly insulting. If you actually bother to read Jamie's blog-post you will see that VIP/WPI had no choice but to make their test publicly available since Satterfield had already entered the market with a 100% negative pin-prick test. In order to protect the integrity of their work, WPI/VIP had no choice but to offer a test.
Patients however do have a choice! If you don't like the test, don't have it! Simples! Even a meerkat could understand that.
The test is offered purely as a research test. No one is forced (or even encouraged) to take the test.
As for being part of the "CFS community" unlike you I don't have "CFS" (whatever that is). I have a progressive neurological disease known as ME. Unlike you I don't have the luxury of waiting decades for "scientific consensus". I am interested in cutting edge research & treatment.
If you are not, I suggest you look elsewhere. I suggest you try CBT, since right now that is what passes for "scientific consensus" in much of the world.
>Dr. Mikovits is secure in the results of her research because she is a consummate scientist. She very deliberately and meticulously sees that procedures are done correctly in the WPI laboratory and rigorously confirms that contamination is not occurring.
I believe it is incorrect to imply that Dr. Mikovits is insecure in her scientific conclusions because of the fact that she is human. Unless someone is using a robot, any scientist would be human and might, at odd times, have a moment's doubt as a human being. However, Dr. Mikovits is an exceptional human being and an extraordinary scientist. She can be secure in her results, and I am sure she is. If she were not, she would not have submitted them for publication, and they would certainly not have been published in SCIENCE.
Patricia Carter
>The only way the science has continued is because they showed that the restults from the UK could not be down to geographical distribution. That's the advantage of the commercial test. It is either in patients or it is a contaminent. They were the only two options and the science strongly supports that it is there. Still no evidence for contamination fits the observations – there is no evidence.
These other researchers need to start applying the scientific method, as others are doing, or they will be remembered for entirely the wrong thing at the end of their career.
Jaime, you have not damaged the WPI at all. People say that as a tactic to get rid of a you as you speak up and out.
V99
>I know there have to be other people with some money who have been touched by this illness. They need to start pitching in more. The government needs to start giving the WPI grants.
I think most can see that Vipdx is offering their XMRV testing with the intent of helping patients. No one I know that has taken the testing has said they feel fleeced. In fact most seem extremely grateful to have the opportunity to be tested.
>karina:
There are hypothesises that a culture test does not always find the actual virus since the virus sometimes stops replicating in the bloodstream of the sick, as strange as this might sounds. However the antibodies are still there, so many are now retested positive using serology. I believe som more light will be shed on all of this soon.
>First off, yes I have questioned the science behind XMRV research (on all sides of the debate) and continue to do so, and second, no I have not questioned the integrity of the WPI, it's founders or it's employees.
My point stated in previous comments was not that the Whittemores, WPI employees, etc. are financially motivated by either the WPI's research itself or by XMRV research in general (in fact I'm still waiting for someone to tell me how giving away millions of dollars of one's own money constitutes a money grab), but rather to say that the WPI's and/or it's associated laboratories decision to sell an unapproved diagnostic test in order to fund research for their institute was and remains a significant potential conflict of interest in them admitting potential error in their previously reported findings. No more, no less.
As a matter of fact the WPI's financial contraints are at the heart of this potential CoI, not proof that there is none. If the WPI and it's associated labs are so cash-strapped as we have heard, how in the world could they possibly refund the potentially hundreds of thousands of dollars taken in thus far should XMRV be found to be a contaminant? It's one thing to offer a legitimate test which is of questionable value, it's completely another to offer a test which tells a person that something that is there when it actually isn't. Not to mention that it's not only CFS patients who are getting this test done but also other disease groups. These individuals are not going to be as potentially forgiving as the 'CFS faithful' should XMRV research be a wash, if you ask me. Also a potentially enormous controversy was barely avoided by peer-reviewers' decision to not publish WPI's reputed XMRV/autism study. Do you really think CFS needs something like the Wakefield study to happen? It almost just did, thanks to the WPI. And this is supposed to result in a greater good?
Basically, the WPI's decision to sell this unapproved XMRV test almost immediately following the publication of the Science paper, despite declaring no financial conflicts of interest in this paper, remains a fairly controversial decision among the scientific community at large as far as I'm aware and does not help further the discussion. In my opinion the more responsible thing for the WPI to do would have been to advise patients to not spend money on a diagnostic test at this time, not to sell them one themselves. It also doesn't help that the basic dogma of the labs associated with the WPI is along the lines of 'Test negative? Don't worry, we'll keep on testing until you too get a positive result!' Whatever, man. This doesn't even bring into the discussion the fact that other 'XMRV positive' groups such as the Cleveland Clinic won't even use XMRV antibody tests to characterize patients in their own research, much less sell the goddamn things. Put simply, the WPI can't get funded and is relying on these unapproved tests to generate substantial funds for research and if people are going to go around making wild claims accusing a substantial proportion of the world's researchers of scientific fraud, conspiracy, etc. then the least they can do is acknowledge a documented conflict of interest on the part of the WPI, no matter how good their intentions are. This isn't about vast and enormous conspiracies, it's about real world circumstances. And yes, I know all about Prof. Simon Wessely, UNUM, PACE, the UK's MRC, etc., and none of these issues even begins to explain the entire XMRV controversy as much as XMRV advocates wish they did.
>I think one way to help Dr Mikovits is to reduce the pressure on her. I was fairly alarmed to read in a recent article that she has to spend a fair bit of her time talking to distraught patients on the phone. That can only slow the science down. There are so many of us that if we all rang, we would take too much time away from her scientific work, so please folks, desist. The needs of the many outweigh the few…
>Since you brought up the relationship with Dr.DeMeirleir and his RedLab in Belgium, what exactly happened? He complained about what WPI had done to him, and he manufactured the H2S test for RedLabs (never mind the intellectual property issues). Is that still part of WPI? Is Dr. DeMeirleir still part of WPI or VPI/Dx?
>Cheers Jamie,
I can't turn to family to help raise money!
I can barely cope with my own worry.
I'm too scared to get tested for XMRV!
I live in the UK, if I test positive for XMRV, how long before my children get tested?
How long before there is treatment?
I think XMRV has battered my body and my life. I think XMRV is stealing my childrens life.
I think XMRV was probably the casue of my paternals Nans MS.
However thanks to the UK psych/prpoganda lobby, I have no trust in the NHS, UK gov, or UK media to aknowledge HGRVs, let alone test and treat.
The litany of abuse patients have withstood for decades is PUBLIC record, the patients own public record, the internet!
The psychs so convinced of their own infalablity forgot to leave any riggle room for 'plausable deniabilty'.
The trail is littered with evidence. Evidence that points directly to psychiattrist colluding with health insurance/ NHS and government departments, to deny financial aid, medical tests and treatment to people with ME.
Theres been a lot effort put into sweeping us under the carpet,
The only unaswred question that remains, is why?
I totally trust the WPI's Annette Whittemore and Dr Judy Mikovits.
I've seen the same look of shock and disbeleif on their faces that I know has been on all of ours.
They are not politicians, they are not jobsworths, they aren't init to win it, they're in it to cure it.
If you want treatment for ME donate to the WPI, get tested please, I don't have the guts.
But if you do have the guts, and you can afford to, please, please get tested, via the WPI for XMRV/HGRVs.
fly
>Hi jamie,
I love reading all your blogs, always look forward to them.
love crafter Kate xoxoxox
>I am one of those with a negative XMRV test from VIPDx. Dr. Cheney tells me he believes it is a false negative, and that often the sickest patients (like me) come up negative. I have staggeringly low natural killer cells, and he'll allow me to start GcMAF if my IL-8 and Nagalase levels both come back abnormal.
I would quarrel – but only slightly – with your description of XMRV as being like HIV, but not deadly. It doesn't kill in the same way that HIV kills in the absence of treatment – quickly and dramatically – but it is likely that it contributes to a number of things that give us a markedly shorter lifespan. I'm guessing that your description might be a bit of a quick-and-dirty one for the uninitiated, in which case I understand where you're coming from.
-Jocelyn
>To me it is ridiculous that there is controversy over VIPdx tests. I know that they have been proven. I was happy to be tested. Nothing at this point in time is perfect. We are human and can only do what seems best from our own point of view. I believe that I am as well educated on this illness as I can be at this time. I am making considerable progress with improving my health on antiviral med. Whatever I can spare will be donated to the cause. I have been donating small amounts to disaster relief but it seems to me that this disease is also a disaster and we do not have the support of the world at this time. So I am rethinking my priorities. WPI is my best hope. Marilyn Bloomer
>People get tested all the time using conventional tests for Lyme and other things that have a high failure rate. No test is ever going to be 100% accurate. Do people with Lyme continue getting tested with a test that has a high degree of false negatives. Yes they do. Do they get there money back if the test is wrong or flawed. NEver to my knowledge.
If people think it's wrong to have the test then just don't have the test. Patients are smart enough to decide for themselves whether it is worth it or not. Most patients are there own doctors anyway at this point.
>Hi jamie
thankyou for this. it is hoped that people who are unable to detect a polytropic/xenotropic hybrid, polytropic or modified polytropic MLV related viral sequences in the blood of people with ME/cfs will resort to the well know if all else fails strategy
this strategy is known as follow the bloody instructions!!
PCR is an enzyme driven chemical reaction and I offer the following scenario
A chemistry teacher gives a child a protocol for a chemical reaction and tells the child to conduct the reaction and then come back with details about the yield and other information about the product
After a period of time the child returns to the teacher
"Well" says the teacher
"There was no product miss"
"Did you follow the instructions" said the teacher
"NO miss" said that child
I will leave the next comment of the teacher to the readers imagination
I,m not sure who John is but if he cares to follow the trail of MLV related viruses since discovery he will see that the problem is not that VIP-Dx is selling an unvalidated test but that scientists who fail to find the viruses use unvalidated assays
I noticed that the WPI wicki page had been hacked and there was the usual untrue rubbish inserted
One of the claims which I noticed was that Dr M worked behind a bar
It struck me that it was much better that a sober scientist worked behind a bar rather than scientists designing and conducting studies as though they were drunks on the other side of the bar
>I have every confidence in WPI and Judy. The Whittemores could have just used their money to find care for their own daughter, but they thought of all the others too. I appreciate that so much.
No one is forced to take the test for xmrv and Judy has made it clear that we can help further research with our samples. I consider that to be a honor, but it is still completely voluntary. What does anyone else care what I do with my blood?
Medicine and scientific research is fraught with politics. There are a lot of egos involved. The patients' needs are not always put first in this world. There is big money and powerful interests at stake.
I have been involved with Lyme and ME and they are both diseases that the powers that be do not want to acknowledge. They are kept in their place by denying research money and hounding those who attempt to treat. A retrovirus would explain both of them.
Only good research will solve these diseases. So why not give WPI the grants and let science work it's way out? What are they afraid of?
Ann
>Dr Deckoff – if you're trying to communicate w/john you should probably hang it up – all of the many posts i've read that he generated sound like intellectual flogging of a miniscule scope – one point hit over and over and over and over. you must be as tired of reading them and trying to respond rationally as all of us are. so why don't we stop right now and agree john is always right on everything and his opinion is highly weighted? that way he (whoever the hell he is) can go on to his next windmill and we can have something interesting to read – sans john.
>Argh! I wrote this great comment about how grateful I am for the Whittemores and all at WPI, and how some of us patients are just wondering about the description of the disease as "not fatal," and suggesting alternate wording, and how it's great to see many of our dysfunctional family pulling together for Count Me In and for an emergency effort to help a fellow patient at high risk in Australia, and how grateful am for all you do to keep us in the loop—and Blogger ate my comment. So consider me to have said all of the above, but far more eloquently.
To describe the illness, what I try lately is something like, "an infectious neuroimmune disease that's been linked to a retrovirus like HIV, and like with AIDS the deaths are from complications like cancers and heart disease, but unlike with AIDS a person may suffer with the disease for decades before death… and more research funding is urgently needed!"
Thanks for another great blog post!
~ Kassy
>John, there are two problems with your assertion that "the responsible thing" for the the WPI to do would have been not to sell a test and to recommend to patients that they not be tested.
Firstly, this assumes that patients are child-like and incapable of making an informed decision as to whether they wish to be tested or not. No one forced patients to be tested, nor was the experimental nature of the testing concealed from patients. You seem to wish to protect patients from themselves.
Secondly, that wish to protect patients might be warranted if there was a clearly accepted scientific consensus on this illness and how to treat it which the WPI was violating. The problem is that, as you and everyone else well know, there is no consensus on this illness nor is there any reasonable treatment plan offered by the medical establishment. Therefore, the only option for patients who wish to get better is to look around for any options that might offer them hope, either now or in the future. They can try alternative treatments or they can try experimental but partially validated tests and treatments like those offered by the WPI.
What would the purpose be in shutting down a line of inquiry that offers hope and a promising avenue of further research? It's not as if CFS/ME patients have many others on the horizon.
>Ty for this article. Go team wpi!
Support the count me in campaign.. its money well spent imo.
>Dr. Deckoff-Jones,
Thank you for this wonderful post. It answers some questions I had. I think it is unreasonable for naysayers to call into question the motives of WPI. That said, it is incredibly helpful to have as much information and informed perspectives as possible about the situation which we can use to respond to these doubts. The more transparency the better.
I really admire the Whittemores giving so much to our cause as there are so many with money who have children with ME who don't give anything (like my parents) to our collective efforts. There isn't much of an excuse for those who have the means but don't give anything, imo. I don't think the Whittemores should be expected to bear this much (or more) of the burden. I am thankful for every dollar and minute they give!
I am glad you have decided to be a consultant and continue the blog. We're with you and WPI as always!!
>Dear John,
How going after insurance companies and doctors for fraud? After all 99% of them have no intention of doing anything whatsoever to assist those with CFS but have no problem taking money for a visit or monthly insurance. Your work in this area would be far more beneficial than what most people see as a one time donation to WPI. I most certainly do not see money going to insurance companies and doctors as a donation.
Thanks for your help in this area!
>Joey, John & others,
If VIPDx/WPI & Redlabs pulled the XMRV tests available to the public AFTER Co-operative Diagnostics took their flawed, never worked on anybody, test from the market (the only reason VIPDx released the test in the first place, a counterpoint to a blatant money-grab) there would have been outrage from taking away.
They are damned if they do damned if they don't
>I love the idea of John going after insurance companies and doctors for fraud, those very same people who always take our money but never try to help us. What an idea for you, John! Sic em!
>I haven't followed this blog as long as some. I recall seeing only two other comments from John. I think his comment on April 20 is well made. I concur with his opinion that the principled action would have been for WPI to emphasise the early and unproven nature of the scientific investigation back in 2009 and to discourage patients from purchasing any unproven test. The unfolding of scientific investigations subsequent to the publication of the initial study in Science in 2009 shows that, as a tactic to head off scientific criticism, early release of the VIP Dx test was ill-conceived.
>"Jayne" or "Joey" or whatever you want to call yourself, if you had taken the VIP test you would have realized that the consent form did emphasize that the test was a preliminary research test. Clearly you are not interested in pesky things like "facts".
The unfolding scientific investigations subsequent to the initial Science paper show that the release of the VIP dx test was *very* necessary. To release the test was a no-brainer (a bit like you).
>Garcia, why is it so necessary to be insulting to Jayne? She is expressing a reasonable point of view. I don't actually agree with her, but this is a complex issue, and I think there should be room for differing points of view. WPI made a choice in putting out the test, and you can be sure that there was plenty of internal debate and discussion about the implications of doing so. While the test contributes to their research agenda, both with data and with funding, it has the potential to bias their research in favor of XMRV (though I doubt it would actually bias the researchers), and it has the potential of misleading patients, despite the disclaimers on the consent form. At this point, I think that the good outweighs the bad, and I agree that people should be allowed to be tested if they so choose. But I don't think you have to be stupid or dishonest to have another take on this issue. How about some civility and open-mindedness?
>Agatha,
When one's mind is so open their brain falls out. I am unfamiliar with anyone holding a gun to a patient's head requiring them to get tested. As has been stated ad nauseum, most people felt that they were supporting the WPI by getting the test done.
Presumably Jayne doesn't have any problem patients paying an insurance company well over the cost of one XMRV test from WPI each month and have the insurance company tell patients that no CFS visits/treatments will be covered. Guess that's just fine and dandy.
Patients do not need to be protected from the WPI. It's that simple. If you have a different take then you are selling the equivalent of the Brooklyn Bridge.
>Brilliant post Anonymous! :P
>Wow! Things are getting pretty hostile here. I don't think Jayne or John or anyone here is saying that WPI is evil or dangerous. And I'm quite sure everyone would agree that insurance companies often are. The point, I think, is that WPI should maintain the highest ethical standards, because it is one of the good guys. People can differ about what constitutes the highest ethical standards without their brains falling out and without selling the Brooklyn Bridge. Good grief! If I'm your enemy because I'm defending some other people's right to respectfully disagree with you on a point like this, then you are going to find yourself in an extremely small, embittered and embattled group of like-minded people. What does it hurt to listen to others respectfully and answer their arguments without insults?
>Agatha, you are the Jayne or John or whatever, are a small, embittered and embattled group of like-minded people. What does it hurt to listen to others respectfully on the facts of the science and answer their arguments without insulting the WPI?
>>Dr Deckoff – if you're trying to communicate w/john you should probably hang it up – all of the many posts i've read that he generated sound like intellectual flogging of a miniscule scope – one point hit over and over and over and over. you must be as tired of reading them and trying to respond rationally as all of us are. so why don't we stop right now and agree john is always right on everything and his opinion is highly weighted? that way he (whoever the hell he is) can go on to his next windmill and we can have something interesting to read – sans john.
There's an odd dynamic on this blog, where certain points of view — regardless of the apparent intentions or thoughtful arguments of those who express them — are judged to be unacceptable and forced off.
That doesn't do much for the credibility of the blogger, those who read the blog, the WPI or the CFS community in general.
How many times does it have to happen before this officially becomes a cult?
You've forced off one group of people (mold) already. Is it now time to force off anyone who expresses any concerns about WPI as well?
>there are people who base arguments on facts and those arguments can be insightful and thoughful.There are others who think that their arguments are thoughtful even though they are based on nothing but prejudice and preconceptions.
john joey etc fall into the latter category.These latter pontifications are characteristic of people welded to a point of view and wedded to a cult.Sadly these people are blind to their conditioning
>It might be worth mentioning here that the "Joey" who has posted on this comments section is not the same "Joey" (mojoey) who posts frequently on various CFS boards and heads up the "Healkick Young Adults Forum" that Ali Deckoff-Jones mentioned a couple of weeks ago.
>Dear Agatha – You are the one in the minority. You are attacking the WPI's intentions and integrity. In comparison to what? Simon Wesseley, the CDC, CAA? At some point, you have to put a stake in the sand and get behind someone. If you want to attach your star to Simon so be it.
There is certainly constructive criticism that can be made of WPI but like others I don't think their intentions and integrity is an area that is open for debate – especially by John & Jayne Does on the internet.
>O.K. so what is the "constructive criticism" that could be made, without raising your hackles? And it's amazing to me that you are casting me as your opposition. I actually have never questioned or doubted the WPI's intentions and integrity. Look back at my posts. I disagree with Jayne and Joey and John. I agree with you, at least about the WPI. I am completely behind what the WPI is doing, and I am a donor to them. On this site, I am absolutely with the majority view. The only way in which I have disagreed with anyone (other than Jayne, Joey, and John) is by objecting to the extremely hostile tone toward their contributions. It's actually healthy to hear and to argue with the other side of an argument, but it can be done respectfully. That's it. Don't cast me as your enemy just because I'm asking for civility. John and Jayne and Joey may be wrong, but they are putting forth arguments that can be attacked directly. No need for hostility and insults. And please stop mis-characterizing my point of view. I have never said a word against the WPI, nor would I.
I think Jayne and Joey and John are wrong for a number of reasons. Number one, I agree that most, if not all patients who have had the test for XMRV are doing it to support the research as well as to have the information, and are aware that we don't really know what to do with the test results yet. Number two, I don't think the WPI researchers are likely to be swayed by the existence of the test (or by the fact that their research benefits from its existence) to be biased in their research. I am quite confident that their number one commitment is to solve ME/CFS. And number three, I think that, following the study that came out in October 2009, many patients would have insisted on some sort of test and would have felt desperate and furious if they couldn't have one, and it was more responsible for the WPI to go ahead and address the demand directly than to let greedy charlatans with no interest in patient welfare offer a bad test, which is undoubtedly what would have happened (and was already happening). I think the WPI's actions in offering the test have benefited patients overall, no matter what the outcome of their ongoing work on XMRV.
>Ah yes, we have here the denialist tactics in full bloom:
1. Raise "grave misgivings" under the guise of "concern" and "objective disinterest" (misgivings which, as others have noted, are absurd in comparison to the real issues that have plagued ME/CFS for decades and through which these "genuine" critics were nary to be found).
2. Make broad unfounded claims about what is "controversial" (despite the fact that none of the actual participants deem it as such) and what the "scientific community" thinks.
3. Play the victim when others point out this plethora of nonsense. Label disagreement and refutation as "hostility."
John, Jayne, Agatha: you people need a new tack because the wind has changed and left you out to sea.
>I wrote a previous answer to my critics above, but it wasn't posted. Perhaps it was too long. I am not happy that you are characterizing me as an opponent or critic of the WPI. I am behind them 100% and have donated to them. What I am objecting to, which should be obvious from my posts, is the aggressive hostility toward other points of view. That some people here are being pointlessly hostile is clear from the fact that I am being classed with people who are criticizing the WPI and dumped on for that. All I said was that people who think the WPI acted unwisely in making the test available (which is all I read from Jayne and Joey and John's posts, although you may disagree with my interpretation of their posts) should not be insulted as stupid or dishonest. They may be wrong….in fact, I think they are wrong. But that doesn't make them evil.
Just so you don't keep mischaracterizing my viewpoint, I will explain why I think they are wrong, although others have already said all of this. I think most, and perhaps all, patients understand that the XMRV test is currently experimental and that they are supporting the WPI's research agenda by having the test. I don't think patients are actually being mislead or hoodwinked. I think the WPI's intentions are quite pure, and I trust the researchers there to pursue research in the best interests of patients. I trust them more than any other entity right now. I also think it was very smart to offer the test as quickly as possible, so that desperate patients wouldn't be victimized by those who were offering a less-good or useless test. I feel protected and defended by the WPI, and I wish they had huge funding from the NIH. That's my position.
>Perhaps Dr. Satterfield still works for the government? See his resume below from Cooperative Diagnostics:
Cooperative Diagnostics Management
Brent C. Satterfield, Ph.D., President and Founder Prior to founding Cooperative Diagnostics, Dr. Satterfield helped to cofound Arcxis Biotechnologies with several of his inventions, including microfluidic sample preparation, diagnostic tests, and probe technologies. One of his more notable inventions was the Tentacle Probe, a new class of DNA diagnostic probe that is up to 200 times faster than other probes, up to 10,000 times more specific in high concentrations of contaminant, and up to 13 times more more robust in extreme temperature conditions. His diagnostic design abilities have been utilized by a number of large organizations including the directors and managers of Sandia National Laboratories, United States Army Medical Research Institute of Infectious Disease, Department of Homeland Security, National Biodefense Analysis and Countermeasures Center, California Department of Health Services and Kaiser Permanente. Dr. Satterfield graduated summa cum laude with honors from Arizona State University with a B.S. in Biomedical Engineering. He received his Ph.D. in Biomedical Engineering from Arizona State University while dual-enrolled at UC Berkeley on a fellowship from the Department of Homeland Security.
>Bravo Agatha, it’s a shame more comment-ers on this blog can’t conduct themself with your forthrightness and dignity; very few have the fortitude even to identify their name (consistent pseudonym or real).
I wonder if they have capacity to reflect realistically on how their behaviour scores in the ARSE test:
http://bobsutton.typepad.com/my_weblog/2007/02/the_button_for_.html