My blog was never about Judy Mikovits. It is about the hypothesis. That hypothesis is on the back shelf until this sordid mess plays itself out, which will now probably take years. Years of studying downstream effects, blinders on again, nobody looking for the source of the illness. Tragic.
Take a look at this, not a paper, a blurb on the bottom of a scientist’s webpage. She is probably afraid to publish amidst all the controversy. Who in their right mind would want to jump into this cesspool? With the fishbowl of vitriol that comprise many of the comments on this blog?
Identification of a novel retrovirus in Benign Prostatic Hyperplasia (BPH)
BPH describes a benign condition experienced by most men as they age, and is a result of increased proliferation (growth) of fibroblast and epithelial cells surrounding the urethra, which over time can form “nodules” and result in compression of the urethra and subsequently obstruction of urinary flow. Symptoms of BPH include urinary hesitancy, frequent urination, dysuria (painful urination), increased risk of urinary tract infections, and urinary retention. Treatment includes surgery and pharmacologic options, although the cause of BPH is unknown. Using tissue from patients who have undergone surgical treatment to alleviate BPH, we discovered that the affected tissue appears to have altered gene expression patterns when compared to normal prostate tissue. This is not unexpected, as the tissue is clearly growing more quickly. However we identified what appears to be increased expression of genes related to an antiviral response. Given the recent findings of a novel virus, XMRV, found in some prostate tumors, we analyzed the BPH affected tissue for viral infection. We found that the majority of tissue from symptomatic BPH patients contained low levels of a virus not previously found in humans. Sequencing confirmed that the virus consists of 2 variants, is not XMRV, and likely produces a protein that has been related to inflammation in other species. Interestingly, the exact virus sequence differs among patients, suggesting that upon infection of the tissue, the virus undergoes replication. Furthermore, sequencing revealed that the virus is likely transcriptionally regulated by androgens, which is consistent with the fact that cell growth in BPH is androgen-dependent and the classic non surgical treatment for BPH is inhibition of DHT (an androgen) production. Both variants of the virus have submitted to the USPTO as a provisional patent, as they may be a therapeutic target for this disease. In addition, we are currently seeking funding to assist in the development of a vaccine, which could potentially eradicate BPH if this novel virus causes the disease, or even if it is just expressed (as a “bystander”) in BPH-affected tissue.
Denise O’Keefe, PhD webpage UPMC
For everybody who has written that I need to admit that Judy fooled me, I still don’t feel fooled. I could be fooled by a psychopath, like anyone. I have been before. I had a lawyer once that fooled me completely. I have reported my impressions of a person I know well, who is passionate and caring and stands up for what she believes. No signs of psychopathy at all. I hope I am right. In the fishbowl we now find ourselves, I’m sure we’ll find out. Everything. It will be like a rape trial. Blame the victim is always a good strategy.
Here is the timeline, since people seem to be questioning what I did when. I read the paper on Oct 9, 2009. I wrote my angry email to the WPI on Oct 28. I was angry for a while, until I met Judy in January. I paid VIP Dx for 2 tests, for my daughter and myself, in early 2010. I couldn’t afford to test my husband or son. I sent specimens to the WPI on a regular basis when we started arv’s, but was never given any results. Some of our specimens were tested, but I don’t know what those results were. It was never reported to me. I was told that some of our specimens were improperly handled by a research fellow who was subsequently fired. I started working as a volunteer for the WPI in the fall of 2010. I started working as an independent contractor in Jan 2011. I worked there for 6 months, mostly from Santa Fe. I made 5 trips to Reno from 3 days to a week. I was fired in early July of this year.
Finding oneself in the position of a whistle blower is a miserable experience. By writing I hope that I have put the WPI on notice of what I would say in court if dragged in. They don’t need a subpoena to find out. They are behaving like thugs. Have they never heard of mediation? I am only sorry that I didn’t say it all sooner. I have mail from people who are angry at me, because they gave money recently. I held hope for a good outcome for longer than I should have. For that I am so sorry.
I also have mail telling me that I should be afraid for my physical safety. That I should ask for witness protection. Witness to what? I wasn’t there. That’s how completely crazy this has become. I would laugh it off, but I would never have believed what has already happened. It is all so beyond the pale. SNR Denton, very expensive patent lawyers, are monitoring my blog again in the last couple of days from Chicago and Kansas City, including the tech department. It is creepy beyond belief. And the money being spent on all this? Where did it come from? Imagine what the tab is by now!
I feel like I stepped in dog shit and will never get it off. Everyone involved has been brought down by it. I don’t know what to do, except keep telling the truth as I see it. As I said, I wish I had done it sooner, but I still held hope for a positive outcome somehow. I can’t believe that all of this is happening. A year ago it was all so hopeful. I am heartsick.
>"As ME/CFS sufferers, we need to refocus on looking ahead to where the future of research (and the future of care) is headed. I am sorry that Judy Mikovits and some others are probably feeling like roadkill along our highway, but as a community, we need to stop rubbernecking and move forward"
ME research is not being allowed to move forward because people are not clinically validating their assays. Science and ME no longer interact when this is permitted without question.
>"people are not clinically validating their assays."
Whoever you are, you wouldn't know a clinically validated assay if it walked up and kicked you in your assay! Please please move along!
>A clinically validated assay has been proven capable of detecting a clinical positive. The assays in Lombardi et al. were clinically validated. Without clinical validation an assay does not work.
>Jennifer said…
"I'm not RRM, but I agree that Osler's Web, while perhaps not "shitty", is/was a highly overrated book based on the flawed assumption that ME/CFS is caused by a retrovirus."
Well, that's one interpretation.
Funny, I thought it was based on what the CDC did and didn't do; what happened in Incline Village, Lyndonville, and other locales; how local doctors dealt with outbreaks; the problems encountered with treatment options such as Ampligen; and the NIH's Stephen Straus, among others.
And the idea that a retrovirus was involved, yes. Of course, since that idea has not been ruled out, it is curious that you would use the term 'flawed' to describe it.
Meanwhile, you said nothing about what David Tuller wrote, which Vincent Racaniello chose to host. It strikes me as somewhat similar in tone to Osler's Web, which is why I asked the question. That's the first time I've ever heard anyone describe this book as 'overrated,' so thank you for that.
Wow.
>anon November 27, 2011 10:15 AM posted this from a WI statement:
"The assays used in the BWG by Lombardi/Vipdx were not those from Lombardi et al."
My question is why wouldn't they have been? Wouldn't VIPdx have used the same assays as Lombardi et al?
>What do you mean by a "clinical positive?" The assays used by some of the labs in the BWG study were obviously able to detect positives, since they accurately detected some of the samples that were intentionally "positive," because they had been spiked with a contaminant.
Lombardi et al. used an assay that has since been shown to be unreliable in the extreme, not detecting intentional positives and producing many false negatives. It was only "clinically validated" in a sort of circular logic that you seem to be trapped within.
Your basic argument is that until Lombardi et al. is proven true, it hasn't been adequately tested. Sorry, but science doesn't work that way. A finding has to be reproducible to be accepted. Lombardi et al. has been shown to be erroneous multiple times now, including by Lombardi and Mikovits themselves.
I find very persuasive the argument of the recent poster, who pointed out that if a pathogen is right on the margin of detectability, it makes no sense that the researchers would find it in close to 100% of their sample. If detection were actually so tricky that only the magic wand of Judy Mikovits could do it at all, she still probably couldn't do it every time. In all likelihood, detection is not really all that difficult–no more so than for other similar pathogens–and the results have varied so wildly because some samples and groups of samples and/or labs are contaminated and others are not.
You are fetishizing this one study from one research lab. Of course we are all terribly disappointed, because it made so much sense and raised our hopes so high. But there comes a time to let it go….
>@11:40 You make some good points. Yes, it also covered the history of the recent outbreaks, the poor response, etc., but I agree with Jennifer…Osler's Web is an overrated and very flawed book in it's main premise, and conveniently avoids talking about people who recovered, with the exception of Erik whatzizname, who is recovered as long as he doesn't go near the "ick".
Why he doesn't just move to another part of the country is beyond me, but I guess he enjoys his new occupation/notoriety too much?
>Anonymous–I could be any one! said…
"Hi all! I've been participating in this blog for some time, and I am realizing that it probably isn't too good for my health!"
You're so right. That's why I find it so puzzling that others say emotions have nothing to do with healing and health. Clearly, they do. Even cancer patients know that.
Thanks for posting that timely comment.
>Stress exacerbates CFS symptoms. We can all testify to that. That includes intense emotions, even reading other people's strong reactions. Yup. The muscles tense and then muscle pain sets in and worsens.
And I appreciate Anon. 9:57 who talked about what it is like living with this disease, always with the sword of Damocles over our heads, always worried that we'll become dysfunctional if we do anything, at times not able to take a shower.
In regards to questions on other tests, see Chronic Fatigue Syndrome Advocate which has some posts on Dr. Enlander's Nov. 20 seminar, with comments underneath. You might be able to find out about Dr. Lipkin's responsibility by looking up Chronic Fatigue Initiative or Hutchins Family Fund. (They're funding his study and others, too.)
You can probably find other summaries of tests for biomarkers by: Dr. Anthony Komaroff at Harvard Medical School; Kathleen and Alan Light at U. of Utah; Drs. Malle and Fluge who are in Norway (Rituximab studies).
David Tuller's article, referenced above, explains some interesting points about CDC inaction.
It takes searching on the Internet.
I really wish I knew how other people with CFS improve, including how Andrea Whittemore has improved — anyone. I wish we could discuss this constructively. It might help us.
>Thanks for the suggestions, Kathy D. I appreciate it.
>@Curious
You are right on that one. It's in the comments section of Virology Blog "Ila Singh finds no XMRV in patients with chronic fatigue syndrome".
I would not call Tuller's piece a "shitty conspiracy story."
The reason is because I feel that Johnson leaves out inconvenient facts that don't support her suggested account of what happened, while Tuller (while perhaps biased) does not.
>I think, and so do others in the blogosphere that Tuller's piece makes a contribution on the history of the hassles with the federal government over recognizing CFS, funding and doing research on the disease — OR NOT.
It does lay out the CDC's inertia or worse on this disease.
>@Anonymous November 27, 2011 8:54 PM
"Mikovits does not run the WPI."
Correct.
"Lombardi at ViPDx did the BWG with those assays."
Wrong. Mikovits was present as WPI's representative at every public BWG meeting to discuss methodology/results, Lombardi was not. Mikovits and Pfost were also the WPI's authors on the BWG paper.
While the list of authors was (of course) shortened due to the nature of this study (involving seven labs), all of the papers' authors thanked their colleagues at the end of the paper in the acknowledgement section.
Lombardi was not even named in that part of the BWG paper!
Thus, the WPI's contributors to the BWG paper are Mikovits and Pfost (as "authors"), and Cassandra Puccinelli, Shanti Rawat, Amanda McKenzie, Kathyrn Hagen and Debbie Taylor Cramer (acknowledgement section).
…yet, according to you, Lombardi and his VipDx lab were solely responsible for the disastrous BWG results?
To quote you: "lol"!
"The blood working group was to see whether there was an assay that can protect the blood supply. There is no high throughput assay."
Again wrong.
The ultimate goal was the come up with a "high throughput" assay (it really always is the ultimate goal, isn't it?), but in the process of getting to this "high throughput assay", they of course needed true, bona fide, validated positives to work with.
In the process of finding these true, bona fide, validated positives, of course the best, top of the art, non-high throughput assays were employed.
Ruscetti opted to culture for approx. three weeks. That's not a "high throughput assay".
Think about this from common sense:
The BWG concluded there was no need for further investigation into the blood supply. They would have NEVER concluded this if they had just searched with fast, less sensitive methods.
Fact is that Lo, Ruscetti and Mikovits threw EVERYTHING THEY HAD at those samples.
>JDJ wrote: “What if I'm right [retrovirus hypothesis]? Why does no one want to consider it, even if Judy Mikovits' data is all wrong ?”
Moving forward with the discussion isn’t possible without getting to grips with the process of science on which definitive research progress would be based. The issue is not about what is or is not good or appropriate biochemistry, it is about how science can and can not progress.
In resonse to the question of “why not consider it “ : While it is quite true that no research to date has served to absolutely exclude a retroviral involvement in M.E/CFS illness causation, to be able to make scientific progress an hypothesis has to be ‘testable’, or in Popper’s terminology it must be ‘falsifiable’. The problem with the retrovirus hypothesis is that it invokes a pathogen of a given class without defining its specific character, and that pathogen is hypothesised to be causally linked to a condition defined by multiple symptoms none of which is unique to the condition either singularly or in combination. How, given these multiple variables is the ‘theory’ of retroviral involvement in M.E/CFS to be ‘falsified’ ? Without answering this question it is impossible to move forward to a more definitive consideration of ‘testability’. This was always the inherent problem with the WPI work – it wasn’t based on scientific logic, rather it was merely flailing around, albeit employing chemistry in the flailing. Of course such an approach could ‘hit the jackpot’ by chance, but given an unlimited number of candidate pathogens such an approach is just research by lottery.
The assertion “a retroviral hypothesis fits the pathophysiology of the disease like a glove …..” identifies the a priori thinking that has bedevilled the whole retroviral proposition. By what measure does “a retroviral hypothesis fit” the “pathophysiology of the disease” ? We have no epidemiological level description of the pathophysiology of M.E/CFS to which anything could ‘fit’. We do however have a fairly well attested and generally accepted apprehension that M.E/CFS affects females in much higher proportion than males – to date no known pathogen is infectious of one gender in disproportion to the other. Certainly epidemiological presentations can, within limited populations, identify gender disproportionate infection based on behavioural and environmental exposure. Of course one can add additional hypotheses to explain why a pathogen might produce gender differences in disease expression, but we then come back to the issues of falsifiability and testability. This hypothesis ‘stacking’ produces ‘unfalsifability’ because each hypothesis becomes reliant on another creating a circularity which is unbreakable. At this point, given the paucity of available knowledge, the retrovirus hypothesis has all the appearance of being unfalsifiable and untestable, this doesn’t mean that it will always be so, but until there is far more detailed work in areas such as the epidemiology of M.E/CFS, ‘pathogen’ studies will remain speculative and (without a lucky strike) largely unrewarding.
>"MLV's or MuLV's insert in places in the host DNA called CpG islands, start transcription sites, where they activate genes, presumably to create favorable conditions for them."
While this may be true, this is an EXTREMELY rare event. Specifically, its a rare event to target a transcription start site. Moreover, its even more rare to target a gene that causes leukemia in mice, such as src, myc, etc…
"Once endogenous, a retrovirus can be fully replicative or not. If not, it may still be able to generate viral proteins if activated,"
The key question is activated. most endogenous retroviruses (ERVs) are inactive and produce proteins from ORFs that are defunct. Those viral proteins are degraded through normal cellular machinery and never see the light of day. I want to be clear – the actual amount of retroviral protein produced in the human body is very, VERY small.
"They become endogenous when transmitted vertically."
They do but do you know what it takes for this to happen? For an ERV to be transmitted? The virus will need to infect reproductive cells of either mother or father and even more rare event.
"It may be measurable in the form of antibodies and sometimes antibodies are generated in response to self, producing the low level autoimmunity seen so commonly in this patient group."
The amount of antibody production produced from ERVs or retroviral infection (specifically MLVs, not HIV is NOT the same as Abs produced from CFS patients. You are comparing apples to oranges.
" Persistent immune activation due to foreign viral product fueling inflammation. This happens in HIV disease."
Simply does not happen the same way when you are talking about a gamma retrovirus. Gamma retroviruses (especially XMLVs) do not produce a large immune reaction. Everyone in the retrovirus field knows that MLVs are literally silent to innate antiviral immunity and are kept in check by other antiviral factors such as TRIM5, APOBEC, etc… Silverman's paper showing the lackluster immune response from XMRV demonstrates this (which is a real virus despite being made in a prostate cell). The fact that Abbott labs couldn't do a high throughput screen for antigens from XMRV (with HIV being the control) that illicit a strong immune response is another line of real evidence.
"3. Gene activation. In addition to making viral proteins or particles, simple animal retroviruses turn on genes, which may be clinically important, depending upon the functional integrity of the gene in question. Certain genetic disorders, such as Marfan's and Ehlers Danlos, and certain autoimmune disorders, such as Hashimoto's thyroiditis and Sjogren's, are certainly over-expressed in the patient group. Methylation is necessary for proviral latency and it is clear that many of us have genetic methylation defects. However, it's not as simple as methylating, as it isn't desirable to induce latency in tumor suppressor genes."
This doesn't even make sense.
"Well, Anon 8:02 PM. I've been writing about it for a year and a half, but here it is in a nutshell:
http://treatingxmrv.blogspot.com/2011/08/keeping-it-simple.html"
Like I said before JDJ. Show me SERIOUS and VALID reasons why you think a retroviral hypothesis fits. Because in mind it really doesn't fit. Not even close. CFS is nowhere comparable to the pathophysiology of diseases causes by HIV or HTLV. That post lends nothing to linking retroviruses and CFS. You are making pure conjecture, which is fine, but at some point conjecture needs to lead to real proof. Researchers around the world have been looking and haven't linked retroviruses and CFS.
You may have some blinders on and might need to start thinking outside the box, because right now that is very empty.
>Why the hypothesis that CFS is related to a retrovirus? How does that arise? Why would one look for one if one is researching a viral cause?
I have read some articles about Rituximab which apparently works to suppress dysfunctional B cells, that again bring up the possibility of Epstein Barr virus being a causative factor.
This came up years ago and was overruled, I believe. Now it's being looked at again.
Does anyone have information on this? Or know if this is a possibility?
I only ask questions here, no statements.
>RRM, Mikovits did not do Phase III of the blood working group. Throw yourself on the floor, kick and scream all you like, it still didn't happen. The failure to have bona fide controls (failure to check PBMCs) and 22rv1 tested in the CDC lab with some collection tubes invalidates the paper. Culturing and serology are included to demonstrate the unreliability of PCR consistent with gamma retroviruses seaping into blood producing a very low titre. Searching tissue is the only reliable way to proceed.
Lombardi et al. used a clinically validated assay and bolstered this with further assays to produce bona fide positives.
>Had I known how notorious the Whittemore family were in Nevada I may have had second thoughts about donating my money to them.
After reading HWs wikipedia page I certainly would not have donated one penny. I noticed he has has the worst elements edited out into the history section.
The thing is now the Whittemore family are not only notorious in Nevada, their name is now scum all over the world. I personally think Annette has such an ego and is so controlling she believed she could run the whole show. How wrong was she? It has been one disaster following another.
I really don't know what they hoped to achieve by their actions in firing all their best employees but I am certain it has backfired on them.
Please people, stop defending Andrea, she is a fully grown married woman not some sick little child. She has intimidated patients who gave her family money, what does that say about her?
I know of many sick little children who now have lost the hope they were given by DrMikovits.
Grow up all you JDJ detractors. Jamie is doing a marvellous job keeping us informed. If you don't like it, go somewhere else.
>Anonymous 7:15 a.m., you sound like a serious bully.
>Kathy d, if I were you, I'd spend more time doing research about your disease in places other than this blog. You have some serious learning to do. Spending your days and nights here as your primary resource is a waste.
>@Anonymous November 28, 2011 6:58 AM
"RRM, Mikovits did not do Phase III of the blood working group. Throw yourself on the floor, kick and scream all you like, it still didn't happen."
Err…I provided serveral sources in support of my position, from the total absence of Dr. Lombardi/VipDx in the BWG paper and presentations, to the fact that methods were used in Phase III (straight PCR) that are not even performed by the VipDx lab.
Yeah, I am totally kicking and screaming…
You, on the other hand, have provided exactly nothing in support of your position, except your repeated statements to the effect that I am wrong.
Thus, it is you who is virtually screaming and kicking all you like (I can't see if you're throwing yourself to the floor), without making the fairy tale you wish to be true, to be true.
"The failure to have bona fide controls…"
Wrong…
Mikovits could freely choose her own methods. You can verify that by her assertion that she employed the VipDx lab for retesting, without that being part of the BWG study design or without it being mentioned in the paper, BTW. She could have opted to use her own internal "validated" controls and I sure hope she did.
You are basically insulting Mikovits by saying that she chose to exactly do nothing like the brilliant original study while she was free to choose her own methodology.
Fact is that Mikovits tried everything within her power to confirm her earlier findings and just didn't succeed. And although to me that is convincing evidence that the original paper was wrong, I sincerely hope that Lipkin will at least leave one set of samples frozen in storage, until Mikovits/Ruscetti give him a call and say "we are ready, send us some samples and we will convincingly discriminate between patients and controls" and they will get another shot.
BTW: What's the story with Ruscetti's lab? Did Lombardi and his VipDx lab also perform Ruscetti's serology and viral culture experiments?
"22rv1 tested in the CDC lab with some collection tubes invalidates the paper"
No, it does not. Like I explained, it should never obscure the serology results (by Mikovits's own admission) and the chances of 22Rv1 "just" turning up in the Ruscetti and WPI labs and not in the other labs (that have shown they are just as good or better than WPI at detecting 22Rv1) are astronomically low. We are talking about 1/googolplex kinda numbers…
"Culturing and serology are included to demonstrate the unreliability of PCR"
Source for this statement? Please don't simpply say "Mikovits" or "Simmons" without providing an actual, *verifiable* source.
Although the onus is really on you, I'll go ahead and give you a verifiable source for why you are wrong. Page 7 of the BWG Transfusion paper tell us that serological assays were included to (inter alia) determine the "initial indication of sensitivity and specificity of serologic assays", i.e. they were included on their own merit and not just to provide a check on the PCR.
"Searching tissue is the only reliable way to proceed"
Mmm…so you agree that the finding of 67% of 101 patients to be infected with HGRV's, later updated to 98%, as well as the finding of 100% (!) of 118 Lake Tahoe patients to be positive for HGRV's, this ALL due to searching in blood, to be…
…false?
If not, shouldn't these blood results be reproducible? You think the finding of something in blood is *correct* but when it cannot be repeated, it's time to search somewhere else? Somebody please pinch me…
"Lombardi et al. used a clinically validated assay and bolstered this with further assays to produce bona fide positives."
Here we go again. Please don't hurt your nose on the way down.
>to Anon November 28, 2011 4:00 AM
I don't know who you are, but why are you trying so hard to disprove the retroviral cause of CFS/ME ? Personally, I didn't see any papers describing what happens when a retrovirus infects a human, when he already has EBV, CMV, and possibly many, many others. A retrovirologist once told me that viruses co-operate. What's the result of this co-operation ? I acquired CFS/ME sexually, the timeline of symptoms are horribly identical described in the literature to that of HIV. Though, HIV is ruled out. Also HTLV is ruled out, yet I'm sure I'm infected with a retrovirus.
But again, why trying so hard to disprove the retroviral cause ?
>"Personally, I didn't see any papers describing what happens when a retrovirus infects a human,"
I guess you glossed over the million HIV papers eh? Or perhaps the other million papers that use retroviral vectors to study other human diseases?
"I acquired CFS/ME sexually, the timeline of symptoms are horribly identical described in the literature to that of HIV. Though, HIV is ruled out. Also HTLV is ruled out, yet I'm sure I'm infected with a retrovirus."
Really? AIDS progression is identical to CFS progression? REALLY? Also, please elaborate as to why you are *SURE* you are infected with a retrovirus.
"But again, why trying so hard to disprove the retroviral cause ?"
It has yet to be proven. A hypothesis can be disproved if there was proof to begin with. A retroviral "cause" hasn't even got to that step yet. Personally, I don't think it ever will.
>"I acquired CFS/ME sexually." "I'm sure I'm infected with a retrovirus."
And I know that little green men came from Mars and gave me an IV full of Martian blood, which gave me my CFS/ME. Absolutely certain.
>Your certainly sick, but I think it may be a psychiatrist your in need of Anon 8.14
>"Your certainly sick, but I think it may be a psychiatrist your in need of Anon 8.14"
Well I think his point was well made.
>Anon @ 7.33 "you sound like a serious bully".
Oh yes, from my bed, on my laptop doing ten minute stints. That's me a serious bully. Not like what you hear? Bit close for comfort is it?
>Anonymous at 8:25,
Actually it isn't close for comfort at all. Nothing you said affects my world; I just thought that your tone in that post, as in this, is one of hostility and aggression. You sound like you are trying to get right up in someone's face to intimidate them. I am, like you, a bed-bound patient. I don't have a "dog in the race," to use JDJ's term. I understand being angry about the disease, but I don't understand becoming hostile and bullying as a constructive response.
>Anon 8.21:
A bit of a literalist, are we? Dog ate your sense of humor?
>Maybe you have more money to spare than I do. When you have spent your money on what you hoped was a chance of some treatment and find your money has been misappropriated, and not in fact spent on that research you tend to become quite angry.
My family has gone without to try and help me find some form of recovery.
Are the WPI going to refund patients money? So yes to say I am angry is right, angry with the people who to my mind stole my money, who were supposed to help me get better but find only the chosen few were helped.
But to say I am trying to get right up to someones face to intimidate them is totally incorrect. I know how that feels. Not nice, especially when it comes directly from the people you sent money to.
Angry? Yes very angry.
"Dog in the race".I would seriously doubt you had no dog in this race. Why are you here?
>When I say I have no dog in this race, I just mean that I don't have any love for or loyalty to or financial interest in any of the parties to the dispute (WPI, Judy, Whittemores, anyone else). And I didn't give any of them my money, partly because I don't have much to spare, and partly because I thought it wise to wait and see how the further research came out. I am hugely relieved for myself that I wasn't tested, because I would probably be quite angry about it too. And I'm glad I didn't donate much money to the WPI (like most of us, I gave some). Sorry you feel so taken advantage of. I hope you get your money back. I think they owe it.
>I realize I seemed to contradict myself above. I didn't give the WPI money for a test. I did give a small donation, but that's nothing compared with the cost of the tests.
>@ Anon November 28, 2011 8:13 AM
If you were not so biased and full of anger, you certainly would have read my statement " Personally, I didn't see any papers describing what happens when a retrovirus infects a human, when he already has EBV, CMV, and possibly many, many others." correctly.
>That's interesting RRM. You are being investigated for how you posted raw Lombardi data on the web but you claim to know what assays are used at ViPDx when they won't now reveal what assays are used there. Which famous anti-science reteovirologist have you been talking with?
>@ viraljeans
You still didn't answer my question though. And neither did JDJ for that matter.
"I acquired CFS/ME sexually, the timeline of symptoms are horribly identical described in the literature to that of HIV. Though, HIV is ruled out. Also HTLV is ruled out, yet I'm sure I'm infected with a retrovirus."
All I'm asking is why you think your infected with a retrovirus… Do you have any proof?
>Jamie,
Thank you for this discussion. It is the single best and most useful discussion we are having anywhere on the www just now. The fact that people can post anonymously without having to then "live with", even virtually, their friends who hold dissenting opinion allows for a really useful, if heated, debate. We really needed to air some old issues and grievances. To those who say it is damaging to their health, don't read it. It is important, just close the window and don't read it.
Many of us recognize who is speaking despite the cloak of anonymity. We know the style and the way they phrase things. I feel a bit like the Romper Room lady when I say: I see Abbie and Patricia and V99 (again and again and again) and… well, the gang's all here but the gang can speak freely and that's a very good thing.
Thank you.
Also Anonymous
>Jamie, please switch back to treatment blogs ASAP. Have mercy on us poor patients.
>Anon: November 28, 2011 9:15 AM: “ When you have spent your money on what you hoped was a chance of some treatment and find your money has been misappropriated, and not in fact spent on that research you tend to become quite angry.”
Where has ‘misappropriation’ occurred ? As long as the WPI did not raise funds on the basis of specific research projects being supported by particular donations, then it was free to commit funds as defined by its general purpose as stated to the IRS. Federal funds are subject to strict accountancy rules, is there evidence of misappropriation in that context ? Or are you referring to the VIPdx tests ? Redlabs/VIPdx was, and still is according to the Nevada Secretary of State http://nvsos.gov/sosentitysearch/CorpDetails.aspx?lx8nvq=3HqeF%252fFCg2b8fQKoGUKjpg%253d%253d&nt7=0 a private business.
Certainly the relationship between Redlabs/VIPdx and the WPI is a rather more close than one might hope where conflicts of interest might be thought to arise, however monies paid to Redlabs/VIPdx can not be considered to have been funds due to a non profit entity, they were clearly payments for services. Whether those services were provided in terms of the contract offered is a separate issue but the key principle involved, particularly when purchasing goods or services outside of a jurisdiction where recompense can be enforced for failures under the contract, is ‘caveat emptor’. I can’t comment on the US situation, in the UK however where I gather some people purchased the test via a UK company, in that case if the test is now shown ‘not fit for purpose’ then grounds for settlement under the sale of goods act may very well exist. There is also the question of physician liability, VIPdx is adamant that tests were physician ordered – it is the responsibility of UK doctors to ensure that any test on which a diagnosis is based, should be of appropriate quality. Any UK doctor not acting within that stricture would be answerable to the GMC and patients potential have a case for recompense.
It may be no comfort now, but there were siren voices from as far back as mid 2010, warning that the XMRV test was not something to be trusted and could not have diagnostic value. If patients were purchasing the VIPdx test for research purposes – what was the stated ‘research’ and who was responsible for taking the private information provided to a private company on the basis of contract for provision of services, and applying that information to a research purpose ? If this is the practice being alluded to then a breach of ethics as applied to medical research in the US would seem to have occurred.
>Gerwyn etc.
RRM is "under investigation" now? Is this a fact, like all your other facts than you never provide sources for (all the stuff about the BWG for eg.)?
You just make stuff up, and say it over and over again, waiting for people to believe it's true cos they've read it so many times.
What's your motive? Seriously, i used to think you were just arrogant and not as smart as you thought you were. Now i think this is deliberate. Gerwyn etc. what are you trying to achieve?
>If anyone is confused about the BWG findings (cos Gerwyn keeps trying to confuse you with misinformation), PR has a calm, careful analysis of the experiment and findings. It's on the front page.
>This is the best single discussion regarding the issues which have bedevilled us over the past two years. The fact that people may engage anonymously facilitates this lively and intelligent discussion. As a long time patient, I think you Jamie for providing a platform and a paradigm for this debate. It is long overdue!
>I meant to say: I THANK you, Jamie.
>"Anonymous said…
That's interesting RRM. You are being investigated for how you posted raw Lombardi data on the web but you claim to know what assays are used at ViPDx when they won't now reveal what assays are used there. Which famous anti-science reteovirologist have you been talking with?
November 28, 2011 10:09 AM"
Dear God, get a grip! You are the only person in the world who does not understand this. Well, maybe you and one other. But, for God's sake, please try to follow the plot!
>"Anonymous said…
Jamie, please switch back to treatment blogs ASAP. Have mercy on us poor patients.
November 28, 2011 10:40 AM"
Stop reading. This is important stuff. If it stresses you out, stop reading. ME does not cause one to read when one knows one cannot handle it. Just stop reading and let the rest of us get on with it.
>@Stella 11:20
What or where is this "PR" site that has a calm analysis of the Blood Working Group study?
>"There is also the question of physician liability, VIPdx is adamant that tests were physician ordered – it is the responsibility of UK doctors to ensure that any test on which a diagnosis is based, should be of appropriate quality. Any UK doctor not acting within that stricture would be answerable to the GMC and patients potential have a case for recompense. "
I don't know. These poor doctors were besieged by desperate patients to order these tests. I think the UK could benefit just a little from the US system where the patient takes some small degree of responsiblility for their choices. The physicians signed a test form; they did not prescribe or make treatment decisions based on the results.
>PR = "Phoenix Rising". Google will take you there if you search for that term.
>RRM is not being investigated by anybody. That's ridiculous and so is lying about it. Obvious fail.
>Anon: November 28, 2011 12:17 PM: “These poor doctors were besieged by desperate patients to order these tests. I think the UK could benefit just a little from the US system where the patient takes some small degree of responsiblility for their choices. The physicians signed a test form; they did not prescribe or make treatment decisions based on the results.”
Where does “besieging” come into it ? Just because a patient asks a doctor for something doesn’t mean the doctor is obliged to provide it, indeed in the case of UK doctors, they are clearly under an obligation to a) consider whether what is being asked for will benefit the patient, and b) use their professional judgement to fully assess whether any test meets with the standard required under the governance of UK medical practice. Given that it seems improbable that any NHS GP would, as part of their NHS practice, request an XMRV test, then any UK doctor requesting the VIPdx test was almost certainly doing so on per fee basis and would therefore have been profiting from offering inadequate advice if they had not ascertained the validity of the test. There is no way to know what any particular doctor has or has not prescribed or what treatment decisions have been based on the VIPdx tests. Is it a realistic proposition that an MD signs off on a test that with the various on-costs may be setting the patient back the equivalent of US$1,000 , only to tell the patient once the results are in that ‘positive’ test is meaningless and no there is no treatment, no need to be concerned and don’t worry about it ? The reality is that desperate and ill informed M.E/CFS affected people have been exploited at multiple levels, insisting that such people take responsibility for their choices when they’ve sucked in by hype, misrepresentation, a lack diligence, and in some cases lack of professional integrity is to miss the point of what actually has occurred. Sadly I doubt we will see any UK doctor hauled before the GMC for failures in respect of the VIPdx tests but that does not mean there are not those who are culpable. Like many abusers in other circumstances, they will be protected by their victims out of a sense of misguided loyalty and gratitude.
>I'm right!
No, I'm right!
No you aren't, I'm right, you're ANTI-SCIENCE?
Say's who?
Say's Gerwyn/V99!
Oh, tell it to Cort!
You mean Cort, who works for the CAA?
He doesn't w…
He's been against us the whole time, it's a conspiracy!
Well, I'm right! You're full of sh —
Jamie, will you tell Patricia to stop bullying me!
But no one has reproduced the original —
Get a grip!
No, I'm right!
You're wrong, and I have to have the last word!
But —