Mood music for this post: Messages by Xavier Rudd
So much contentiousness from people who are essentially on the same side! Let’s assume the worst case for the moment, that RRM is right. XMRV doesn’t pan out for the Blood Working Group or Lipkin. Where does that leave us? Where does that leave RRM, who has an affected loved one? Anyone arguing their points here is personally invested. So, hypothetically, XMRV is dead, a lab contaminant, and not as good at infecting live humans as it is at infecting human cells in tissue culture, so not a direct threat. Then what? Does it get put to bed again? That’s already happened a few times in the last 40 years. We still have millions of sick people for whom a retroviral etiology makes more sense than anything else. As a clinician, it is the best we’ve ever had as a model to develop an approach to treatment. Quite a lot is known about what similar viruses do in animals. Why don’t they spend the money to do the definitive deep sequencing we need rather than a couple of million dollars, and a bunch more time, to see whether a few scientists can do the same thing reproducibly? What if they don’t? While new babies are born with it and new people go down with it.
Andrew Mason’s excellent work is an important signpost. It suggests the likelihood of human infection with more than one family of retroviruses. If it’s true that retroviruses have been introduced through vaccines, then it would be expected to encompass more than murine retroviruses, as the cells used come from different phylogenetic orders. This is the frontier of future medicine. It changes the playing field. Or should. Once allowed into mainstream thought it will inform not only every facet of healthcare, but will illuminate genomics and evolutionary theory.
With passage of time, it becomes increasingly apparent how naive I was when all this began with respect to the pace of science. Max Planck said, “Science progresses one funeral at a time.” I am coming to terms with the fact that the glacial pace of progress means it will probably be too late for me and many others. For now, the best I can do as a clinician is to keep my patients as comfortable as possible while they are under siege, until the cavalry finally appears over the hill. It’s been a long time coming.
The model I’ve written about for the last year and a half, and outlined in the last post, is the most workable we’ve had for an explanation and approach to the neuroimmune illnesses, now rampant in some of our families. Many talented people have identified pieces of the puzzle over the years, measuring downstream effects of particular tributaries, each adding to the rushing river of illness. The fact that it isn’t one virus fits well with the clinical diversity, though I still maintain that, with respect to the chronic fatiguing illnesses, the various syndromes tend to converge over time into a rather clinically homogenous whole. Different paths to a similar place.
>The vested interest are very dierse. Many patients don't want to face having a retrovirus, and governments don't want to face another HIV. THerefore sweeping everything under the carpet and calling it "complex somatic disorders" for a few more years will allow laws to be changed so patients can't sue for dammage and interest.
Do I disgress?
Personally, I am still waiting for my own governent to listen, to research, to be open to possibilities, perhaps even to welcome the challenge of new research that culd help millions and to offer health care for diseaes that have not been respected. In my country (Canada) health care is a human rights and mine are being violated.
>So true.
It is becoming increasingly apparent – the much anticipated "solution" is not just around the corner and "the puzzle" will most probably not be solved in my life time. But we are inching closer.
I have accepted that i have to live with this disease and I will most probably die from it too. As ridiculous as it sounds accepting that is somehow giving me some peace of mind.
I am no longer trying to reach for the stars but try to reach for the possible.
I worry less…..
But I still worry for our children
and for our children we must continue to fight….
>Thank you Jamie.
You have encapsulated my thoughts over the last few months. I was hopeful that this retrovirus would not follow the path of HIV, which left a community disillusioned by the scientific establishments shocking ability to turn a tragedy into a political rumble. The "butchers bill" is totting up whilst a powerful few once again re-write scientific fundamentals in order to claim a few bucks. If it were not for the majority of the patient population and the compassion they show to one another I would have no faith in humans.
>All family members of XMRV positive patients are testing high on nagalase, which can only be explained by viruses at this point. There are two possible explanations in my opinion: the family members all have some chronic herpetic viral infection or they have a retrovirus. The chronic herpetic viral infection doesn't make sense because they're healthy and whatever herpetic viral infections they have would be latent. It is already well-established that most healthy people that have herpetic infections, so if herpetic infections in healthy folks were causing high nagalase, pretty much everyone's nagalase would be high and there would've been no statistically significant difference between HIV-pos and controls. Hence, a retrovirus with a far lower incidence in the human population than herpetic viruses better fits the finding that the family members have high nagalase much.
Kenny De Meirleir says that HIV doesn't develop into full-blown AIDS until the intestinal barrier is ruptured, and the same model applies to ME/CFS. So that could explain why all our family members are walking around with XMRV yet still appear healthy on the outside.
>oh dear you sound very worried ??
Sounds like you might have had the data from the XMRV blood working group then??
from how your sounding its not good news then?
I guess we should all be prepared then, thats for warning us.
>No this is data from a prominent ME/CFS physician
>yeah but i should think dr deckoff jones would be able to find out the results from the blood working group and shes sounds quite down beat about the xmrv blood working group results?
Rob.
>Joey…Doctor Deckoff Jones said, "Let's assume the worst case for the moment, that RRM is right. XMRV doesn't pan out for the Blood Working Group or Lipkin. Where does that leave us?"
Why would she mention the xmrv blood working group results in such a negative way, unless she new something? it doesn't sound like good news to me.
Rob.
>"Why don't they spend the money to do the definitive deep sequencing we need rather than a couple of million dollars, and a bunch more time, to see whether a few scientists can do the same thing reproducibly? What if they don't?"
It's simple, if the WPI and FDA labs are unable to reproduce their results, then that is proof that they were the result of contamination and we will all have to accept it, rather than irresponsibly fueling wild conspiracy theories. They help nobody and only serve to damage our cause and the image of ME/CFS patients as a group.
Let science run it's course and accept the answers, even if you don't like them. A good scientist will never hold fixed beliefs, but adapt them, based on the evidence. Blind faith is the reserve of religion, not science.
>No Anon, that would be an absence of evidence, not proof of anything.
You would actually need scientific evidence of contamination. Either they should put up or shut up and get on with clinical trials.
Replication studies and deep sequencing are what IS required. Not political studies for the politicians and rediscovers of already discovered polytropic and modified polytropic variants.
>There is one possible bad outcome for the BWG results – if they are ambiguous. Clear results either for or against the XMRV-ME hypothesis are a good thing, particularly if the Lipkin study supports the same conclusions.
Ambiguous results, that are not clear either way, will support instead the notion that our understanding is so poor that we cannot even properly design a study. This should just beg for further research.
The XMRV-ME association hypothesis has to be pursued until we have clear answers, it is too important. I do not worry about contamination claims, I worry about clear evidence.
There are indeed strong reasons to suspect viral involvement in ME, and especially retroviruses. I support the WPI in their search, and I respect those who have taken the step to trial anti-retroviral therapies.
If the association hypothesis is demonstrated to be probably wrong the WPI can advance its agenda to focus on other things, a win. If the association hypothesis is demonstrated to be probably correct we have reason to pursue even more forceful advocacy in support of the XMRV-causation hypothesis, and human MLV infections in general. Either way its a win. Only unclear results are a problem – although "clear" but opposite results from the BWG and Lipkin will indeed produce a storm of comments. Alex Young aka alex3619
>well ive never heard Dr Deckoff Jones sounding this down about things, whether its Blood working group or something else – im starting to wonder if this whole xmrv thing is going to work out.
Sue UK M.E for 20 years
>alex3619 , i remember hearing from a scientist about 6 months ago who said to me, No BWG the Blood group results will not be un clear the researcher told me, because they were going to find out *why* things are un clear before they tell the public, otherwise we will just keep going round in circles and never get anywhere.
BWG are working for us.
>I hope the BWG will indeed find out why results are ambiguous if this happens, but it is possible they will fail.
I am not worried about the tone of the blog, I myself have posed negative questions to explore outcomes, only to show it is not doom and gloom in some worst case scenarios. I wonder if Dr. Deckoff-Jones will produce a best case scenario next? alex3619
>The BWG is as political as anything else that pertains to XMRV/MRVs. None of the other labs are replicating the WPI's protocols, which one would think would have been a focus of any collaborative effort. Until they do, it should surprise no one if the labs that haven't previously found evidence of human gammaretrovirus infection remain unable to do so. (Incidentally, the CDC DID find XMRV and related viruses in one phase of the BWG but then inexplicably stopped using those novel assays!)
>I don't expect the BWG to be a fair scientific study. What I do expect is that this virus is there are others want to rediscover it.
>Hi
I totally agree with all of the above comments, I've never heard Dr DJ sound like this!
"it will probably be too late for me and many others"
I'm thinking the same… Blood-WG results were not good news. Prepare your self ladies and gents.
>It is very much like 1983, unfortunately the same competition is on for who owns this virus. Really it is unnecessary for the patients and there is no honor in it.
>Jame, So We don't all worry. Are you able to tell us, have the findings of the BWG been talked about? and do you know of the results?
Blessings Ann
>More than enough doubt has been cast on the WPI's work. The ball is in their court to prove the association under properly controlled conditions. If they are right, that should not be a problem. If they are wrong, they should hold their hands up and try to track down the source of contamination, seeking outside assistance if required.
>There is no proof that there are any problems with the WPI's work so they have nothing to prove.
Analysis of the contamination hypothesis shows that this is cobbled together by theories.
There is no proof that contamination is in any way related to the WPI's original Science appear.
If other rival researchers continue to use contamination as a way of explaining away the WPI's results they will have to come up with something more convincing and plausible than trees of mathematical data projections and a few samples that were no where near the WPI.
We are sick not stupid. Patients are quite capable of reading the paper and examining the data.
So far the contamination theories don't add up.
>The ball is in the court of those who are choosing to not replicate. It is they who have abandoned the scientific method. If all these labs are right, the virus is there when you use those exact same methods on CCC patients. I would go so far as to say they already know and disgusting.
>If the virus is there when using the WPI's exact methods, then the WPI will have no problem finding it in the BWG and Lipkin studies. The BWG are even using patients who the WPI have previously tested positive. There will be no excuses if they can't.
>This post was not a reflection of my knowing the outcome of the BWG study. It was written from a place of sadness that practicing medicine almost two years out from the Science paper is a very lonely process. I know the illness, even think I know what's going on from a pathophysiological perspective, but I'm alone on the moon. It's a vacuum. Nothing happening on the treatment front at all. Dr. Mason found his retrovirus 8 years ago and even though everybody believes his patients are sick, it hasn't generated much excitement. The pace of science to help us is going to be very slow. I have always tried to write about the reasons to feel hopeful, but I'm not feeling it at the moment.
Jamie
>A robust HIV assay would not be able to identify positives if there is a mistake before the panels are distribute or after they are returned. And the same goes for testing people without ME. The Lipkin study is already known to be using a mixed cohort due to the clinicians being used, i.e. not the same people identified as having HGRVs.
What we need is scientific explanations for any results, not guessing.
>Thank you for sharing Jamie. As a UK patient who is extremely unwell and suffers from ME/CFS as well as an overlap between Primary Biliary Cirrois and Primary Sclerosing Cholangitis which is where Andy Mason found his retrovirus – I am more than anxious about the outcome of all of this. Researchers in Cape Town told me that the retrovirus theory has been around for years and nobody is currently working on it and this is in a disease that is not ME/CFS.
As the UK is doing diddly squat about XMRV I look to America with anticipation and trepidation until then it's a tooth and nail fight against the somatisation theorists.
>Hate to tell you this, but you can bet Stoye and the MRC are doing research into HGRVs and not telling anyone. They want this virus, but they don't want the WPI.
>There has not yet been a single properly controlled study that has shown an association between ME/CFS and XMRV and/or related MLVs. The controls used in the WPI and NIH/FDA studies were not real controls, as the samples were taken at different times, using different apparatus, methods and storage procedures. That means there is currently no credible evidence to support a link between XMRV/MLVs and ME/CFS.
The Lipkin & BWG studies provide an opportunity for an association to be shown. If it is not, then until another properly controlled study shows an association, it must be assumed that there isn't one.
That doesn't take anything away from the vast amount of evidence showing that ME/CFS is an organic neuro-immune disease. The money and effort should go on researching the most promising lines of investigation. A lot of money has already been spent researching the possibility of a link between ME/CFS & XMRV/MLVs and the weight of evidence suggests there is no link and that XMRV is a lab contaminating virus and contamination of samples and equipment with mouse DNA is widespread and the likely cause of prior positive results. The WPI and FDA labs are being given the opportunity to prove otherwise and it is in their hands. As good scientists, I am sure that they are only interested in getting to the truth, even if it undermines their previous work.
I am a UK ME/CFS patient, who tested positive for XMRV with VIPdx and negative when retested by Imperial College London, using multiple methods. Who is right, I don't know. I am only interested in getting to the truth.
>I think everyone hopes the BWG results will prove its not contamination once and for all.
and then hopefully help will come Jamie.
>I can see why it may seem lonely some days. However, look around. You are not alone and have hundreds of supporters who believe in you and the other scientists we trust to do the right thing.
You know, and anybody who understands the science knows it is a real HGRV. You have proven it, it has been verified by other legitimate scientists.
Just don't forget the other groups of heroic scientists that have walked this path in the decades before you. Just like the other scientists has tried to show, HGRV's are real and make people sick.
The bad actors have proven they are not a very helpful bunch to say the least!
With 50% of the population reporting chronic illnesses in countries around the world, hopefully some influential people will wake up and put political pressure on those to finally do the right thing and acknowledge this mess.
HGRV's are real, and the people who really matter know it. They're scientists who understand the science and political history.
Hopefully the political outcome is different this time. Certainly God knows, millions of lives could be saved and changed.
For those on the wrong side of history, karma will be a real bummer!
Thanks Jamie. You have much support.
>Is there anything that can be done about a person who says they are an editor of the Journal of Virology and is right now manipulating people on mecfsforums?
Do these people have no shame?
>At best, they do not feel shame until they are caught.
IMO they aren't the ones to convince; bystander scientists are.
(And the newer denialists who do not yet realize that their best option is to cut their losses.)
>Anon, do you have any evidence that this person is not who they say they are? Personally, I welcome input from retrovirologists and virologists who actually understand the science. There are so many with no background or education in virology arrogantly spouting pseudoscience, claiming to know better than some of the world's most experienced and respected experts in the field.
There is no conspiracy. Science is just taking it's natural course and if that course ends up in a different destination than we'd hoped, as is looking likely, then so be it. That's not to say we can't hope for a last minute change of direction, but we shouldn't hold our breath.
>Ed, you are completely naive.
There is no such thing as the "altruistic science". Science studies are made by people with interests. People who claim to "let science run its course" without even looking into possibilities in why this could lead to incorrect outcomes are being either naive or a pseudoskeptic.
>I always can tell when somebody has a contaminationist viewpoint when they start posting about conspiracies right away.
Kind of like GOP talking points. The contaminationists are all on the same page with their conspiracy talking points.
Make a valid argument on why you have been stifling research for decades, or continually publishing loads of psychobabble out of the CDC/MRC for a known biological illness? Otherwise, people will keep wanting valid answers, and not so conspiracy talking points.
>@Ed
You only think people have no experience. The point is what is a real person from the Journal of Virology doing on a patient forum not using their real name.
There are lots of people who have never discovered a human retrovirus that is very similar to HGRVs spouting pseudoscience at Frank Ruscetti, who actually has discovered a human retrovirus. Coffin hasn't, McClure hasn't, Towers hasn't, Stoye hasn't.
A similar thing happened with HIV, so to say conspiracies don't happen is an empty promise. If that were true they would replicate or use validated assays.
>I just want some treatment for my retrovirus. Almost my whole family in my generation is sick. At least I want the next generation spared from these illnesses. Well let's see a gammaretrovirus that has the potential to cause neuroimmune illnesses and cancer. It appears to me that HGRV's are pointing right at my family. What other logical excuse could there be?
>The person called Sam on mecfsforums from the Journal of Virology says they are not a virologist.
Anyone else care to guess why they are there?
>"There is no conspiracy. Science is just taking it's natural course and if that course ends up in a different destination than we'd hoped, as is looking likely, then so be it."
This is how you can tell apart people that have or haven't bothered to read about the last 20 years of ME/CFS history.
>@Anon 8-19-11 4:08
I didn't know that the mecfsforums was a closed forum not open to critical thinking. Maybe, he is on their to correct the pseudoscience that is constantly being promoted. But, I betcha that he is being constantly being ridiculed and mocked on there.
Paranoia breeds on that forum. If there is a conspiracy then Harvey Whittemore, an attorney, can certainly file under the FOIA to obtain information to that fact. He's filed legal action for denial of permit by Sparks,NV for building a casino and another legal action against a developer on a real estate community they were building. He certainly more than quantified to find out the truth.
>Yea yea. And pigs can fly.
People can see the horrid nasty tricks that you people are up to with your pseudoscience. There is no other way to argue against a finding then though replication or using clinically validated assays. What on earth are you afraid of?
You are scared to death that some scientists in their labs have created variants of HUMAN GAMMAS and have no care about the people that are now sick.
Then there are the billions that can be made off rediscovering the WPIs/Ruscetti's finding, again loosing time for those people who are already sick.
>I think it is premature to credit John/etc with being correct that Lombardi et al and Lo et al just found a contaminant. One must look at the entire picture. Knowing that this is getting boring I will repeat myself.
1. A murine leukemia virus-related virus was found by three independent labs in the 1970's to be present in cancer but not normal tissue of patients with lymphoid and marrow cancers. This was long before any tissue culture source of a contaminating virus.
2. Some of us have responded to ARVs. Fortunately I have measurable values with my leukemia so it is easy to folllow the response. My CFS symptoms improved coincident with improvementl of my cytokine signature. In our discussions we have not mentioned the characteristic cytokine signatures that the WPI found in CFS patients. Where did the cytokine signature come from? In my case, the cytokines improved with ARV therapy so at least in me, a retrovirus appeared to be driving both my leukemia and my CFS. There is nothing unusual about me or my clinical problems to suggest that my course is unrepresentative of what is happening to the CFS nation.
3. Our informal survey appears to show transmission of CFS from one partner to another more frequently than would be expected by chance. Of course the clinical situation is complicated and there have to be susceptibility genes that determine who will get sick and in what ways they will get sick.
4. Even looking at the investigation process that was necessary for Lombardi et al to get their positive results is instructive. If the WPI was finding a contaminating virus, one would expect that it would have been detected easily and in a stereotyped fashion with each patient. We all know that this is not the way it happened. Multiple detection methods had to be employed for some patients. This was the case with me.
Michael Snyderman, MD
>@Michael Snyderman MD
do you have the citations for point (1) above? I had never heard about this murine leukemia virus-related virus being found by three independent labs in the 1970's before
>@Michael, Thank you for repeating yourself
And, repeating myself re: "conspiracies". In early 1992, when I was first very ill, I saw a doc in NYC who was an HIV researcher. He said he'd ask his friends in virology research around the country what they were doing vis a vis CFS. A week later he told me that they were all saying the same thing: The government was actively suppressing research into CFS. Because they didn't want to spend the money. AIDS eventually forced their hand as too many people were dying horrifically in public. CFS had four reasons it could be more easily ignored back then: 3/4 cases were women; there was no obvious biomaker; the symptoms were invisible; and no one was dying of it (as it seemed back then).
I am more struck by the NIH's failure to do anything than the bad research at the CDC. I don't think Anthony Fauci is stupid. I think choices were made.
There are different kinds of conspiracies and not all of them involve a cabal in a back room making a plan. Sometimes it's a series of decisions, say, to kick the can down the road, put off dealing with a problem that can be put off. And then over time egos and reputations are involved in admitting mistakes were made.
And that leads to not giving out research grants, and then young researchers learning that even applying for a grant to study CFS is a career killer. (I was told this in 1998 by a young HIV researcher in San Francisco.)
CFS is too severe, too disabling, for everyone in the top tier of the NIH to have no inkling that it was a new disease.
I think we all are taking away a different message from Jamie's blog; and what I'm taking away is her realizing that if the XMRV and related retroviruses is shut down for whatever reason, it will not lead to $$$ spent looking for other causes and treatments. We will go back to pre-October 2009, when no money was flowing at all. And that we will wait another ten years for something, anything to shake up the NIH/CDC and that many of the older patients will be dead for one reason or another by then. And younger patients will be deep into years of suffering and life opportunities lost.
And that's very sad.
michael a.
>Dr Deckoff Jones posted them a few weeks ago.
They are amongst these:
'Human sarcomas contain RNA related to the RNA of a mouse leukemia virus' Kufe D, Hehlmann R, Spiegelman S. (Science, 14 January 1972)
'RNA in Human Leukemic Cells Related to the RNA of a Mouse Leukemia Virus' R. Hehlmann, D. Kufe, and S. Spiegelman (PNAS, February 1972)
'Viral-Related RNA in Hodgkins' Disease and Other Human Lymphomas' R. Hehlmann, D. Kufe, and S. Spiegelman (PNAS, July 1972)
'Burkitt's Tumors Contain Particles Encapsulating RNA-Instructed DNA Polymerase and High Molecular Weight Virus-Related RNA' D. Kufe, I. T. Magrath, J. L. Ziegler, and S. Spiegelman (PNAS, March 1973)
'Sequences Present in Both Human Leukemic Cell Nuclear DNA and Rauscher Leukemia Virus' William G. Baxt (PNAS July 1974)
'Rauscher-leukemia-virus-related sequences in human DNA: presence in some tissues of some patients with hemotopoietic neoplasias and absence in DNA from other tissues.' G S Aulakh and R C Gallo (PNAS, January 1977)
This one is also interesting.
Characterization of a C-type retrovirus isolated from an HIV infected cell line: complete nucleotide sequence. I. Parent1, Y. Qin1, A.-T. Vandenbroucke1, C. Walon2, N. Delferrière1, E. Godfroid3, and G. Burtonboy1 (1988, Arch Virol)
"This virus, referred to as retrovirus X [2], is characterized by a Mn2+ dependent reverse transcriptase activity and, therefore, it is likely to be a member of the so-called manganese dependent group of mammalian type C retroviruses, which includes Moloney murine leukaemia virus (Mo-MLV), feline leukaemia virus (FeLV), simian sarcoma virus (SSV) and gibbon ape leukaemia virus (GALV) [19]."
"The overall genetic organization of the retrovirus X, (5′−LTR-gag-pro-pol- env-LTR−3′) confirmed that the retrovirus X belongs to the MLV-related retroviruses. No additional gene was identified."
>Posted for Mary Schweitzer in 2 parts:
So far, while they have shown it is POSSIBLE to create a gamma retrovirus by manipulating segments in the constant reuse of the same cells over and over again in cancer research, they have NOT proved that was true for XMRV. Even if they do prove it, and prove that XMRV could not impact humans, and explain how come the little devils jumped into 3% of control samples and 2/3 of patient samples, and explain how I ended up with antibodies to a lab contaminant (and they claim all of that) …..
This is not a good story that Coffin is telling. What are the odds that they would have been creating new retroviruses for years (Oh! Now they tell us!) and they would NEVER create one that could infect humans? This is not a happy story.
It reminds me of how certain they were that pathogens didn't jump species, so they could be very careless (and they were).
I think what frustrates me the most – and also makes me really distrust SOME of the players – is their complete absence of interest in existing peer-reviewed literature on immune defects, cytokine abnormalities, beta herpes viruses, Coxsackie B – to his credit, Harvey Alter originally showed interest in all this, but I'm not certain that he will be permitted to continue studying that. He is at the National Cancer Institute. The correct NIH agency for what I have is NIAID (National Institute of Allergies and Infectious Disease), but that has been ruled by Anthony Fauci since 1984 (so he was part of the AIDS coverup, too. And Fauci just LOVED Stephem Straus.
I'm having a hard time getting a read on this. Clearly NIH has soured on us. Lipkin promised that if ANY of the three institutes found XMRV or gamma retroviruses, that would be a positive study. I was fascinated by the scientist who piped up that he thought he had found a retrovirus connected to rheumatoid arthritis (an invisible disease like our own), but he was convinced by other scientists he hadn't. Hmmmmm. Hadn't he?
If you want to be talking about a Plan B, not a bad idea given the track record of the government when it comes to us, go ahead. But I think I will wait a bit longer to see what happens to the Lipkin study.
And while we are waiting for science to catch up to whatever retrovirus is there, we really should be publicizing the beta herpesviruses (HHV-6A, HHV-6B,HHV-7, and cytomegalovirus). We should be promoting the work of the HHV-6 Foundation.
Then there's Coxsackie B (an enterovirus – polio family of viruses) – so ignored for decades by the US that Dr. Chia had to turn to Chinese herbal treatments when he diagnosed his son with it. Chia's finding was also interesting because it showed that blood samples may not be the best way to look for viruses in research (the pathogen showed up in his son's gastro system, not his blood) … And interesting because the Behans pinned M.E, on Coxsackie B 25 years ago, before the shrinks and insurance companies ran away with it.
>Continued:
Something very interesting has been coming out of the research by the Lights I Utah, and Gordon Broderick, one very bright young jan who sees the disease as a great challenge for a researcher, has a multi-million dollar grant to lay with in Alberta (Go Canada!)
And don't forget Ampligen. Why does it work so well for some of us?
But I find myself drifting back to that single paragraph on CDC's website that lists everything I am positive for ( and I'm positive for a LOT) as INAPPROPRIATE for CFS patients. That tells me we need to publicize what we know about those tests, because the insurance companies are afraid of them.
If XMRV gets shoved under the rug (and do not underestimate the ability of CDc and NIAID to pull that off), we still have ammo. If ARV's don't help [and it was always a gamble – GRV's are neither HIV nor HTLV (I and II)], we may yet get Big Pharma interested in us as a one million+ person market for antivirals – and there's now the possibility of a broad-spectrum antiviral some day, like the broad-spectrum antibiotics we're so used to. And Ampligen. And GcMAF. Every year the HHV-6 Foundation's research conference produces some very interesting results (how about ciHHV-6 – chromosomally-integrated HHV-6, which cam be inherited in a "Mendalian" manner – that is, like you can inherit blue eyes or sickle cell anemia).
Whatever you do, do NOT give up hope.
Mary Schweitzer
>Dr. Snyderman, I'm not sure about several of your assertions.
1. Dr. Deckoff-Jones has went on at length about how mouse cells and tissues were used in the production of vaccines since the 30's. However you say that tissue culture sources of a contaminating virus were not available even in the 70's. Is there something I'm missing here? Do you have any evidence that there was no tissue culture source which could have housed MLV's? I'll ask as well for a citation on what exactly was found by these labs.
2. The WPI's cytokine profile has not been shown to be the product of infection with a retrovirus, or even an infection with any virus. I'm not sure, but I question whether the patients in that study were picked out before the WPI even 'discovered' XMRV, therefore the cytokine profile could be the result of any number of things, including infection with another virus and/or viruses.
3. This still does not relate to the specific findings reported by the WPI and Alter and Lo.
4. The fact that multiple detection methods had to be used might just as well point to contamination, not against it.
For instance, if one technique was negative, then that would mean that another technique had to be used. This doubles the chances of contamination, not halves it. The fact that patients are not positive by all methods employed but rather only some, as well as the fact that the WPI has reported that patients' 'positivity' will vary from day to day seems to me to be more suggestive of contamination than it does true infection.
No one is saying that CFS patients (which I am one) aren't really suffering from some organic disease and/or diseases, including autoimmune disease, persistant viral infection, neurological damage resulting from some acute infection, etc. However your 'bigger picture' is all basically irrelevant to the WPI's and Alter and Lo's findings due to the fairly large (and growing) body of research which pretty comprehensively suggests, from multiple and independent lines of evidence, that both of these labs' findings are indeed the result of contamination. As far as I'm concerned, pretty much the only finding out of the original study which still has any legitimacy is the WPI's antibody findings, with Harvey Alter also stating to the media that he and Dr. Lo were also finding antibodies in most patients but not most of the controls. The import of these findings are still unresolved though. Here's waiting for the BWG and Lipkin results!
>Anon @ 7:06- "There are different kinds of conspiracies and not all of them involve a cabal in a back room making a plan."
To this I say- exactly. However these are precisely the types of conspiracy theories being promoted in regards to XMRV research, which is why they are so enormously tiresome.
>@ Dr. Deckoff Jones.
I think this has been the most productive/intense blogs I've seen written here. Tears are running down my cheeks.
Something may or may not come up in my lifetime. As others, I was jumping for joy when the Science paper came out.
Reality with this crap condition is brutally hard for all of us.
But the science is not panning out for XMRV.
Let's look to the future, learn from the past and deal with the present. Stop wasting energy on something that isn't going to happen.
The serenity prayer comes to mind.
"God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
We need to be brave my friends, very brave. We are all in this together.
Laurie B.