Where large sums of money are concerned, it is advisable to trust nobody. ~ Agatha Christie
Thank you to Kristin Loomis, for contributing her comment and for the additional information she provided privately. I have a better understanding of the HHV-6 Foundation’s policies and interests. I understand that retroviruses really aren’t on the foundation’s radar these days. I apologize for any inaccuracies, this time, and anytime; I do my best to fact check before publishing, and to limit any criticism that is directed at an individual to what can be verified on the internet, not gossip. I write each blog with the information at hand at that moment, intending to stimulate discussion. It is personal opinion, reaction to the events, public and private, not investigative journalism, though I wish a good investigative journalist would take it on. I’m getting mail suggesting that I interview people before posting blogs, but I have a day job again:). In any case, the information circulating that HHV-6 Foundation funded Knox et al is apparently incorrect. I invite anyone who feels they have been criticized unfairly to join us. Everyone needs to know the truth.
In your comment, Kristin, you said that you believe that Abbott funded Knox et al. I guess it’s logical to conclude that if Abbott appears on a paper, there is money involved, either because they funded the study and/or there is a patent and potential lucrative test involved. This raises a number of questions. I hope that anyone with information to answer these questions will contribute to the discussion as you did. I have never thought that there is a conspiracy in the sense that Peterson, Knox, Coffin, Stoye, Vernon, McCleary, the editors at Science, et al are having conference calls plotting our destruction. Each individual has their own reasons for doing and saying the things they have.
In my opinion, whoever funded their study, Knox et al have some pretty unsavory stuff to explain to the patient community. If I put the best spin on it possible, then the patients have been harmed by misguided acts. The publication of their shoddy work was unethical and immoral, in my opinion. The collection of the specimens in the first place for this purpose is inexplicable to me. Even if Peterson woke up one morning and said OMG, XMRV is all a big mistake, it is inconceivable to me that he no longer believes it is a retrovirus. So his desire to bury XMRV has to be about being right, ego and revenge, or money. Roche funding Valcyte? Hemispherx funding Ampligen? As I’ve said, he is welcome to respond. I will be happy to post anything he’d care to share. I would like to point out here that although I’ve had a lot of questions about Dr. Peterson for a long time, and have heard many stories, from protagonists and patients (always my most important source), I didn’t mention his name on this blog until the publication of Knox et al, which I took as a declaration of war on the patient community.
Abbott turns up all over the place, e.g. link; see Industry Relationships at the bottom of the page. They are clearly interested in XMRV. Their employees appeared as co-authors on negative and positive papers in Belgium, the positive paper being about a test for XMRV in prostate cancer tissue, not blood. When someone does a study, they know what they want to find; then they blind it to make it convincing, keep it honest. It makes no sense to do a study knowing at the outset that your test detects nothing, unless that is what you were trying to show in the first place.
From where I sit, there are many unanswered questions. It would be lovely to have no need of considering anything but the unfolding science, answering all of our questions in logical sequence, so everyone could take the high road; but that isn’t what happened. Thus my questions of the moment. Why and when did Abbott approach Konstance Knox to do a study on XMRV, when she had never published on anything but HHV-6 and owns a commercial lab dedicated to it’s detection? Why is Abbott’s funding of Knox et al not disclosed? Why would Abbott want to publish a negative detection study? Who is Graham Simmons and what is his stake, as he appears on negative, equivocal and positive papers? He works for a business entity involved in transfusion science and has a teaching appointment at UCSF, as does Jay Levy. Where do Roche, manufacturer of Valcyte, and Hemispherx, manufacturer of Ampligen, fit in to all this, since it seems likely they are a piece of the puzzle as well? What else do these people/companies have waiting in the wings? Intellectual property laws support a unique patent. Who put pressure on Science to rush Knox and their EEC to press when they did? When did Dr. Peterson collect the specimens for Knox, and what was his relationship to the WPI at the time? Did he inform everyone of what he was doing? You can’t get into anyone’s head. In the end, only the Shadow knows. But facts, actions, dates can be verified.
Nobody wants to have anything to do with CFS, except the WPI (and the CAA, with their peculiar spin). It’s common to hear that this or that researcher is sorry they got involved in CFS, because the advocacy community is becoming so strident. I’m not sure what the answer is. Polite hasn’t gotten us anywhere, as witnessed by the useless money that’s been spent on the CAA over the years in their pitiful attempt to validate the illness scientifically. If that had worked we wouldn’t be confronted with the psychiatric community wanting to label us with “CSSD”. The CAA too is free to respond in any way they like; the comments on this blog aren’t moderated.
ME/CFS is of retroviral origin, as is ASD, in my opinion. Read the HIV and animal retrovirology literature, much of which is referenced in previous blogs. It’s all there, plus the methylation defect and mitochondrial issues, covered to a large degree in the HIV literature, that were making up the bulk of my reading until the recent salvo was fired. The parallels are obvious. Nothing we’ve ever had to work with as physicians comes even close as a workable model to provide us with an approach to treatment, with a chance of healing the patients, forgetting about whether XMRV is the major player or not. For an individual to take any action at this time which has the effect of shutting down research into the retroviral origin of the disease is a crime against humanity.
Nobody is saying that the associated, opportunistic infections seen in ME/CFS aren’t important, anymore than Pneumocystis is unimportant in AIDS. It is exactly analogous. In this case, there may be interaction between viruses. Activation of latent viruses may benefit the underlying retroviral process, turn it on if you will. Another possibility is that any persistent infection causes downstream inflammatory changes that favor activation of provirus. The research into how retroviral etiology explains CFS pathophysiology needs to proceed, even before everything is sequenced and proven, even while XMRV’s defendants are being raked over the coals. Everyone involved knows it’s much bigger than whether individuals get discredited or laughed at. Scientists and doctors are much the same when it comes to fear of ridicule restricting their abilities to fulfill their prime directives.
In the end, science will tell us who is right, irrespective of personalities, unless the work isn’t done at all. Although I look forward to the results of Dr. Lipkin’s study, and from what I have read and heard, he is worthy of the respect he has been proferred by being put in charge of such crucial work, it seems wrong to me that it all rests on one man’s conclusions, or the ability of a couple of scientists to flawlessly reproduce their work, though they will certainly try. Maldarelli, Lipkin, XMRV Blood Working Group. That’s not much for a million sick people. When John Coffin declared XMRV dead, he said it could be another retrovirus. Is he looking for it? Why is the federal government going to let this go another year, waiting for a ruling on one virus, before considering the bigger questions? It needs to be studied as an enormous health crisis, whatever the outcome of the work on XMRV. If it were anything other than a kangaroo court in session on a federal level, the work would be a priority, with our Center for Disease Control finally trying to do some controlling of our disease.
>You might consider the possibility that isentress is working on something besides a retrovirus. Such as a herpes virus.
http://www.sciencedaily.com/releases/2010/09/100923081859.htm
For all you know, the HHV6 foundation may be on the "right-est" track. Who knows.
You also might consider the fascinating possibility that something, a virus, or a strain of borrelia, or who knows what, could activate an endogenous retrovirus–giving you an autologous retroviral infection…
The idea that autism is due to a retrovirus seems really unfounded…on the other hand, something like BPA, or BT toxins (the latter genetically engineered into crops and present in 93% of 30 pregnant women, 80% of umbilical blood in their babies, and 67% of 39 non-pregnant women, and in mice causing all kinds of inflammation, activated immune function etc…) that such toxins, widespread, might be causing illness in kids these days…
There are many possibilities. To be so convinced of one cause can be a bit blinding…
>Or even if XMRV is exactly what its staunchest supporters say it is, maybe it only goes active under very specific conditions.
That would be much more consistent with the epidemiology of the disease than the idea that it's the Killer Bug from Hell.
Below is Harvey Alter's comment from the State of the Knowledge conference.
Why is it that (to my knowledge) no one at the WPI has thus far made a concerted effort to focus on his question?
The obvious suspects here are the biotoxins and herpes viruses, both of which are very inflammatory.
Here's Gerwyn Morris's nice summary of how the three might tie together.
http://www.imeassoc.com/Cause_of_ME_outbreaks_.html
XMRV will not be any less important to any of us if it turns out not to be the ONLY cause of this illness, but you wouldn't know that just from reading this blog.
The idea that this should be framed as a competition between XMRV and other viruses, or between XMRV and toxins, is really peculiar.
Best,
Lisa Petrison, Ph.D.
lisapetrison at yahoo
*
Alter:
And lastly, I want to lay out the other postulate that I had. Whatever the etiology of ME/CFS is, it happens in a subset of patients, not in all patients who get any virus or multiple viruses. There must be something unique in the host that facilitates the syndrome. I don't think that has been sufficiently explored.
Q:
What do you mean by, it happens in some? What's the "it" that you're talking about?
Alter:
The syndrome that we call ME/CFS occurs in only a small minority of people who have a viral infection, whether it's a particular viral
infection.
That's classic for viral infections. Some people get sick, some people don't get sick. Some people get over it quickly, some become chronic carriers.
But here, it seems to be a very small pice of the pie who go on to this very full syndrome. What is it about those people that makes that happen?
>Jill:
I was so happy to see your comment as I know the wonderful work you've done with Dr. Amy Yasko.
Dr. Yasko and I have discussed doing an article on XMRV origins as it meshes with her long-standing suspicion that the passage of yellow fever virus through mouse tissues in the late 1920s and early 1930s was the start of the autism epidemic. Curiously, CFS/ME popped up in the same time frame.
The toxins you mention also have the effect of shifting the body's immune response so that it does not defend against viruses. You might want to read a recent interview by Dr. Wakefield on Natural News for a better understanding.
My daughter with autism/seizures, my wife, and my mother-in-law have all tested positive for the XMRV retrovirus. My father and I have tested negative, suggesting that the most likely route is from mother to child.
The ability of a retrovirus to moderate gene expression has long been known. My daughter has also tested positive for HHV-6 and she underwent the suggested treatment with no positive change.
If you'd like to discuss this matter further and I could provide some of my insights, please contact Dr. Yasko to get my information.
All the best,
Kent Heckenlively
>The fact remains that XMRV/HGRV's are implicated in M.E. and they should be researched. We need these questions answered, and they will not be answered without real research from real scientists.
If research into HGRV's is dropped, as John Coffin suggests, these questions will remain unanswered, and he further suggests nothing else to help sufferers. Does the government think the many thousands who are suffering from M.E. will just shut up and sit down for another 30 years? If that is what they think, they are sadly mistaken.
Regardless of what happens with XMRV/HGRV–even if they manage to bury the research–a sleeping giant has been awakened which consists of a newly organized group of thousands upon thousands of sufferers who are now awake and watching. I do not think they will now sit back down and shut their mouths and wait to die quietly.
Patricia Carter
>Every one go and look at this and the date at the bottom!!!!!
http://129.43.52.184/proteins-and-proteomics/protein-expression-laboratory/whats-new-at-pel/xmrv-protease-plasmid/
V99
>Lisa,
Increasingly, I feel like you aren't even reading what I write, but using my blog for your own agenda.
Jamie
>I put a poll up on a popular ME,"CFS" forum about a year ago asking ME parents who had children if their children had autism. If I remember correctly there were 12 responses. Four parents said yes, one said questionable and 6 said no. Just an informal poll and not evidence of a connection but since the government is not looking into it polls are all we have.
Also does no one ever wonder how cooperative diagnostics found so many CFS mothers with autistic children for there "ahem" XMRV study?
Interesting in the least they could come up with so many kids with autism whose moms had CFS so fast. It seems the connection of ME to autism is their to me for those brave enough to look or listen.
I have sent a letter to Tufts asking Mr. Coffin since he stated that it very well looks like CFS could very well have a pathogen involved will he now after seeing the suffering the disease causes be helping to expose the pathogen? Or does he consider his self declared "debunking of XMRV to be "Mission Accomplished".:(
I know he said his feelings were hurt by patients but for the 17 million suffering one would think he could put his own feelings and ego aside and be part of the solution. I am afraid that he is just as content to propose speculations on how HGRV's are just contaminants then be proactive and help us find a cause,cure or treatment.
Keith Baker
>@Lisa – it isn't the WPI or even its supporters who have been framing this as "XMRV vs other pathogens"; that has been done by those who adhere to particular hypotheses involving those other pathogens as being causative. The competition is for funding, and many who favor models with EBV or HHV-6 or even Lyme as the primary causative agent are concerned by the attention XMRV is getting, and have failed to understand the subtlety of the retroviral model, which unifies all the evidence at hand about different pathogens. The point of the WPI's research is to investigate the association between MRVs and ME/CFS, not to say that MRVs are solely responsible for disease pathology. Whether they are necessary and sufficent as a cause, or necessary but not sufficient, or even not necessary at all, remains to be seen. It may well be that HHV-6 and other pathogens play an important role in generating ME/CFS pathology in many cases, and function in concert with MRVs. We won't find out, however, if this branch of research is closed off, which is why the unscientific design and claims of the Knox/Levy study are so problematic. Its poor design and extremely unwarranted claims and assertions themselves raise the issue of political motivation, as – like other negative studies – they stray so far from appropriate scientific protocol and conclusions.
>"Nobody wants to have anything to do with CFS, except the WPI (and the CAA, with their peculiar spin)."
This above statement is not true.
Since 1997 the National CFIDS Foundation (ncf-net.org) has been doggedly and faithfully with little funding fighting to find the cause of this devastating,horrific disease.
In 2003, through the Hokama Pathology Lab at the University of Hawaii John A. Burns School of Medicine, the NCF has been running tests of PWC's
blood and finding an epitope of ciguatera neurotoxin. Since 2003, approx. 2000 PWC's have submitted their blood. To date, every single PWC sample has been POSITIVE in very high concentrations. This is not the cause of the disease, but is indicative of some major problems and the neurotoxin itself is creating very severe problems(liver, heart,etc.).
If anyone is interested in getting the test or any of the other research by the NCF please go to their website, ncf-net.org
Thank you.
Sumitra
>If XMRV and/or related family of retroviruses is deemed "real" by Lipkin, I think it will open up a floodgate of NIH funding for XMRV, CFS, and related illnesses. If it is deemed "unreal" that will be the end of the hope for significant funding by the NIH.
That's how I see it, regardless of the role of HHV6A, Lyme, environmental toxins, etc. From 1983 to Oct. 2009, the NIH did virtually nothing, and the CDC did worse than nothing.
Is there any reason to think they will go back to same old same old without Lipkin confirming a retrovirus?
Some here asked, if Coffin thinks another retrovirus is the cause of CFS will he research it? Well, has he so far? Has he written grant requests so far?
To trot out a story I've been telling for years: When I was first ill in 1991-92, I saw an HIV researcher with a small clinical practice in NYC. he was convinced I fit the picture for CFS and promised to call his research pals in virology around the country to see what they were up to. He told me they all said the government was actively suppressing research into CFS. Why? I asked. Money, he replied. Do you think they want to spend all this money on HIV/AIDS? No. But people are dying horrifically in public and it can't be avoided. CFS has four reasons why it's easily swept under the carpet: 1. 3/4 cases are women; 2. symptoms are invisible; 3. no biomarker; and 4. no one is obviously dying of it.
There are all different kinds of conspiracies. I don't know which kind has led to what I was told remaining in place 20 years later. But there is some serious kind of forces at work to ignore this terrible public health crisis, still.
So, whenever I hear folks saying not to put all the eggs in the XMRV retrovirus basket, besides the research indicating its importance, does anyone think there will be serious funding of any other possible causes if XMRV research is shut down? Or treatments?
michael
>Abbot lab might have funded Knox et al, but the following week they definitely put this abstract out. Simmons is on this too. Flip flopping researchers everywhere.
http://www.retrovirology.com/content/8/S1/A220
A prototype RT-PCR assay for detection of XMRV in multiple human sample types
V99
>I'm not a scientist but I don't understand how the Lipkin Study is going to help sort anything out. If everyone involved is using the assays they use now then it will show that The WPI and Alter Lo pick up positives to XMRV and friends at a much higher rate than controls and the CDC finds 0/0.
That just leaves us where we are now does it not? All the naysayers can keep saying contamination, crossreactivity and on and on… If I'm wrong please help me out.
>>So, whenever I hear folks saying not to put all the eggs in the XMRV retrovirus basket, besides the research indicating its importance, does anyone think there will be serious funding of any other possible causes if XMRV research is shut down? Or treatments?
No, I do not think that there will be serious funding (or any particular funding at all) into this disease if this particular retrovirus ceases to be seen as a factor.
This illness is no more serious if it's caused (partly or fully) by a retrovirus than if it's not. But the cachet of there being a retrovirus involved means everything. Everything else is a distraction.
I used to think that what matters is finding out the truth of what's causing the illness. Probably that's not the case.
That is really depressing.
>Dear Jill Neimark,
regarding your question of retroviral connection to AUTISM:
Vertical transmission of HIV from mother to baby is a known, and there are many peer reviewed studies illustrating autism-like symptoms in pediatric HIV, with regressive onset, dating back 20 years ago- just about the time when the REGRESSIVE AUTISM epidemic began to take root. We've been drowning in chemical soup for decades, but we've only been drowning in autism for 20 years.
Two such studies- from Moss, Wolters, and Pizzo (National Cancer Institute)
1.) "Impairment in Expressive Behaviour in Pediatric HIV-infected Patients with Evidence of CNS Disease"
2.) Same authors, 1992 paper "The Development of a Q-Sort Behavioral Rating Procedure for Pediatric HIV Patients
One of the most interesting things- and that which brught my attention to the common features in HIV and autism is disaccharide intolerance of a majority of children with autism, requiring a strict starch-free diet. Again, this is a known issue in pediatric HIV. Autism Research Institute has been collecting surveys from parents of which treatments work for autism for more than 20 years, and among the top 5 are the "Specific Carbohydrate Diet", which removes all starches/disaccharides- giving digestive relief and improving neurological function.
In fact, there are so many common symptoms of HIV-infected children to children with autism, I can't begin to list them all here, but I can provide a link for those who are interested in advancing science, and would hope you would take a close look here:
http://www.autismcalciumchannelopathy.com/HIV_and_Autism.html
I'm unaware of the volume of same similarities in children affected by any of the other possibles you mentioned.
(Please be sure to see "Call to Action letter", upper right side of screen at above link.)
Sincerely
T. Giles,
CFS mother, ASD son
>Jill Neimark, you seem to be very uneducated about how unbelievably common it is for a mother to have CFS or Fibromyalgia and also have a child with autism. Nor do you seem to be aware of the overlapping symptoms of these diseases. I am too sick and too tired to educate you about these but take my word for it.
-J. Hankinson
CFS Mom, ASD daughter, CFS daughter
>Dear Sumitra,
I apologize. That was poorly worded. Thank you for contributing.
Best,
Jamie
>This blog is usually very informative, but lately it has turned into more of a rant. There are lots of legitimate questions about the recent research, but it would be much better if we could get real answers from sources, not just speculation based on rumors. You say you don't know him, but did you try reaching out to Dr. Peterson to see where he is coming from before you wrote this? You might agree or disagree with him, but it certainly would be better for us all to have accurate information out there to debate.
You have the right to write anything you want on your blog, but it would be more useful and it might better serve the patient community if it was vetted before you post it.
>Many XMRV+ ME patients have been reporting on blogs that they have been tested for HHV-6 and were found negative. I am one of them.
>This is what I see on this blog by those of the "XMRV is the only answer" club.
Conspiracy theories.
Quacks.
Clutching at straws
Libel
Libel
Libel.
A retrovirus would not cause such desperate conditions as Autism and ME/CFS. I want to get well and you people are making the CFS community look like we are nuts. You are the minority opinion. XMRV is dead. Deal with it and move on.
Read a fifth grade science book, people. Get a clue.
Laurie B.
>Hmmm. Cort Johnson says the same thing as you, Laurie B.
>Jamie — your rants are doing nothing except show how ignorant you are. You are doing the WPI a disservice with your stupidity. Post some science for once. As a patient, I am embarassed by you and you pseudoscience. Really!
>To Anon @ 7:48,
The point of the Lipkin/Blood Working Group multi-lab studies is that they are using blinded panels of patient and control samples, meaning that only the individuals in charge know which samples come from CFS patients and which samples come from controls. All samples are collected at the same time at the same place by and from the same individuals.
The Blood Working Group study has had three parts thus far, with the first phase examining whether differences in sample procesing had any effect on results. The second phase examined whether PBMC's, whole blood or plasma was the best medium to test. The results have thus far been inconclusive- "The Blood XMRV Scientific Research Working Group was formed to facilitate collaborative studies into the impact of XMRV in blood donors. Studies will evaluate XMRV detection assays in terms of sensitivity, specificity and reproducibility; assess performance on specimens represented in existing blood donor repositories, and determine the prevalence of XMRV in donors. Phase I utilized analytical performance panels spiked with XMRV infected cells or virus. These panels were tested in a blinded fashion using XMRV nucleic acid testing (NAT) assays developed by six participating laboratories, with all laboratories determined to have sensitive NAT assays. Phase II represented pilot studies to compare XMRV detection using PBMCs, WB and plasma derived from individuals identified as XMRV viremic and antibody positive in previous studies. An unblinded pilot study resulted in two laboratories detecting MLV-like sequences in the plasma, but not PBMCs or WB, from all four subjects. A third laboratory detected no viral sequences. A blinded pilot study using the same four subjects and two validated negatives was less conclusive, with 3/4 laboratories detecting no viral sequences with any of the samples. A FACS-based serological assay detected antibodies in 3/4 XMRV-positive individuals, but also in 1/2 negatives. Seroreactivity to XMRV was not observed in plasma samples by Western blot. Phase III involves further evaluation of the clinical sensitivity and specificity of candidate assays by using a blinded panel of 35 pedigreed positives, together with negatives and controls. Results are expected soon. Phase IV will test a blinded panel of 300 blood donor samples."
http://www.retrovirology.com/content/8/S1/A231
Both of these studies are basically a contest to see who can 'break the code' by accurately identifying the patient vs. control samples by running whichever assays they want. So any arguments about labs using 'non-validated' assays is meaningless, since each lab will be using their own assay. If the WPI, Ruscetti's lab at the NCI and/or Lo's lab at the FDA can identify the patient vs. control samples, then they have basically proven that their assays really can detect XMRV/other MLV's, whatever the results the other labs involved have, positive or negative. However if the WPI/NCI/FDA cannot tell patient vs. control samples then I would imagine that we can all basically say goodbye to XMRV. This is a trial by fire, double or nothing, put up or shut up and may the best lab win all rolled into one.
>now pcr in reality is a very complex enzyme driven chemical reaction.There are a number of variables governing the yield of a chemical reaction.These are called independent variables.This is very simple science which anyone can confirm by asking their old high school chemistry teachers.The most common things affecting the outcome of a PCR reaction are the initial concentration of viral nucleic acid,magnesium choice and combination of primers and something called the annealing temperatures.This was actually demonstrated in Lombardi et al.Knox/levy used the PCR assay which only detected Gag sequences in 7% of people in Lombardi and further reduced its sensitivity.to say that Peterson only became involved when the Abbot workers were shocked because they could not find xmrv Gag in clinically positive patients which could not do so in Lombardi et al is stuff and nonsense
I have just read a load of unscientific biased drivel from people declaring their various hands.
Not one has offered a critique of the quite appalling departure from the scientific method witnessed in the work of levy and sing
all the independent variables were changed compared to the values used in Lombardi et al
In replication all independent variables remain the same
changing all independent variables and expecting the dependent variable namely detectable levels of xmrv to stay the same is absolute nonsense
to challenge the findings of Lombardi they must use an assay which is known to be able to detect xmrv if present
If they dont want to use a clinically positive sample to optimise their PCR assay then it is a simple matter to use the same reagent mix and cycling conditions
Whoever said that a retrovirus could not cause two neuroimmune diseases is just demonstrating their ignorance
The science stands a family of human MLVs has been detected in over 90% of people with a neuroimmune disease given the label of ME/CFS
If anyone does not understand this very simple science then reading a fifth grade science book might indeed be helpful
until some workers have the honesty and skill to conduct a study without changing any of the independent variables from the values used in Lombardi et al then the science cant progress and rhetoric will continue to rule
>"I have just read a load of unscientific biased drivel from people declaring their various hands."
Exactly, Gerwyn, you are the purveyor of unscientific drivel. You post crap. You are single handedly perverting science. Your pseudoscientific views mean nothing. Just an pathetic attempt to make your reality true. Except your reality is lies. People know the truth. Anybody who believes your deluded crap, is deluded.
>((((((((((((Jamie)))))))))))))
cheers
fly
>Keep on doing what you do, Dr Jamie. Questions need asking, and we need answers. Childish posts attacking personalities and trying to shut down debate mean nothing.
FWIW Abbott Labs produced the first mass test for HIV in 1985. I guess it made them a lot of money.
>Gerwyn is spot on Anonymous. If you really had one iota of comprehension of the research into HGRVs, you should now be able to explain why you think it is deluded. Others can then laugh at you with your unscientific crazy drivel. People do indeed know the truth and you are a hysterical contamination obsessive.
>Fair play to Jamie for going on the offensive if that’s what it takes to uncover some truths about an illness mired in lies for decades (especially when some of the lies are perpetrated by those who, allegedly, are ‘the patients’ friends’).
Several years ago, the UK Government's Advisory Committee on Hazardous Substances compiled a list of the top 100 chemicals of concern and wrote to the relevant manufacturers asking for more information. No-one responded and so the committee published the list. Within weeks, 30 fact sheets materialised that resulted in 30 chemicals being taken off the list. The other 70 remained.
If the ‘name and shame all, retract the innocent’ approach is good enough for 100 chemicals then it’s good enough for millions of sick people, in my opinion.
>I wonder if Annette and Judy are aware of what Jamie is posting.
>Jamie,
Thanks for your blog. Understanding the science (or not) is a huge issue. Those without deep science background are going to get lost and will (and have been) easily mislead.
What is really interesting is how there are government websites with conflicting information about XMRV/HGRV's.
Bottom line, the NIH is aggressively pursuing HGRV's (not just XMRV) since its impact will be huge. Addressing the conflicting information on the government websites would benefit many.
However, I can understand the desire to prevent hysteria when it becomes widely known that there IS a family of HUMAN retroviruses causing diseases.
The governments and biotech companies have known the risks of retroviruses IN PRODUCTS FOR HUMANS for 30+ years. The documentation is there if you look and I have downloaded many many documents.
Keep up the good work! ~ JT
>Someone wrote a comment a little while ago that got caught in the spam filter. I tried to put it through, but I think it was accidentally lost. It was a fair criticism, asking why I didn't ask my questions privately. I shouldn't have made light of it in the first paragraph. My reason is that the paper was public, it brought about the EEC, and I would prefer that the responses be public.
Jamie
>Jamie, why aren't all of these journals demanding, as a condition of publication, transparency in funding?
>Laurie
It is fairly well accepted in the scientific community that prenatal infections are a risk factor for autism in a child.
It seems that many parents with ME and CFS are having children with autism. SO it seems a natural line of scientific enquiry that if an infection is linked to ME then would that same infection be linked to autism.
I will try to crack open my autistic son' fifth grade science book so I can reach your level of understanding on the issue's involved here.
Inn the meantime I will continue to explore why my son could have fatigue, headaches, siezures, difficulty concentrating, and many symptoms that resemble my own and others with ME.
You may be interested to know the NIH is currently testing autisic individuals for XMRV. I guess they should read a fifth grade science book also. I will lend them my son's when I am finished.
In the meantime here is a good study for all to read.
http://www.sciencedirect.com/science/article/pii/S0166432808006980
Keith B.
>To Laurie – retroviruses do indeed cause very disparate conditions. Open your science book on HTLV for a start.
>"Dr. Yasko and I have discussed doing an article on XMRV origins as it meshes with her long-standing suspicion that the passage of yellow fever virus through mouse tissues in the late 1920s and early 1930s was the start of the autism epidemic. "
Kent, I wish you would do this article – I would love to hear more about this.
Caledonia
>Dear Jill Neimark,
regarding your comment that “The idea that autism is due to a retrovirus seems really unfounded”, it is quite the opposite. The links have been screaming in our faces for decades now.
The post above by T. Giles summed it up nicely. We have for a long time been staring at a real life, walking, talking human model of retrovirally-induced autism. Pediatric NeuroAids (read children with HIV-induced encephalopathy) is really another name for autism, in that affected children present with ALL the symptoms listed in all autism diagnostic manuals. The exact symptoms and their severity of course differ from individual to individual, exactly as they do in idiopathic autism. Those include: impairments in language, especially expressive language, behavioural symptoms: irritability, lack of social skills, repetitive actions (rocking etc), lack of interest in surroundings, restricted interests, lack of play skills etc. Please refer to published papers that T.Giles quoted, as well as other studies listed on http://www.autismcalciumchannelopathy.com/HIV_and_Autism.html (I can forward many more).
Most important fact here is that severity of autistic symptoms in those HIV+ children correlate with their retroviral load, and that successful lowering of viral load is in most cases followed by at least some degree of RECOVERY of neurological function = reversal of autism symptoms. A proof of causation if ever there was one. Plenty of published papers on that too…
Keep in mind here that idiopathic autism is diagnosed solely on the basis of presence of those surface symptoms. There is nothing more to it.
But just as important are the animal models of exogenous retroviral infections. Both rodent and primate studies show that active exogenous retroviruses, including murine gammaretroviruses, induce in their hosts a whole range of pathologies AND behavioural symptoms. Many of those pathologies exactly match those found in autism (and CFS for that matter), including but not limited to: microglial activation and inflammation, vascular endothelial inflammation, vasoconstriction and permeability, oxidative stress, systemic glutathione depletion, mitochondrial dysfunction, gluten and casein reactivity, autoimmune reactivity, glutamate toxicity, intestinal permeability/microbial translocation, hyperplasia of intestinal epithelial cells, pancreatic enzyme deficiency, disaccharide intolerance and malabsorption, autonomic/vagal stem dysfunction, abnormal cytokine profiles, and abnormal gene methylation.
For anyone interested in aetiology of autism papers like these should be required reading: “Behavioural and neurophysiological hallmarks of simian immunodeficiency virus infection in macaque monkeys” (Cheney, 2008), “Microglial activation and neurological symptoms in the SIV model of NeuroAIDS: association of MHC-II and MMP-9 expression with behavioral deficits and evoked potential changes”. (Berman,1999), and “Neurologic dysfunctions caused by a molecular clone of feline immunodeficiency virus, FIV” (Phillips,1996), to name but a few. I urge you to view the extended list here http://www.autismcalciumchannelopathy.com/retrovirus_action_letter.html and compare it to autism findings listed on the last page. Or CFS findings for that matter.
Lastly, no one would suggest that environmental factors do not play a role in host defences and susceptibility to infections, including HIV and even more aggressive viruses, but on the other hand those numerous animal studies show us that once perfectly healthy animals develop retrovirus-related pathology and behavioural symptoms solely as the result of them being infected. Without a toxin or pollutant in sight! Surely something to keep in mind.
>Dr. Deckoff-Jones,
Here is a response to your post:
1.WHY “WHODONIT”? Do you seriously believe that an “evil donor” could persuade Abbott Labs to fake data or one of the top virologists in the world (Jay Levy) to conduct a ‘shoddy’ study for the sole purpose of discrediting the XMRV story? We know that Abbott labs was interested in developing an assay to detect XMRV and WANTED a positive study. Abbot properly disclosed that they hold patents, meaning that they would benefit from a positive finding. Why not assume that they were trying to find XMRV and could not?
2.“INCONCEIVABLE”? Why do you assume that it is “inconceivable” that Peterson no longer believes that retrovirus is associated with CFS? The association has been suggested but hardly proven. Why is it such a stretch of the imagination to believe that Peterson entered into a study simply to study whether XMRV plays a role — or not?
3.“EGO, REVENGE OR MONEY”. You state that Peterson’s desire to “bury XMRV” has to be about “being right, ego and revenge, or money”. Is it impossible for you to assume he wanted to learn the truth? This is the explanation that would be consistent with his track record of standing up for CFS patients since the mid-80’s.
4.BURY XMRV? Why do you assume the authors of this paper wanted to “bury XMRV” because they agreed to let an outside lab test patients from the same practice as the original Science study? What is WRONG with testing patients from the same practice?
5.ROCHE, ABBOTT, ETC. I do know that Roche has no further interest in CFS patients. The subset with HHV-6 is very difficult to identify with existing assays, and they do not have much time left on their Valcyte patent. I can assure you that they are not trying to “bury” XMRV. On Abbott, Knox said they came to her because she has tested Peterson’s patients for years and has a biorepository.
6.CDC. I think we all agree with you here. There is much more that could be done. For starters, they could start looking in the brain tissue. Imaging data suggests that for most CFS patients the issues are "central" so we need to start looking on the other side of the blood brain barrier, not in the blood, where many of the pathogens suspected of triggering CFS rarely circulate.
Kristin Loomis
HHV-6 Foundation
>Folks, I don't want to get involved in a debate on autism's causes on Jamie's blog. I could, but I'd rather not.
>5.ROCHE, ABBOTT, ETC. I do know that Roche has no further interest in CFS patients. The subset with HHV-6 is very difficult to identify with existing assays, and they do not have much time left on their Valcyte patent.
Whoop! There it is!
Roche's stranglehold on the Valcyte patent is about to end.
Quiz time, kids:
How does Big Pharma typically renew their patents on profitable drugs?
Answer: Tie their use to treatment of new diseases.
Question: Is Valcyte currently FDA-approved for the treatment of CFS/ME?
Answer: (It was a trick question.)
"Roche has no further interest in CFS patients."
Really? Even though many respected physicians have professed Valcyte to be the wonder drug for CFS when IgG counts to herpes viruses are off the charts? Why wouldn't Roche be interested in proving a connection between high antibody counts and CFS symptoms, given the outrageous profit margins of Valcyte?
Is this why Dr Peterson is so strongly focused on HHV-6a now? Why the drop kick of XMRV to the curb and his return of professional interest to human herpes viruses as the causal link to CFS? Has Roche put him on the payroll, to help tie CFS treatment to Valcyte so Roche can extend their patent as an insanely expensive drug for the treatment CFS? Which doesn't really work all that well for many who have tried it? (At least, it didn't for me or my partner, to the tune of $20,000.)
I don't find the theory of Big Pharma attempting to derail XMRV research without merit, especially when so much potential profit is involved. As for Dr Peterson's obvious ditch on the pro-XMRV community and WPI in particular, I obviously don't know the actual reasons. But I wouldn't be surprised if grant money was behind this move, from major players in the for-profit health care industry. Like, say, Roche, for instance.
Seems all too convenient.
>Kristin Loomis do you know anything about virology?
The data was not faked. The study was shoddy.
You say the following:
"Abbott labs was interested in developing an assay to detect XMRV and WANTED a positive study. "
The assay they had published in the abstract in Retrovirology, that detects tissue positives. It was not the assay used in Knox et al.
>please continue to direct your comments to the patient community. this continued insistence the patients need to be protected from themselves and from alternate theories is nothing but crap. we've done the time, and now we want to know who has helped keep our condition untreated. i saw dr peterson in 1998, and i was positive he was on this bandwagon because he thought he could make a name by hanging on the other people's coattails (cheney, bell) and not have to do the hard work. the results of my tests were disclosed 1 at a time, and every letter he sent me recommended treatment based on the most current set of results he had in front of him. he was happy to provide a spinal tap in his office, but told me not to call him if i got "the headache". i did – for 9 days, and when i was finally able to get to the doctor i found there is much to be done for someone in my shoes. dan peterson hoped to be the poster child doctor for cfs – and now he's mad because he can't be it. the credit should go to people who really care, and i feel strongly you, jamie are one of those people. thank you for not taking your blog off to another blogosphere, and thank you for continuing the up front investigation that hillary started.
>Thank you for engaging the real questions, Kristin. We need to deal with this as a community. It is a festering wound that needs to be cleaned up, so it can heal.
1. I didn't say that Abbott Labs faked data. I said that they knew going in to the study that they didn't have a test that could detect anything on a CFS patient. If they had wanted a positive study, they would have started with a test that had been found to be positive on a human sample. Do you expect me to believe that they designed a test that they thought should work, then spent a bunch of money on a whole study, before they tried it out even once?
2. Whatever Peterson thinks about XMRV, it is inconceivable to me that he has dismissed a retroviral etiology for the disease. He got too far. He knows the same things that I know. He may have decided that there was a problem with the test, but that doesn't change the concepts involved. Does he think now that he was wrong all along, that retroviruses no longer fit? Yes, inconceivable, inexplicable, doesn't add up.
3. Even if he was motivated only by a desire to learn about XMRV, he is responsible for the results of his actions, which were predictable harm to the research effort. If his check results in a checkmate of retrovirology research, he has done immeasurable harm to the patients, not to mention the not yet sick. To postulate that he was personally unaffected, or didn't feel vindicated by assisting in a paper discrediting the WPI, seems rather unlikely, don't you think? It was a divorce. Why should we think he is the right person to evaluate his ex's short comings? Or that he is somehow impartial? That's just silly.
4. Why bury XMRV? That is the question of the hour, isn't it? Could it be to make it go away so that it can be rediscovered? And why test patients from his practice, except to discredit the previous work? There is no shortage of patients, nor a problem defining them.
5. As to who is in bed with whom, there is lots of future money to be made and none of us know what is going on behind the scenes. Let's hope it happens for somebody! As long as it's for the real thing. A test or tests for the etiologic agents. Thank you for sharing what you know with respect to Roche. I would be interested in your input with respect to HHV-6 assays.
6. Yes, I think we can all agree on this one!
Best,
Jamie
>That's laughable ms. Loomis . If Dr. Peterson really wanted to help his patients and did not have a vendetta against the WPI. He would have at least had Levy consult with Lombardi et al. Come on . Really?
>1. Knox couldn't find X if it jumped out and bit her
2. Levy has his own theories
3. Dr. Peterson was offered millions of dollars by Roche just ask Dr. Byron Hyde
4. Dr. Peterson left the WPI because he's invested in HHV-6
5. HHV-6 foundation is run by Ablashi . Ablashi is great friends with Gallo.
6. Gallo and Ruscetti hate eachother.
7. This is POLITICS
8. Patients aren't ignorant just because they don't have degrees
9. Google works
10. Money talks and Bullshit walks
9.
>There is never any reason to retest positives. All a study needs do is use the same selection methods and replicate. Are they all cowards and do not want to know the answer?
Peterson should be saying Knox et al was a rubbish paper. Where is he?
>Peterson's patients were not even asked to be in this study. It said in the Levy paper that no IRB was needed. From the paper:
These evaluations were performed by a commercial
(VIPDx, Reno, NV) or research laboratory (Whittemore Peterson Institute [WPI], Reno, NV). Twenty-six were reported as being XMRV positive and 11 were reported as being negative. Blood samples used from this patient
cohort were archived diagnostic specimens and,
therefore, exempt from IRB consideration.
The other fact remains that Peterson did not have records of who these patients were. The only person that could have had that information would be Knox. She either took the information from WPI's records or these were not the actual XMRV positives. It's been reported somewhere that neither Knox or Peterson had the information on who was positive or negative. Peterson is showing on the Board of Directors for HHV-6 Foundation and has been since 2004. That would justify a conflict of interest right there. Why didn't he just do more research on his HHV-6 theory rather then throw patients carrying a retrovirus under the bus. Some CFS patients could very well have HHV-6, but the majority of XMRV postives are reporting they are negative for it. The fact too remains there will be some CFS patients that will have an HGRV and some that will not. And that is another problem, the definitions.
>I'd Like To THANK JILL, LISA an KENT for their comments above. I found them well founded, thought provoking and constructive.
One thing our group is finding…..FYI…..is Autism in families….2-3 kids are autistic out of 6-8 siblings……and the autistic children have the same father, but different mothers. All Mothers test Negative for XMRV. WE are looking at The fathers. Just to throw in the mix….more studies need to be done.
And, don't expect Lipkin to find anything positive on XMRV. Our XMRV Labs have flip-flopped as have other patients I have talked with. This may be because it leaves the blood, plasma and serum and heads for Tissue.
And HHV-6…..the more we learn about HHV-6A and HHV-6B…the more evidenced based scientific studies produced….reflect a bigger monster than one would ever imagine for this stealth virus.
Throw in HSV1 and HSV2 and all of the 10-20 pathogens, and we have a cesspool of Diseases called Autism/CFS/GWI/Lyme and Epilepsy…all loosely linked with cancers and Leukemia. Plus….don't forget PON1. And any other genetic Predisposition that may or may not be present.
Julia Hugo Rachel
>I bet 99% of the people who are commenting here have never even spoke to Dr. Peterson and are thus just speculating. He's a clinician, not a researcher. He doesn't design the studies, nor does he have much to do with them except having a large pool of patients who are probably the best characterized group of CFS patients in any medical practice. Frankly, I'm shocked that the only study that has asked him for samples is the Levy one. They should all be studying his patients.
Look – the best predictor of future behavior as past behavior. Dr. Peterson has stuck by CFS patients through thick and thin. Heck he was the "genesis" of CFS. He most likely looses money on every CFS patient he cares for. Unlike many so called "CFS specialists" he's actually a very conservative doctor, and won't prescribe treatments unless there is a lot of evidence behind them or there is a real clinical trial. He has been through a lot of "we've found it" moments only to find out later that the "pathogen of the day" wasn't the whole story. There is no evidence that he has changed his motives regarding his patients.
XMRV may or may not work out – but it will stand or fall on its own merit, not because of how Dr. Peterson feels or doesn't feel about it.
>Has anyone considered that both a retrovirus and herpes viruses might be in play in CFS? Like XMRV or a similar retrovirus makes you succeptible to HHV6 where you otherwise wouldn't be? Like in HIV? These things aren't mutually exclusive you know… Perhaps the HHV6 researchers and the retroviral researchers and proponents should be collaborating instead of fighting?
>The divisiveness among the patient community and the researchers in this field is disgusting. Never at any point in history have we had such high awareness of CFS, yet the CFS community is as divided as ever and seems to prefer attacking each other on blogs over coming together to move forward. Its even worse because frankly, 90% of the "subject matter" that is argued about on this and other blogs is unconfirmed rumors, rants, and conspiracy theories. It doesn't seem to occur to anyone that fact checking is just as necessary, if not more so in the internet age.
We have plenty of *real* science issues that are worth discussing and even fighting for, yet we are flaming each other about unfounded conspiracy theories on blogs. Really, we need to use the little energy we have to motivating the science community to actually solve this – not throw each other or people who have stood by us under the bus.