Suddenly, cuckoo bananas!

Because I am having so much fun at mah conference, I missed my chance to plug a Q&A ninja/journalist Trine Tsouderos hosted with Paul Offit, vaccine inventor.

Im sorry you all missed the chance to participate (Im hoping most ERV readers are Respectful Insolence readers, so you all got the info that way). I mean, Im having so much fun interacting with people working with HIV-1 vaccines right now, and I get all giddy nuts about that, and you all could have gotten a taste of it by having the chance to interact with Dr. Offit.

I sorry :(

BUT!

On the bright side, the Q&A was recorded and its all online for us to read!

So I there I was, minding my own business in Starbucks, taking a second to check up on what I missed, “LALALALALALALALA IM READING DR. OFFITS COMMENTS HASING SO MUCH FUN LALALALALALA… wait wat?”:

[Comment From Jamie Deckoff-Jones MDJamie Deckoff-Jones MD: ]
Are you concerned that the current epidemics of ME/CFS, ASD and GWI are related to vaccines? These neuroimmune disease cohorts are all of mysterious etiology and share many clinical similarities: sensory and cognitive processing deficits, susceptibility to and inability to clear certain infections, an unusual susceptibility to stress, increased oxidative stress, glutathione depletion, methylation blocks, mitochondrial defects, high levels of heavy metals, inflammatory bowel issues, hormone abnormalities and a suspicion that vaccines are implicated in pathogenesis. The pathology in humans is extremely similar to what is known of simple retroviral infections in animals. We have evidence that xenotropic and polytropic MuLVs are infecting humans (Lombardi et al Science Oct 2009, Lo et al PNAS Sept 2010). Given the history of the use of mouse and chick embryo cells for vaccine production coinciding with the history of Epidemic Neuromyasthenia (as documented by Henderson and Shelokov, NEJM 1959), the known presence of animal retroviruses in those cells, and the documented ability of these viruses to infect human cells, aren’t you the least bit concerned?

I was expecting to see The Usual Suspects in the anti-vax movement, but I wasnt expecting to see a XMRV kook… but I suppose it was an inevitable union. Actually, its starting to look like the union was, shall we say, ‘predestined’.

See, Dr. DJ started a blog a while back, chronicling her personal experimentation with recreational antiretrovirals. Apparently for a while she was convinced she had Chronic Lyme Disease and was psychologically addicted to antibiotics, and now shes moved on to harder stuff.

I was so disgusted by her behavior I felt a personal responsibility to put information about antiretrovirals and their use in treating real retroviral infections on the intrawebz:

XMRV and antiretrovirals

This was her response:

Certain scientists have been particularly vocal against the use of antiretrovirals for XMRV. Scientists trying to tell doctors what to do. Why do they think that doctors or patients should care about their medical opinions? They need to do their work and stop trying to practice medicine. The real question is why do they care if patients try antiretrovirals for a retrovirus? Why wouldn’t they want to know if the drugs work?

*shrug* So, pretty clear that she has absolutely no understanding of why antiretrovirals are A Very Bad Idea, even if XMRV were unquestionably THE CAUSE of CFS. She doesnt want to know. She already Knows. So we are not dealing with a normal, rational human. We are dealing with a kook. A kook who is in a position of influence on a psychologically and physically vulnerable population, and is abusing that position of influence, which pisses me off. Because I am a lazy skeptic surrounded by critical thinking readers, I will now cease to interact with her on a rational level, and will now be quoting her for lulz:

Are we to believe this recombination event occurred only once and that a pathogenic MLV-related human retrovirus is only produced by one particular cell line? Told to us by some of the very scientists that said it was impossible? Anyone smell a cover-up? Much easier to destroy a seminal work than admit that there may in fact be a family of XMRVs. Careful reading of the Science paper shows that the monoclonal antibody used to detect XMRV envelope in Lombardi et al detects all known xenotropic, polytropic and ecotropic MLVs. Antibodies made by patients recognized specific envelope and gag proteins. PCRs were optimized for sensitivity, not specificity. And quite possibly there are many other recombinant animal retroviruses infecting humans as well, created in laboratories and injected into almost everybody in the industrialized world, because of arrogance.

Putting it all together, it seems quite plausible that batches of vaccines containing retroviruses that are infectious to humans have been going out for over half a century. Much of what I’ve written here has been known but ignored for a long time. The assumption was made that endogenous animal retroviruses couldn’t harm people. It’s becoming clear that this was a very incorrect assumption.

It is an old discussion, one in which the autism community has been embroiled for a long time. But the scientific community has chosen to believe that all those mothers of autistic kids are deluded, and don’t really know how or when their kids got sick. That they had normal kids and, within a few days of a vaccination were never the same, is just coincidence.

The press has been calling me recently. Why are vaccines such a hot potato? The big response to the subject exposes it as a sacred cow. What’s so controversial about a doctor saying that there is a chance that an unnecessary intervention may be harming patients and that, until we know more, the intervention should be held for people at risk? The automaticity with which doctors have come to prescribe vaccines is medically incorrect. We need to look at where we are now, not where we were when we started vaccinating Polio, Small Pox or Diphtheria. At this juncture, in my opinion, each vaccination should be thought about by a physician, in the same way prescribing a drug is. You don’t give drugs in batches to everyone. You consider each prescription carefully, for that patient, at that moment. That’s what is expected for every other prescription. Why should physicians suspend disbelief for this one therapeutic modality? A doctor is not supposed to hurt anybody, except that if he hurts somebody with a vaccination, that’s OK? Even if he already knows that this person has an immune dysfunction that hasn’t been studied with respect to vaccines? The patient has to live with the damage forever. Something is really wrong here. Doctors should think about that individual patient before ordering the shot. It shouldn’t be automatic if the patient has a history of CFS. What is the risk of worsening the disease from the shot? Or causing it in a family member? Risk to the individual, not the society.

The question. Did the conditions exist for the current epidemic of neuroimmune diseases to be the result of endogenous retroviruses present in animal tissues and used in the production of vaccines?

Cover-up or stupidity? I’m just a dumb ER doc and I’ve gotten this far with PubMed and a few scientist friends (who if asked will deny knowing me:). Though any detail of what I’ve written could be mistaken, and there is conflicting evidence, overall, it certainly seems to fit. People have written that they are concerned that I’m too invested in XMRV. This is not all about XMRV. If they prove tomorrow beyond a shadow of a doubt that XMRV is a lab contaminant and not present in humans, it doesn’t change a thing in terms of what needs to happen next. At the very least XMRV has brought attention to an international disgrace. If XMRV is buried under a mountain of negative studies, or if XMRV is truly not a human pathogen, millions of people still need treatment for neuroimmune illnesses that are consistent with simple retroviral infection.

The current epidemic of neuroimmune illnesses may be due to the introduction of simple retroviruses into the human population through the use of vaccines.

Yeah, Im totally lazy. Im just going to let those thousands of cuckoo bananas speak for themselves.

Its obvious to even the most casual observer that Dr. DJ is anti-vax, the way Lenny is an HIV Denier. She might not refute the utility of vaccination (I havent gotten the impression DJ understands how vaccines work or why we use them, so she hasnt delved into the science or epidemiological side of things), but she does have a laundry list of insane conspiracy theories. Likewise Lenny doesnt necessarily deny HIV-1 causes AIDS, but he thinks its creation was a government conspiracy.

If I were a legitimate scientific organization, I would not want to be associated with her in any way, shape, or form. I wouldnt even friend her on Facebook, for fear her insanity would taint my reputation.

Hey, speaking of Facebook!

Thanks to her completely self-unaware comment on Trines site and zero internet skillz, I saw on her Facebook page that she ‘likes’ an anti-vax group, ‘Autism Mothers’. ‘Autism Moms’ advertises for BioRay. BioRay is buddy-buddy with Mikovits and the WPI. Mikovits took time out of her busy research schedule to speak with Andrew Wakefield and Jenny McCarthy at AutismOne, while WPI is run by the Whittemores, a couple of folks who let their daughter pass up MMR (which youre supposed to get as a toddler) until she was 17, who now blames her ‘relapse’ of ‘CFS’ after she was ‘cured’ by ‘yoga and homeopathy’ on the MMR. The WPI, a ‘legitimate scientific organization’ just hired Dr. DJ.

WHAT A CRAZY RANDOM HAPPENSTANCE!

WEIRD COINCIDENCES, HUH GUISE?

:-D

Comments

  1. #1 Andrea
    March 22, 2011

    You idiot I was vaccinated before I just didn’t have my records for college. I’m not anti -vax at all.

  2. #2 Lss
    March 22, 2011

    I have CFS and am stuck between two extremes; the vocal minority of patients that insist that this is all one big conspiracy and a majority of doctors who do not accept CFS as a legitimate illness or downplay its seriousness. It is a total mess and I am frustrated by the actions and statements of the Dr. Mikovits and Dr. DJ. If you find the statements of Dr. Mikovits ridiculous just think how frustrating it must be to CFS patients that deal with this illness daily and just want much more solid credible research done on their illness.

    The reason I am writing this comment is I want to make it clear to readers of this blog that a majority of CFS patients are not crazy, are not anti-vax, do not believe in these insane conspiracy theories, and just want science to put more resources into figuring out what causes this illness.

  3. #3 Poodle Stomper
    March 23, 2011

    Could we pitch the XMRVers against the AIDS deniers? I mean the WPI wants people with CFS on ARVs (which is clearly the true cause of AIDS) so doesn’t that mean that WPI is really in on the ginormous Big Pharma AIDS conspiracy?

  4. #4 Charl
    March 23, 2011

    Having CFS/ME and being anti-vaccination seems nutty to me. Why would you want to leave an already weakened immune system at the mercy of fatal/debilitating infections such as measles, TB etc? And why would any parent want their sons to run the risk of infertility following mumps? I know people who didn’t get the MMR because of the previous health risk associated with it (ie that it might trigger epilepsy in the children of epileptics) and trust me, a testicle swollen to the size of a tennis ball is not something you ever want to see.

  5. #5 In Vitro Infidelium
    March 23, 2011

    @ Poodle Stomper
    so doesn’t that mean that WPI is really in on the ginormous Big Pharma AIDS conspiracy?

    The doctrine of the divine exception applies – “those who are pure in heart are untainted by the evil of the world”. WPI may have to get down and dirty with ‘poisons’ but they are to be trusted because their mission is the true alleviation of suffering. To be fair though, most people with CFS who are supporters of WPI see XMRV as a new ‘HIV’ and frequently invoke ‘denialism’ as the reason that CFS remains untreatable. It’s just that the WPI supporters don’t want to acknowledge the inconsistentcies in the WPI firmament and are happy to go along with the neuro-immune package which happens incongruously to include ASD. The anti-vax/anti-denialism dichotmy is actually writ large within the M.E/CFS affected population (see @Charl below), though discussion about it is avoided by all but the most foolhardy.

    @Charl
    Having CFS/ME and being anti-vaccination seems nutty to me. Why would you want to leave an already weakened immune system at the mercy of fatal/debilitating infections such as measles, TB etc?

    There’s absolutely no evidence that a compromised immune system is a characteristic of M.E/CFS; that isn’t to say that some people with M.E/CFS do not have compromised immune systems, but the contention that it is a characteristic of the condition has never had evidential support.

    Most cases of M.E/CFS develop in adulthood so vaccination against common illnesses is not usually an issue in developed countries where most cases have been identified. Travel abroad could require vaccination for adult suffferers but the nature of the illness means only a very few people will have to deal with this, most being too ill to travel any distance. Annual influenza vaccination is something M.E/CFS sufferers do have to address, and while some of us find it helpful to avoid getting flu, others find the effect the vaccine as bad the real thing.

    There is a notable percentage of M.E/CFS suffers who see the onset of illness to have directly followed vaccination. Of course ‘Coincidence isn’t necessarily cause’ applies, but if M.E/CFS is considered to be a heterogenous condition then there’s no reason why illness in subset of sufferers should not have its origin in a vaccine induced reaction.

    IVI

  6. #6 Mobius
    March 23, 2011

    Starbucks…coffeeeeeeeeeeeeeeeeeeeeeeee.

    LOL

    In Sluggy Freelance, the current story arc has the city revolting because they ran out of coffee.

  7. #7 Jamie Deckoff-Jones MD
    March 23, 2011

    That was your best shot? When certain people disagree, you know you are on the right track:). And thanks for the heads up about FaceBook. I am a newbie and it is definitely creepy.

    Jamie Deckoff-Jones
    http://treatingxmrv.blogspot.com/

  8. #8 Jamie Deckoff-Jones MD
    March 23, 2011

    Trine Tsouderos, with whom I have a cordial relationship, invited me to yesterday’s chat with Paul Offit. Here was my question to him:

    Are you concerned that the current epidemics of ME/CFS, ASD and GWI are related to vaccines? These neuroimmune disease cohorts are all of mysterious etiology and share many clinical similarities: sensory and cognitive processing deficits, susceptibility to and inability to clear certain infections, an unusual susceptibility to stress, increased oxidative stress, glutathione depletion, methylation blocks, mitochondrial defects, high levels of heavy metals, inflammatory bowel issues, hormone abnormalities and a suspicion that vaccines are implicated in pathogenesis. The pathology in humans is extremely similar to what is known of simple retroviral infections in animals. We have evidence that xenotropic and polytropic MuLVs are infecting humans (Lombardi et al Science Oct 2009, Lo et al PNAS Sept 2010). Given the history of the use of mouse and chick embryo cells for vaccine production coinciding with the history of Epidemic Neuromyasthenia (as documented by Henderson and Shelokov, NEJM 1959), the known presence of animal retroviruses in those cells, and the documented ability of these viruses to infect human cells, aren’t you the least bit concerned?

    His answer was non-responsive. As is your attack of what I have written.

    Jamie Deckoff-Jones MD

  9. #9 MI Dawn
    March 23, 2011

    @Dr Deckoff-Jones: since many of the XMRV articles I have read show that the finding is a contaminent in almost all cases, I don’t believe it has a clinical effect. I have many, many friends who suffer from ME/CFS. Most of them cope with rest, exercise, healthy diet, and occasional medications. They don’t try to cure a disease they don’t have by using antiretrovirals.

    And why on earth do you keep quoting an article from 1959? For pete’s sake, that article is older than ME, much less you. Don’t you think medicine has progessed a bit since then? And I am not a believer in chronic Lyme disease, either. Not when you discuss with the believers how they got the disease (killer mosquitoes? sex with their spouse?).

    I believe in science-based medicine, I have vaccinated my children with all vaccines that were available for them (they were born before the CP vaccine so both had to suffer through it. I was just SO thrilled to give narcotics to a 5 year old due to such pain from the pox – she was covered from head to toe, mouth, genitals, oral, vaginal, rectal- but it’s all natural, so it’s all good, right? Except that 15 years later, when tested, she has no immunity to CP so got the vaccine).

    What you have written, from what I read from your site, is not based in science. It is based on your personal bias and cherry picking.

  10. #10 RRM
    March 23, 2011

    Jamie, I must say that you provide us with pretty convincing data for Simon Wesseley’s theories, i.e. that having CFS means that there is something wrong with you mentally.

  11. #11 Levi
    March 23, 2011

    Interesting discussion. I am not anti-vax, but the topic of vaccine safety is very important, and the science around vaccines should be rational, transparent, and forthcoming.

    ERV, I did a search on your site, and looked for a response to this research:
    http://www.frontiersin.org/virology/10.3389/fmicb.2010.00147/abstract

    I found nothing. You did a small piece on another paper about retroviral adventitious agents in dog vaccines, and in that article you stressed the importance of screening so your dog Arnie would be safe.

    Many vaccines were produced before retroviral screening was developed. Have researchers gone back and looked in the vaccine stores of old innoculations for murine retroviruses, which according to Dr. Offit are “ubiquitous” in most labs? If so, what did they find?

  12. #12 Jennifer
    March 23, 2011

    I want to echo @Lss in comment #1. Most CFS patients are not anti-vax and do not believe in insane conspiracy theories about vaccines or a movement to hush up the true cause of CFS.

    What we do believe is that more quality research on CFS is desperately needed. We need an objective diagnostic test and effective treatments. We want to recover our health. Anything that jeopardizes achieving these goals is a danger to all CFS patients.

  13. #13 William Wallace
    March 23, 2011

    Just dropped by to drop some fodder for you. Anti-vaccine doctor meets with Somalis.

    Remember, I am against vaccines for my children, but I want everybody else to vaccinate their children.

  14. #14 The Analyst
    March 24, 2011

    Strange. I asked a very similar question on another blog here (relating to autism), and “ERV” replied with misinformation.

    I’m not on anyone’s side, and I have no friends here (thank god), but asking questions about vaccines is apparently a big no-no in this community.

    And when you get a response from a graduate student about an ERVs with misinformation, it’s quite laughable.

    And then they want you to give them a reference. HAHA. Go study more!

    I shall quote “ERV” relating to Autism and ERVs:

    ERVs–>disease are not the result of genetics. The diseases they are involved with are not associated with the genes, but disregulation of the genes via disregulation of epigenetic control. Thus, identical twins and non-identical twins and siblings raised in the same household are all at the same risk-level. Its the common environment, not the common genetics..

    Well, at least he got the first two sentences correct.

  15. #15 In Vitro Infidelium
    March 24, 2011

    @ Jamie Deckoff-Jones MD

    Great technique there – build a construct that defies reasoned response, then blame others for not responding. I have two questions:

    1. Is there anywhere peer reviewed published, a clinical description of ‘neuro-immune disease’ ?

    2. Why do you/WPI presume to ‘disease label’ someone such as Temple Grandin, without any attempt to engage with the patient population you are claiming to seek a cure for ? Is the WPI approach to ASD not every bit as appropriative as Wessley, White et al have been toward CFS ?

  16. #16 MI Dawn
    March 24, 2011

    @TheAnalyst: asking reasonable questions about vaccines and vaccine safety is not a “no-no” either here or on RI or on LBRB. However, twisting words and trolling is not accepted ad you will be jumped on. And yes, you were asked for your references so that we could see if you wer cherry picking or giving the reference in its true sense. You refused to give the references and ran away.

    The Analyst is…..BRAVE SIR ROBIN!

    And, troll, if you had any sense at all, you might have noticed that ERV is a woman.

  17. #17 MI Dawn
    March 24, 2011

    Please excuse the typos. Haven’t had my coffee yet.

  18. #18 Charl
    March 24, 2011

    An XMRV study that used a lot of the Mikovits techniques to find the virus in prostate cancer, healthy donors and CFS patients, but came up negative: http://www.retrovirology.com/content/pdf/1742-4690-8-20.pdf

  19. #19 titmouse
    March 24, 2011

    Remember, I am against vaccines for my children, but I want everybody else to vaccinate their children.

    Advertising your position may normalize it among the population, which is a bit self-defeating.

  20. #20 ERV
    March 24, 2011

    Lss, Jennifer– Always appreciated reminders, thanks :)

    Charl, IVI– I think Charl was granting the premise that some people (maybe CFS) have ‘weird’ immune systems. Even granting that premise, it does not logically follow that highly controlled vaccine is ‘worse’ than wild infection. While there is a contingent of the anti-vax community that glorifies illness, I dont think that is DJs point– I dont think she wants the vaccines or the disease. She wants everyone else to take the vaccines so she can be protected via herd immunity without the risk of disease or the basic risks of vaccination, like WilliamWallace.

    CFS is just like TOTALLY WORSE THAN leukemia and AIDS, you see *pathetic-cough* *pathetic-cough* so they should be exempt too.

    Levi– I wrote about that a long time ago– LINKY!! Once again, I will be happy to grant the premise, though. Lets say XMRV contaminated vaccines. The animal studies showed that and extremely high dose of purified XMRV was not enough to even induce symptoms of primary viral infection in animals, certainly no discernible disease. 10^6 viruses, nothin. You do the same experiment with 10^2-10^3 HIV viruses, animal is dead. Having that much virus in a vaccine would not go unnoticed, even the most primitive assays measuring vaccine protein content (aka WHY IS THERE 10^6 MORE PROTEIN IN THIS VIAL THAN THERES SUPPOSED TO BE???). If we want to talk about quantity of infectious virus at functionally ‘invisible’ concentrations, human cells do not want to become infected, and the ones that do get infected produce non-functional virus.

    I am more concerned about the time I have to take off work to stand in line to get flu shots etc than I am concerned about XMRV infection via said immunization.

    TheAnalyst– My comment is basic epigenetics. If you want to argue with it, youll have to take it up with your histone tails and CpG islands.

    DJ– Im sorry. I should have used smaller words in this post. No one is ‘refuting’ you. No one is writing ‘rebuttals’. Youve made it clear that there is no point in anyone wasting their time with that, so we are laughing until the lulz mine collapses (or in this case, till the liver/kidney failure kicks in).

  21. #21 Azkyroth
    March 24, 2011

    Trine Tsouderos, with whom I have a cordial relationship

    nah, too easy.

  22. #22 Azkyroth
    March 24, 2011

    Are you concerned that the current epidemics of ME/CFS, ASD and GWI are related to vaccines?

    Depends. Are you “concerned” that the CIA is controlling your mind with rays beamed down from satellites?

    …okay, probably a bad example, but still…

    The “vaccines cause autism” thing is DEAD. It is deader than phlogiston, deader than geocentrism, deader than the four humors (wait, you probably give credence to those too). Please stop masturbating with the corpse and let’s put at least a tiny fraction of that energy into finding ways to help people with the neurological differences known as “autism spectrum disorders” live happy, productive lives in society.

  23. #23 The Analyst
    March 24, 2011

    Depends. Are you “concerned” that the CIA is controlling your mind with rays beamed down from satellites

    Mind conttol isn’t too far-fetched. If they did it in the past here in the United States, who is to say they aren’t experimenting now?

    While I don’t feel too concerned, it wouldn’t alarm me if something of the sort was happening today.

    http://en.wikipedia.org/wiki/Unethical_human_experimentation_in_the_United_States#Psychological_and_torture_experiments

    http://en.wikipedia.org/wiki/MKULTRA

  24. #24 No Gaps Here
    March 24, 2011

    Was hoping to find robust discussion about this, but instead get to offer “breaking news” from Dr. DJ’s employer: http://www.wpinstitute.org/news/docs/DirTransRes.pdf

    “Dr. Mikovits, current Research Director of the Whittemore Peterson Institute (WPI), has been named the new Director of Translational Research. “Dr. Mikovits remains an integral part of the WPI as she focuses her considerable talents assisting its strategic partners and collaborators in the translation of the most current research. She will engage in activities which support and promote the development of more effective treatments for all patients with neuro‐immune diseases.” said Annette Whittemore, President of WPI. The WPI’s research program will proceed with its critical basic research program under the skilled guidance of Dr. Vincent Lombardi, new Director of Basic Research and lead author of the seminal study on XMRV and CFS. ‘Drs. Mikovits and Lombardi represent the best that scientific research can achieve when it is done with integrity and compassion and we thank them both for their extraordinary work.’”

    Say what?

  25. #25 The Analyst
    March 24, 2011

    CFS is just like TOTALLY WORSE THAN leukemia and AIDS, you see *pathetic-cough* *pathetic-cough* so they should be exempt too.

    It depends what you mean by worse. CFS doesn’t kill you (not quickly anyway), but the disability can compare to that of an AIDS patient with 3 months to live.

    And some are completely bed bound. It’s a very serious disease.

    AIDS is a manageable condition, so I would say AIDS patients are definitely living better quality of life. Even if there weren’t drugs for AIDS, what would be worse? Intense pain and suffering for 25 years, or a quick death? I don’t know the answer. That’s for you to decide.

    If you want to live in a state of denial, that’s your problem. I guess since the disease doesn’t typically attack motor neurons and since many patients look ok and don’t drop dead, it’s much harder for an observer to see the extent of the physical, neurological, and neuropsychiatric disability.

  26. #26 In Vitro Infidelium
    March 25, 2011

    She wants everyone else to take the vaccines so she can be protected via herd immunity without the risk of disease or the basic risks of vaccination,

    I was probably just being too generous, either that or my eyes had glazed over by the second paragraph, or maybe I got caught by a bait and switch: “CFS = neuro-immune disease : neuro-immune disease is caused by vaccines = health anxiety (my nth cousin removed had – fill in disease of choice) so my family is susceptible to vaccine borne illness therefore exempted from any vaccination programme.”

    Except in circumstances where there are major public health implications I think we have to allow adults to make informed choices about vaccinations for themselves, – but non vaccination should be accompanied by expectation of restrictions such as not working with children, elderly people, pregnant women etc.

    Pathetic coughing aside (my coughs are manly and lung wrenching suggestive of my aorta bursting at any moment) there seems no reason not to consider the cost/benefit of vaccination for annual flu on a patient by patient basis. In the UK the shot isn’t even available via the NHS except for health workers and vulnerable people. Adult vaccination in cases where the usual childhood shots have not been given is a more complicated issue and lifestyle has a huge impact – the house bound and bedridden hardly present major concerns over disease communicability and insisting they have interventions which may make them even more ill seems perverse.

  27. #27 let me infect you, so you know what's up!
    March 25, 2011

    Brain Demyelination/lesions AIDS Yes ME/CFS Yes

    Chronic sore throat Flu like illness AIDS yes ME/CFS yes

    Swollen lymph nodes AIDS yes ME/CFS Yes

    Cognitive problems AIDS yes ME/CFS yes

    Skin Problems AIDS yes ME/CFS yes

    IBS and other stomach problems AIDS yes ME/CFS Yes

    Cancer/Leukimia/Lymphoma AIDS yes ME/CFS Yes

    Weird tumor
    spleen,liver,brain,testicular AIDS yes ME/CFS yes

    Heart Failure AIDS yes ME/CFS yes

    Many active viruses AIDS yes ME/CFS yes

    White thrush AIDS yes ME/CFS yes

    Swollen tongue with teethmarks around it AIDS yes ME/CFS yes

    Fatigue AIDS yes ME/CFS yes

    Seizures AIDS yes ME/CFS yes

    How blind and gullible do you have to be, to not be able to see that ME/CFS is also caused by an HIV like virus? ME/CFS is caused by a retrovirus, we have known this since the early 80s when ME/CFS brain MRIs were taken and they looked exactly like AIDS patients, in the early 90s De Freitas found a retrovirus in the blood of ME/CFS patients and the CDC didn’t even bother paying attention to her, now the WPI has found the XMRV virus which is a retrovirus which was suspected all along and people still can’t admit that ME/CFS is caused by just that.,

    How blind and dumb are you?

    How can you tell me that is all in my head ?when two of my friends that have HIV have the very same health problems that I do but they do much much better then me because they have meds and I don’t.

    To the writer of this blog, let me come to you and infect you with my XMRV, i don’t want it, can i give it to you?

    If you are 100% sure that XMRV does not exist let me come to you and give you a shot of my blood or have unprotected sex with me, then you will know what XMRV really does and how very real and serious it is….please reply to me don’t be a coward, if you have the balls to call me crazy and say there’s something wrong in my head, have the balls also to get some of my XMRV…i will come to you i will travel to wherever you are i will even pay you.

  28. #28 Levi
    March 25, 2011

    “Let me infect you”

    Please go away with your irresponsible and damaging statements. Such statements are a good part of the reason why research is stalled on a number of unexplained illnesses because of failure to attract scientsists. ERV has already been subjected to stalking and hassassment, and you are way over the line. Repeat, go away please.

    ERV,
    Thanks for humoring me, a non-scientist with a response and a linky. I actually read that linky article before I posted my question, Your linky refers to a question from a non-scientist like me. My link refers to peer reviewed scientific research that you have not yet commented on, but seems right on point.

    Like others, I was hoping for a more robust discussion about the possible ramifications of retroviruses as adventitious agents in vaccines. For instance could you talk about the use of fermenters in the production of vaccines? Why are disposable fermenters being used now for some vaccines? Is there some possible problem with sterility?

  29. #29 Ethyachk
    March 25, 2011

    @ let me infect etc…

    How blind and dumb are you?

    The unintended irony of your statement is just amazing.

  30. #30 Charl
    March 25, 2011

    I think one of the arguments for not worrying about evidence of animal viruses in vaccines goes thus:

    PCR picks up DNA from those viruses – if this is the only test they’ve done, then there’s nothing to suggest you’ve got more than that fragment of DNA (ie it doesn’t show that you’re passing along whole, replication-competent virus).

    If whole virus is being transferred (like SV40) you need to know if it can actually cause disease – a much more difficult point to prove/disprove. You also want to know if that virus is a pathogen that’s successfully jumped the species barrier before – so for viruses grown in chicken eggs, I’d go looking in chicken farmers, and workers who grew the virus in the eggs. Do they show evidence of infection with this virus? Are any diseases over-represented in this population/is their any epidemiology to support a connection between this exposure risk factor and a disease?

    Increasingly, vaccines are being developed in a synthetic way (eg Hep B vaccine is produced by yeast cells expressing a Hep B envelope protein?) so that we don’t have to worry about these factors, but it’s not always possible.

  31. #31 let me infect you
    March 25, 2011

    @ levi..i could care less if research is stalled i don’t give a crap, my life is ruined and there’s nothing i can do or anybody can do about it, research is stalled because the CDC know they fucked up big time almost 3 decades ago, now they know their in too deep, they know damn well that if this XMRV pans out their gonna lose credibility for ever that’s why they are trying their hardest to make it go away.

    Now that im talking about this let me tell you all this whether you believe me or not i don’t care but this if for real, i lived 19 years of my life in Latin America in 3 different countries before i came back to the states and i never ever saw one kid with autism not even one, American people have been led to believe that having a kid with autism is normal IT IS NOT, or is it maybe that Americans are made with crappy cells? could this be the case?

    Doesn’t strike you as odd that most ME/CFS patients have kids with autism?

    Could it be that parents have a virus that they are giving to their children?

    anyways tired of typing, i have some unfinished business to take care of, im looking for my next victim so far i have only infected 4 girls with this and they are all accusing me of giving them HIV but of course their test and my test keep coming back negative, but yet my XMRV test is positive, Jee i wonder if this XMRV thing is real or all these symptoms are just in my head and now they are all in the head of these poor girls…by the way if you ever need a blood transfusion DON’T GET ONE because you just might get my blood, if you get sick from it don’t blame me because apparently there’s nothing wrong with me and as long as they keep telling me there’s nothing wrong with me i will continue doing what any exceptional citizen would do, Donate blood every two weeks and what do you know? they even pay me for my plasma ,,, sweet deal..

  32. #32 ERV
    March 25, 2011

    Got enough energy to sleep around.

    Doesnt have the energy to get a damn job.

    What a miserable existence, lol.

    I direct readers once again to Lss and Jennifers comments.

  33. #33 The Analyst
    March 25, 2011

    Such statements are a good part of the reason why research is stalled on a number of unexplained illnesses because of failure to attract scientsists. ERV has already been subjected to stalking and hassassment, and you are way over the line. Repeat, go away please.

    Ok, so tell me why research was stalled for about 25 years when it comes to CFS?

    It couldn’t be the ignorance of government, scientists, and physicians. Right?

    And please note, while I am never out to make friends on teh interwebs, I am not defending the tone of “let me infect you”.

    However, that being said, it is understandable why a patient in his/her position would be angry. However, people will NEVER hear you if you express yourself without so much vulgarity.

    I do apologize for the physicians and researchers that don’t believe in your condition, and I despise the researchers that waste grant money trying to “prove” a physical/neurological condition as psycholgical. As I said it my previous post, it is a very real and serious condition. Like ERV, I don’t deal well with stupid people.

    And that being said, XMRV is still up in the air. ERV is convinced it’s a contaminant, but there is too much conflicting information right now, so I claim I don’t know. And even if CFS is not associated with XMRV, I do hope research continues to move forward to finding the cause.

    Just tone it down a bit.

  34. #34 Levi
    March 25, 2011

    Analyst,
    My my take as to why research was stalled for about 25 years when it comes to CFS is that in the 1980′s when the “Yuppie Flu” was being reported in the mainstream media, a number of well meaning scientific researchers were quick to jump on Epstein Barr virus as the causative agent of the illness, which was known by many names in the literature. Indeed, if you tested the blood of fresh “yuppie flu” victims, you often found significantly elevated titers of EBV as well as cytomegalovirus and other viral goodies. Usually those titers went back down over time, even if the nastiest symptoms of what was soon to be named “CFS” persisted in patients. The new name was a response to get away from the tainted “Chronic EBV Syndrome” moniker.

    “EBV” Syndrome went the way of the Dodo bird and the researchers involved in the EBV imbroglio were quasi-disgraced and cut off from future grant money unless they went on to study something else like AIDS. This was the case for Jay Levy of UCSF, who at one time was looking hard at CFS in the lab.

    With no valid tests or biomarkers for CFS, and a large influx of patients due to all of the various and non-specific definitions of newly coined CFS, things were left wide open to steer a large number of different unexplained illnesses into the swirling catchbasin that has become known as CFS.

    At this point, many seriously ill patients realize that if XMRV does not pan out scientifically, then the entire field will become “radioactive” to scientists. Then, if there actually is is a retrovirus any actually ANY pathogen the causes CFS, folks will get to wait yet another 25 years before scientists forget how problematic studying CFS can become and try once more to solve the mystery.

  35. #35 suddenlyfromtheleft
    March 25, 2011

    About AIDS deniers vs XMRV kooks. Some of the AIDS deniers are XMRV kooks. Jeanne Bergman made this fabulous comment at CROI a few weeks ago. I’m not going to say it as well, but the point was:

    You have some HIV positive people who insist HIV doesn’t exist and have always refused ARVs because they’re supposedly poisonous. Then along comes XMRV, probably a contaminant, and these same people decide XMRV must be responsible for their medical problems. In fact, XMRV is SO monstrously bad that they’re even willing to take ARVs to stop an infection that probably doesn’t exist.

    It’s full-circle craziness. But at least some HIV-positive deniers are now taking ARVs, I suppose.

  36. #36 The Analyst
    March 25, 2011

    About AIDS deniers vs XMRV kooks. Some of the AIDS deniers are XMRV kooks. Jeanne Bergman made this fabulous comment at CROI a few weeks ago.

    Oh please!

    That is a terrible, insensitive comment. How the hell is it fabulous? It really shows arrogance and ignorance, that’s for sure. And if you say that’s a great comment, I feel that that reflects your personality (and lack of compassion) as well. I just hope and pray you aren’t a physician. I can’t believe such a kooky comment was said by an AIDS kook. I don’t know who she is, or how prominent she is, but she keep spewing that BS, she will eventually be scoffed at by everyone, and she will be the kook.

    I am not sure who you are referring to the AIDS denial XMRV kook, but that is very demeaning to the patients who suffer each and every day. And that statement is baseless as far as I am concerned. Sounds like it was more of an emotional statement than anything. She should look back at history and remember the crap and BS AIDS patients had to put up with. Shame on her.

    I feel sick to my stomach sometimes, and if you really meant what you said, I am about to barf.

  37. #37 let me infect you
    March 26, 2011

    what makes you think i don’t have a job?

    I have a really good job actually, that’s one of the reasons is so easy for me to sleep around, i have a good income, i have my own house and i drive a $60,000 car, girls are easy to impress it is a shame but it’s the reality.

    I don’t have CFS just get sleepy a lot, but with my type of job i can’t afford to get tired, i wouldn’t be able to do it.

    I would say i have ME but real and true ME, a mild form of encephalitis, i have brain demyelination, terrible light and sound sensitivity, i have had one seizure, i have pain in my spleen, liver, pancreas and testis, i have white thrush, swollen tongue with teethmarks around it, terrible IBS and i have multiple eruptive dermatofibromas which normally people with HIV get, i have tender lymph nodes and by now i have had a sore throat for 3 months straight and the worst thing of all i have brain fog every single day.

    all of this and i still work 45 to 50 hours a week, don’t go judging me i could possibly quit and live at least ten years off my savings and my 401 k but then i would just feel like a totally useless piece of crap.

    how else could i afford my $600 a month treatment? house and car payment and the rest of responsibilities?

    I have to have a job for me there’s no other way around this, the day i can’t work the day i will kill myself because living like this is miserable and with out the treatment i would not wanna be living.

    have any of you ever visited the sites poz.com or thebody.com?

    i cordially invite you to see these sites and to browse their forums for a few days, you will then be shocked of how many people have been sick for months some even years thinking they got HIV after unprotected sex but they keep coming back negative for many many months and a lot of them have tested positive for XMRV.. this is a no brainer, there’s is something else out there, these people keep testing for HIV HTLV and all comes back negative, but when they text for XMRV is positive and it all happened after unprotected sex, which was kinda my case when that condom broke.

    You will also be shocked to see how many people go to the Red Cross to donate blood out of desperation, after months of multiple HIV and HTLV tests keep coming back negative, after MRIs showing brain demyelination/lesions after having all these HIV like symptoms and getting no answer from anybody or anywhere they just go to the Red Cross to donate blood because they think that the Red Cross has the latest technology and will catch any pathogen, but of course the donations are always approved and whatever these people have that resembles HIV is going in the blood supply.

    This is not me just rambling this is for real , when i first started getting sick after this condom breakage i thought for sure it was HIV because i had all the classic ARS people get when they get an HIV infection even my close friend who has HIV kept telling me it was an HIV infection because all my same symptoms he got when he got infected.

    This led me to browse and open up accounts at both these sites poz.com and thebody.com because i was 100% convinced i had gotten HIV in fact if i didn’t know XMRV is out there i would still be thinking i have HIV.

    I was at these sites for at least 6 months and every single day you see people with true HIV like symptoms that keep coming back negative and like i said out of desperation people recommend to each other to go donate blood.. shocking but true..

    Don’t get me wrong i didn’t have this attitude at first because i thought this XMRV thing was IT and research was gonna move forward, actually i still think it is, i got tired of sending countless emails to the Red Cross warning them of whats going on with people in these sites and how they go donate blood all the time.

    tired of sending countless emails to the CDC,NIH, national and local Red Cross, tired of calling all these agencies to tell them what’s going on, i even wrote a letter to my state senators and i even sent a message to the white house, i never got a response from anybody not even one.

    so i say of they don’t care about what’s going on, what would i..

    what’s even more shocking is that doctors all over the country specially infectious disease guys get people all the time, with HIV like symptoms and as soon as the test negative they wanna send them to see a counselor and/or tell them to take a vacation.

    it is shocking to me how this has been going on for so many years and people are still being ignored, how can somebody tell me that there’s nothing wrong with me after MRIs show brain demyelination and after i keep telling my doctors that it was something i got sexually transmitted, how can they say is all in my head? can somebody scare themselves into brain demyelination? because that’s what doctors all over the country seem to think, idiots.

  38. #38 suddenlyfromtheleft
    March 27, 2011

    Here’s the thing. XMRV kook does not equal CFS patient. XMRV does not equal CFS. Contamination does not equal disease association. Association does not equal biomarker. Biomarker does not equal causation. My words do not equal Jeanne Bergman’s words. I said kook, Bergman did not. An XMRV kook is someone who believes XMRV is the cause of medical problems despite the evidence. An AIDS denialist is someone who believes HIV is NOT the cause of medical problems despite the evidence.

    There is hardly any evidence anyone is infected with XMRV. There is even less evidence, zero in fact, that it causes a disease. As far as anyone knows, nobody is suffering from XMRV each and every day.

    People are suffering with CFS each and every day. People are suffering with AIDS every single day. Both CFS and AIDS patients need evidence-based treatments. Fantasies from people who don’t believe in a real virus and believe in a kind-of fake virus will not help them.

  39. #39 The Analyst
    March 28, 2011

    Here’s the thing. XMRV kook does not equal CFS patient. XMRV does not equal CFS. Contamination does not equal disease association. Association does not equal biomarker. Biomarker does not equal causation. My words do not equal Jeanne Bergman’s words. I said kook, Bergman did not. An XMRV kook is someone who believes XMRV is the cause of medical problems despite the evidence. An AIDS denialist is someone who believes HIV is NOT the cause of medical problems despite the evidence.

    There is hardly any evidence anyone is infected with XMRV. There is even less evidence, zero in fact, that it causes a disease. As far as anyone knows, nobody is suffering from XMRV each and every day.

    People are suffering with CFS each and every day. People are suffering with AIDS every single day. Both CFS and AIDS patients need evidence-based treatments. Fantasies from people who don’t believe in a real virus and believe in a kind-of fake virus will not help them.

    Right. But such a comment from CROI is very unprofessional.

    Speaking of which, after looking up CROI, there were only contamination scientists? What the hell. Contamination or not, all sides need representation. The ones that don’t think it was contamination weren’t invited? That’s what I read. That doesn’t look like science. That looks like politics to me.

    Without seeing two sides, are you expected to form an opinion or be indoctrinated? Sure, the contamination theories may be very convincing, but that’s not my point. It sounds like they are more interested in self-serving science and shoving pie in the face of those who may have reasons to believe it’s not contamination.

    Science is going crazier than I thought. Ok, science isn’t crazy. People are crazy.

    And quoting my other post about that comment:

    It really shows arrogance and ignorance, that’s for sure. And if you say that’s a great comment, I feel that that reflects your personality (and lack of compassion) as well.

  40. #40 RRM
    March 28, 2011

    “That’s what I’ve read.”

    You have also read that Judy Mikovits has some brilliant XMRV papers in her drawer that are just not getting published because of political reasons.

    On the other hand, I have read that the pro-XMRV scientists failed to show up at CROI and that the single paper by Mikovits that was rejected just was’t good science.

    But hey, why accept the most logical conclusions when large scale scientific misconduct and conspiracies can also explain the situation – as they always can, by the way…

  41. #41 daedalus2u
    March 28, 2011

    Is anyone in the pro-XMRV crowd claiming they were not allowed to attend CROI?

  42. #42 herr doktor bimler
    March 29, 2011

    Posted by: let me infect you
    Goodness me. Whatever did Munchausens people do before the Internet?

  43. #43 Charl
    March 29, 2011

    A very, very brief paper (mainly because I think getting the numbers to do these kinds of studies must be nigh on impossible) but “adverse” reactions to vaccines (and by adverse they mean fever, rash and swollen glands) is probably down to your own genetics rather than something eeeevillllll in the vaccine. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2843136/pdf/nihms179348.pdf

  44. #44 RRM
    March 29, 2011

    Two more negative studies today:

    http://www.retrovirology.com/content/8/1/23
    http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0018096

    Especially the Retrovirology paper seems interesting (although the conspiracy theorists will probaly immediately ignore it due to “evil” Hue and Towers being listed as authors). They screened tissue from prostate cancer patients for XMRV, didn’t find anything, but…did find some MLV-like sequences (like Lo/Alter, remember?). Upon further investigation (i.e. screening for mouse DNA) it turned out to be a large scale conspir…I mean contamination.

  45. #45 Charl
    March 30, 2011

    Mmmm, I likes me some wild speculation for lunch: http://download.thelancet.com/pdfs/journals/laninf/PIIS1473309911700810.pdf

  46. #46 suddenlyfromtheleft
    March 30, 2011

    Yeah, great Lancet letter. I don’t get the whole “well so what if it’s contamination, that’s just the PCR! We have LOTS of other evidence.” If your PCR was contaminated, you should think about what could have caused those other kinds of positives, like non-specific antibody binding. It’s like, if I test false positive for HIV antibodies by ELISA but virus isn’t detectable in repeated PCRs and other methods are negative too, Judy Mikovits is going to tell me I really have HIV?

  47. #47 dany
    March 31, 2011

    What could this mean? Any ideas?

    http://www.retrovirology.com/content/6/1/86

  48. #48 RRM
    March 31, 2011

    Wackos think it means: viruses can easily jump to humans (and thus it supports the hypothesis that XMRV is real).

    It actually means: viruses can easily spread among labs (and thus it supports the hypothesis that XMRV is a contaminant and is floating around in some labs, screwing up their results).

  49. #49 John
    April 1, 2011

    So how about a comprehensive attempt at debunking? Anyone feel up to it?

    “Nevertheless, the paper by Lombardi and colleagues that began this debate provided solid evidence based not only on the molecular identification of the virus, but also on immunological responses of the host (virus-specific antibodies), viral expression in patients’ peripheral blood mononuclear cells (flow cytometry), and an infection model (infection of cultured human cells from patients’ samples). Recently, a model of rhesus macaques enforced the evidence for the infectious potential of XMRV. The immunological and infection evidence cannot be explained by nucleic acid contaminations.”
    http://download.thelancet.com/pdfs/journals/laninf/PIIS1473309911700810.pdf

    So according to that guy there are 4 parts to the Science study-

    1. Molecular identification of the virus,

    2. Immunological responses of the host (virus-specific antibodies),

    3. Viral expression in patients’ peripheral blood mononuclear cells (flow cytometry)

    4. and an infection model (infection of cultured human cells from patients’ samples)

    So alternate explanations could be- #1 would be PCR contamination, #2 would be non-specific antibodies, #3 don’t know and #4 don’t know? Anyone care to offer a comprehensive attempt at debunking? Thanks.

  50. #50 John
    April 1, 2011

    #45, it means what the previous poster stated, namely that viruses can easily spread among labs.

    What’s even more relevant to the XMRV debate is that Dusty Miller showed in 2009 that a common cell line, 22rv1, was basically doing the exact same thing as the ‘biosafety level 2 retrovirus’, ie the 22rv1 cell line had been producing the exact same XMRV as was described in the CFS and prostate cancer studies since it’s creation in the mid-nineties yet no one knew about it. The ‘Biosafety level 2′ virus was intentionally created and spread accidently, XMRV was accidently created and accidently spread.

    ‘Multiple Integrated Copies and High-Level Production of the Human Retrovirus XMRV (Xenotropic Murine Leukemia Virus-Related Virus) from 22Rv1 Prostate Carcinoma Cells’
    http://jvi.asm.org/cgi/content/full/83/14/7353

  51. #51 Charl
    April 2, 2011

    John: viral expression in patients’ blood cells could be due to contamination of those samples with virus (although if it’s flow cytometry, that’s antibodies again – could be non-specific). That would account for the infection of cultured sounds as well – LNCaP is nice ad permissive, and it’s really, really, REALLY easy to contaminate your cell lines (with mycoplasma, E Coli, streptococcus, micrococcus, bacillus… and with viruses). They took EM pictures of a retroviral-like particle budding from some of the cell lines, which suggests they had *a* virus in them (or vesicles that look like C-type retroviruses. At that scale it’s kinda hard to tell…)

  52. #52 t gardener
    April 3, 2011

    I notice from reading the top of your blog that you are still calming that malcovits is up to no good which I find a little unbalanced when there is a prominent psychiatrist in the UK who is directly involved with XMRV research who said about XMRV We’re not going to go doing more and more tests to find out, well what was the virus, because frankly, even if we found it there is nothing we are going to do about it. We’re goin…in the business of rehabilitation
    This man has an almost psychopathic disregard for people’s feelings .I would almost believe he was a psychopath if he had treated cancer victims or those with multiple sclerosis in the same manner. Even if I had the money there is nothing we are going to do about it .Oh well we might as well not look for the virus which causes HIV because we’re going to rehabilitate those people to believe they are not ill. Does ME CFS belong to this man anyway?
    What makes a psychiatrist an expert in viruses or have the right to decide were funding for research into biological causes is concerned. He also states that CFS is real but also mainly psychological.
    As a statement that could be used by a psychopath .I would rate this as a ten out of ten for throwing the illness into a no man’s land between science and hogwash. .It’s a bit like saying HIV is real but also mainly psychological. Its real but ignore the real bit because it is all in the head!
    Another piece of bananas lituture which came from this expert is entitled ME microbe’s mental illness the media and construction of a disease. This sounds a little like Casper .G.Schmidt a psychiatrist IN 1984 publishing HIS AIDS RESERCGH IN .The Group-Fantasy Origins of AIDS, which was published by the Journal of PSYCHOHISTORY
    As an another example
    Referring to a study that stated XMRV virus was found in two thirds of CFS patients, our mad psychiatrist said this research fails to model the role childhood abuse, psychological factors, and other infections may play in the illness. What has this got to do with anything about XMRV?
    For his work on CFS, he has been awarded a medal by the Royal College of Physicians.[25
    If you want to attack rubbish science and people exploiting the media and public then I suggest you look into the psychiatrist involvement in damaging research into ME CFS and undermining patient’s human rights with ME CFS

  53. #53 herr doktor bimler
    April 3, 2011

    If you want to attack rubbish science and people exploiting the media and public then I suggest you look into the psychiatrist involvement in damaging research into ME CFS and undermining patient’s human rights with ME CFS

    Sounds like an excellent topic. For your own blog.

  54. #54 ERV
    April 6, 2011

    John–

    XMRV is contamination, as far as prostate cancer goes, and almost certainly contamination as far as CFS goes. Even if you take WPIs data in a vacuum, their PCR had a high false-positive rate (the only place they could ‘detect’ XMRV in their healthy controls, thus they are false positives, even in the absence of all of the negative studies), which they have yet to address (especially when they want to say it is the ‘least sensitive assay’).

    Also looking at the data in a vacuum, the ‘animal model’ established that XMRV does jack shit as a pathogen. That study was obscene. They administered 10^fucking6 infectious viruses IV, and absolutely nothing happened. The monkeys didnt get the sniffles. They didnt get mild fevers. Nothing happened, at what should have been a lethal dose with a real pathogenic virus. Instead of just letting things be, they sliced up the monkeys and found… jack shit. While I tried to be ‘nice’ in my coverage of that paper, it was obscene.

    If you go to hunting villages in Africa, you could slice open the brains of any hunter and find all kinds of viruses, including retroviruses. While HIV-1 screwed us over, the vast majority of these viruses end up doing jack shit. They get in, but they dont replicate well enough to really do anything, and they cant be transmitted human-human. Establishing infection isnt that special, especially when you are using 10^6 viruses, its connecting that infection to a disease that is relevant information, and the ‘animal model’ did the opposite of that.

    It said you can pump an absurd, not even remotely relevant in the real world dose of ‘XMRV’ into a monkey, and nothing happens. Which means in the real world where no one would ever be exposed to that quantity of virus, it almost certainly lacks the ability to cause any disease.

  55. #55 RRM
    April 7, 2011

    ERV: I guess the belief of the WPI is that every positive results is a *true* positive and that a failure to confirm a result with another testing method is a false negative by that latter method…

    Of course, when they retest these ‘false negatives’ time and time again they will eventually ‘confirm’ their positive findings. I believe this is also how they reported their 99% percent positive rate upon retesting of their Science cohort, by repeated testing of samples that ‘should’ be positive…

  56. #56 Andrew
    April 9, 2011

    The reason why you see these kooky views associated with CFS is because the extremely poor level of scientific funding over the past 20 years.
    If CFS had been funded on equitable levels to other diseases, the scientific picture would be much better and most patients would have more reasonable views.

    The two most recent studies on economic costs estimates were $18, $24 billion (two different samples) to $51 billion dollars (CDC estimate, with relatively high incidence level). Recovery rate is low according to meta-reviews (mean rates of 5-10%, and decreasing the longer one is ill). Quality of life is poor, meaning that when you combine it with estimated incidence, it becomes one of the highest causes of DALYs in the USA. Unfortunately, there are no demonstrated treatments in the literature that show significant objective improvements in the long term allowing patients to get back into the workforce and raise children.
    (By objective, I mean more than just short term ‘moderate’ changes on questionnaires, which most people will agree are subject to multiple biases. Hence the importance of double blinding in pharmaceutical studies.)

    Yet other non lethal diseases (including those non longer lethal due to successful treatment) have NIH funding ratios 20-50 times higher. Do the comparisons yourself if you don’t believe me.

    A minority of patients (the kooky ones) cling to XMRV findings simply as it is the most interesting finding in years. The fact that it is unproven doesn’t seem to bother them.

  57. #57 Mike the Martian
    April 17, 2011

    Doesn’t strike you as odd that most ME/CFS patients have kids with autism?

    – let me infect you

    I am a late-comer to this discussion(?). It certainly is an interesting study in psychology if nothing else.

    let me infect you, where do you get your information/data for your statement above? I would be genuinely eager to know. Is it the result of personal observation or of published studies? I am a reluctant member of the autistic spectrum, as is one of our sons. Such information would be of potentially great importance to me.

  58. #58 Mike the Martian
    April 17, 2011

    Doesn’t strike you as odd that most ME/CFS patients have kids with autism?

    – let me infect you

    I am a late-comer to this discussion(?). It certainly is an interesting study in psychology if nothing else.

    let me infect you, where do you get your information/data for your statement above? I would be genuinely eager to know. Is it the result of personal observation or of published studies? I am a reluctant member of the autistic spectrum, as is one of our sons. Such information would be of potentially great importance to me.

  59. #59 Mike the Martian
    April 17, 2011

    Doesn’t strike you as odd that most ME/CFS patients have kids with autism?

    – let me infect you

    I am a late-comer to this discussion(?). It certainly is an interesting study in psychology if nothing else.

    let me infect you, where do you get your information/data for your statement above? I would be genuinely eager to know. Is it the result of personal observation or of published studies? I am a reluctant member of the autistic spectrum, as is one of our sons. Such information would be of potentially great importance to me.

  60. #60 Mike the Martian
    April 17, 2011

    I apologize for the repetitive entries. As far as I could tell, I was only hitting the review button not the submit one.

  61. #61 daedalus2u
    April 17, 2011

    Mike, that is because both are caused by low NO.

  62. #62 W. Kevin Vicklund
    April 17, 2011

    [citation needed]

  63. #63 Mike the Martian
    April 17, 2011

    Okay, daedalus2u, i give up. Just to further demonstrate my cluelessness and lack of dapth, what is NO?
    Nitric oxide?
    No Offit?
    Neurologic obfuscation?

    And if I am low in NO, should I pick up some at Wallgreen’s, or is it too late?

    I am way out of my league here, so I am mostly here to listen and hopefully learn.
    I just hope that “low NO” won’t be something I have to take exception to. As noted above: citation needed.

  64. #64 Kiwi
    April 18, 2011

    I think the idea that most CFS patients’ kids have autism is just a pretty widespread anecdote now, you’d find plenty of people on forums saying it’s true and the WPI have decided to run with it but as far as I know there’s never been any studies into it.

    And there have been studies showing that CFS patients don’t have low NO (nitric oxide) levels, but the resident crank here won’t let minor details like that get in the way of a good hypothesis

  65. #65 daedalus2u
    April 18, 2011

    I know of only two ways to raise your NO level, meditation which generates neurogenic NO, and applying topical ammonia oxidizing bacteria to the skin where they oxidize the ammonia in sweat into NO and nitrite and set the basal NO/NOx level.

    CFS patients do have low NO levels. They also have high nitrate plus nitrite levels and high levels of nitrated proteins. High levels of nitrated proteins are a sign of low NO, but a sophisticated understanding of NO physiology is needed to appreciate that.

  66. #66 Mike the Martian
    April 18, 2011

    I knew this would happen. Yes, I will have to post some comments concerning CFS and ASD’s. But, it will have to wait until tomorrow since I’ve caught a martian flu bug. Sadly, there are no vaccines for it. I did get all of my human flu shots, tho’.

    Perhaps just a hint: I was born sometime in the first half of the last century. During childhood, I had both measles and mumps. Never got the shots. My particular ASD is Asperger’s Syndrome.

    As I said above, more to come tomorrow.

  67. #67 [citation needed]
    April 18, 2011

    CFS patients do have low NO levels.

  68. #68 daedalus2u
    April 18, 2011

    Mike, I have a lot of stuff on my blog, not so much about CFS, but a lot on ASDs.

  69. #69 Mike the Martian
    April 22, 2011

    Hi, I meant to respond sooner than this, but my “martian flu” was worse than usual. Perhaps it would be interesting to you to know what my flu really is. After that, I’ll tell you some more bits of info which may or may not be helpful in this discussion.

    Besides my Asperger’s, I also have narcolepsy. I also have mixed sleep apnea, ADD, and — recently — essential tremor — for which right now I am having a glass of wine to steady my fingers. Yes, I am a neurologist’s wet dream.

    To my credit (and frustration), I was the one who — a year and a half ago — diagnosed the narcolepsy (with cataplexy), even though I am not a doctor nor have any kind of medical training. I do, however, have an Asperger’s need to know things and intense desire to be exhausted every day of my life. Later testing proved my diagnosis, and I am now on Xyrem, which usually but not always gives me good days. This week for some reason has not been so good.

    (And I also made my own diagnosis of Asperger’s — eight months before we finally found a neuropsychologist who could make it official.)

    Narcolepsy is a curious disorder. It is thought that an autoimmune disorder specifically targets the hypothalamus and kills the cells whiich produce hypocretins. My brain literally does not know whether it is night or day. One theory for the autoimmune dysfunction centers around the narcoleptic having a certain set of genes and the actiive disorder being triggered at a particular time in life by a strep infection.

    Here is the meat of what I was originally going to say. Although I have my own opinions on what it all suggests, I will try to leave the conclusions to you.

    As I said before, I am old enough to have had the measles and the mumps when growing up. I’m not so sure about the chicken pox, but I think so. My parents aren’t around anymore, and they were not good at keeping records.

    Although ASD’s are very genetic and generally run through the male line, I strongly suspect that my ASD came from my mother’s side of the family. With almost perfect hindsight, I can look back and clearly see the symptoms of Asperger’s in my mother. She was extremely averse to human contact and affection, only had two or three friends at a time, had bursts of inexplicable “meltdowns”, and had long-lasting obsessions. I spent a lot of time with my maternal grandparents, and my grandfather had the same kind of problems in his life that I have had, along with similar personalities. I hope, though, that I have much less anger probllems than he did. His A.S. is painfully obvious now. I feel so very sorry that my mother and her father never understood why they were the way they were.

    The point is obvious: Neither I nor my mother or her father ever received the vaccinations which are so terribly feared by some these days. What does that say about the plausibility of vaccines being the cause of ASD’s? I will leave that question to you.

    By-the-way, I did not have the time to look into the NO-autism connection except for a quicky Google search. It does seem interesting that NO is connected with so many neurologic disorders, but I am not nearly knowledgable enough to judge or see how it fits into everything. Again, I leave that to you.

    One final thought: I hate ad hominem attacks. To me they are just a sign of weakness. When someone resorts to ad hominem attacks, that means they’ve got nothing left. (– although there are certain people involved in this debate who are just begging for certain unkind adjectives and nouns, but I am trying to be empathetic and not use them.)

  70. #70 Mike the Martian
    April 22, 2011

    Correction to the 3rd paragraph above:

    … intense desire NOT to be exhausted every day of my life.

    That’s what I get for not having my wife read it first.

  71. #71 daedalus2u
    April 22, 2011

    Mike, I am pretty sure my mother had Asperger’s too, not my father. She was born before thimerosal was even invented.

    So many neurological disorders are related to NO because NO is used for a lot of things in physiology. That is the nature of evolution, existing pathways get elaborated on. If the archetypal pathways involve NO signaling, then organisms descendant from those ancestors will have those archetypal NO pathways multiplied, elaborated and complexified to do what ever the organism(s) evolve for them to do. It is the same reason that ATP is involved in so many different things. When the primordial organisms evolved the first “ATP hammer”, they built themselves and their descendants using “ATP hammers and ATP nails”.

    I would also like to point out to everyone that I have made no comments on the hepatitis C treatment thread, or on the HIV treatment thread. I don’t know if more NO would help them or not, so I say nothing about them. ;)

  72. #72 Mike the Martian
    April 23, 2011

    Thanks, Daedalus2u,

    Thanks for pointing out NO to me. I have this terrible feeling that it will become one of my little obsessive study subjects. Also, thanks for reminding me about ATP. I’d had a cursory knowledge of its importance and its constancy throughout the history of life on earth, but — again — I’d never gotten around to thoroughly understanding how it works. Another project for me.

    I am sorry to hear that your mother had A.S. I hope she knew about it before she died so she could have had the peace of knowing why her life was often such a turmoil. (I assume it was.) And I hope you haven’t been “blessed” with that little pothole in the road of life. (I just used a metaphor!)

    And evolution… Yes, another of my long-term studies. I believe I have read all of Richard Dawkins’ books except — oddly enough — The Selfish Gene. It is now on my iPad to be read in the near future. I and my wife have driven down to Millard County in Utah to dig — actually, split rocks — for trilobites. I’m still happily cleaning some of them.

    For anyone who has studied the human brain, it is obvious that it is built on previously existing parts that have been resized and repurposed as needed. The result has been a marvelous organic computer which never-the-less can do some very odd and sometimes very terrible things when parts get damaged or otherwise altered. Happily, though, evolution has given it a great deal of resilency, too.

  73. #73 Mike the Martian
    April 23, 2011

    Thanks, Daedalus2u,

    Thanks for pointing out NO to me. I have this terrible feeling that it will become one of my little obsessive study subjects. Also, thanks for reminding me about ATP. I’d had a cursory knowledge of its importance and its constancy throughout the history of life on earth, but — again — I’d never gotten around to thoroughly understanding how it works. Another project for me.

    I am sorry to hear that your mother had A.S. I hope she knew about it before she died so she could have had the peace of knowing why her life was often such a turmoil. (I assume it was.) And I hope you haven’t been “blessed” with that little pothole in the road of life. (I just used a metaphor!)

    And evolution… Yes, another of my long-term studies. I believe I have read all of Richard Dawkins’ books except — oddly enough — The Selfish Gene. It is now on my iPad to be read in the near future. I and my wife have driven down to Millard County in Utah to dig — actually, split rocks — for trilobites. I’m still happily cleaning some of them.

    For anyone who has studied the human brain, it is obvious that it is built on previously existing parts that have been resized and repurposed as needed. The result has been a marvelous organic computer which never-the-less can do some very odd and sometimes very terrible things when parts get damaged or otherwise altered. Happily, though, evolution has given it a great deal of resilency, too.

  74. #74 Tony Mach
    January 23, 2012

    Goodness me. Whatever did Munchausens people do before the Internet?
    Posted by: herr doktor bimler | March 29, 2011 5:10 AM

    Oh, Munchhausen’s! Is this where you blame the parents instead of the patient?

    Now, there might be actual cases of Munchhausen’s, but you “Der feine Herr Doktor Bimmler” (Python fan? Or are you just British?) couldn’t tell one from a normal family (and you didn’t understand the mangled point the person making the remark you mocked about was trying to make).

    I have a question: when the medical and social services try to forcefully misdiagnose a child as a victim of Munchhausen’s, does that count as a case of Munchhausen’s by proxy – not by the parents mind you, but by the authorities?

    Dr. David Bell (who is way too kind with people who do this) has two interesting cases to present for people who throw around Munchhausen’s as if it was the answer to everything:
    http://videocast.nih.gov/summary.asp?live=7908
    (From minute 315 to minute 356 with Q&A, with a interesting comment by Dr. Nancy Klimas at the end that disbelieve by medical authorities can cause trauma, and Dr. Bell quoting Dr. Holmes from the CDC saying back then it was “Hysteria” in Lyndonville, something Dr. Bimmler would probably concur with)

    PowerPoint slides are available here:
    http://www.hhs.gov/advcomcfs/meetings/agendas/bell_factitious_102909.ppt
    http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html

The site is currently under maintenance and will be back shortly. New comments have been disabled during this time, please check back soon.