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Gordon Medical Associates (Collaborator with WPI) - Mikovts lecture and XMRV Findings

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Cort, Dec 15, 2010.

  1. Cort

    Cort Phoenix Rising Founder

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    Gordon's results and Dr. Mikovits lectures.

    Gordon Medical Research
    Is Proud to Host
    Dr. Judy Mikovits, PhD
    Co-author of the seminal 2009 paper "Detection of an Infectious Retrovirus, XMRV, in Blood of Patients with Chronic Fatigue Syndrome"

    Speaking on
    Chronic Fatigue Syndrome,
    the XMRV Retrovirus
    and Human MLV-related Viruses
    How they relate to chronic inflammatory neuroimmune diseases, including CFS, Multiple Sclerosis, Fibromyalgia, chronic Lyme disease, and cancer..

    Free of charge to the public
    Tax deductible contributions to the Whittemore Peterson Institute gratefully accepted.
    This event is fragrance free
    Please do not wear scented products to the event
    Monday January 17, 2011
    2:00-3:30 PM
    The Friedman Event Center
    4676 Mayette Avenue
    Santa Rosa, CA 95405​
  2. floydguy

    floydguy Senior Member

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    If I lived in the Bay Area I would consider going to GMA. There are very few places that seem to know so much about Lyme, Mold, CFS, XMRV, etc. Can't wait to hear more from them!
  3. George

    George waitin' fer rabbits

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    So maybe they are expecting to have the rest of the results by then?? Wow, that will certainly be an interesting talk!
  4. jackson

    jackson

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    Sounding more and more like a secondary issue rather than the primary cause. I think the only way this virus is going to be the cause of M.E. is if a situation arises that lets this virus run wild in the body... at which point we have to ask what happen to allow this? Genetic factor? Enviromental toxin? and why is this virus any more important that any of the other pathogens found/discovered in M.E. patients? Just being a retrovirus really means nothing when comparing to other infections.

    I think the only way to answer this is an a drug trial aimed at XMRV. If the patients get significantly better in 6 months then there is something to it... without a trial it could be 10 years plus to get to the bottom of this.. and if they find after 10 YEARS! XMRV is playing a role..then drug trials? who can wait?
  5. illsince1977

    illsince1977 A shadow of my former self

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    I 'm not trying to bad mouth them, Floydguy, but I've been a patient of theirs since 2001. I am bedridden once again, as I was when I first started seeing them. I've been told I have Lyme and coinfections, mold susceptibility, CFS, detox issues and now, yes, XMRV (I'm probably leaving something out!). I was one of the people in the study. So, just because a practictioner knows about these things and "treats" for them doesn't necessarily translate into improvement in a patient's health. GMA apparently has many "still sick" patients, not only me. They try, but they don't have "the answers". I fear their publicity successes may exceed their treatment successes. I'm sure they will gain many new patients from this lecture. Don't be lulled into thinking that they don't know it, too!
  6. redhummingbird

    redhummingbird

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    Well said. Count me as another very sick patient. They do try but they don't have the answers. I've paid them a lot of money but I haven't improved. I think their strength lies in treating other chronic illnessess rather than me/cfs. They did participate in a study with WPI. I took part in a study well over a year ago but still have not received my xmrv results which I think is just ridiculous.

    I don't see GMA really advocating for patients anymore and I've seen them change from a patient oriented practice to a money oriented practice. Sad but true.
  7. Cort

    Cort Phoenix Rising Founder

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    This is almost like the merry go around is it not? The usual suspects...I wonder how many people actually get better??? All these different diagnoses........again and again........(but then where else do you go ?)
  8. floydguy

    floydguy Senior Member

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    Absolutely no illusions about them being any better than anyone else but at least it's one stop shopping. My Lyme doc is in CT, my mold doc in MD and my CFS doc in Florida. Having all the non-answers under one roof would at least be convenient!
  9. Cort

    Cort Phoenix Rising Founder

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    I think it shows how difficult things are. I know some people do better with Fibro Fatigue Centers but alot of people apparently don't. (It would be great to have a survey....) - and they seem to be covering all the bases, really......so much is missing....
  10. eric_s

    eric_s Senior Member

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    That's why i still think it's better to abstain from such therapies and wait until they have really figured out what ME/CFS is and can do something that targets that mechanism.
    So many people that have tried those therapies but haven't improved. When looking at the success rate (ok, i don't really know the rate but it can't be very high) i prefer avoiding taking a lot of medication for years and possibly doing more damage than it actually helps me. I think i rather try to preserve my body for the time when there is a working therapy.
  11. garcia

    garcia Aristocrat Extraordinaire

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    I'd beg to differ.

    We know this a-priori. ME/CFS is an illness which is triggered by an identifiable preceding event in most people, most often infection (e.g. EBV).

    Actually it does. The 2 other known human exogenous retroviruses (HIV and HTLV) are both causative for serious disease, and certainly not secondary infections. We know in mice that MLVs cause serious degenerative neuroimmune diseases.

    I agree with you 100% on that point. The best way to move forward is a drug trial IMHO. Unfortunately the naysayers are holding this up.
  12. Jemal

    Jemal Senior Member

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    This! This is why I am not bothering with doctors or tests at the moment. I have had my share of them and they couldn't make me better. I am now taking some simple medication and supplements and biding my time. Need a real treatment! As soon as the cat is out of the bag, I am going to storm the doctors office again. Unfortunately it could be a long wait, until we have a decent treatment, that works for most patients...
  13. eric_s

    eric_s Senior Member

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    Yeah, we really have to do whatever we can to shorten that time. Nobody here wants to wait... What makes it hard to know what to do is that it seems to be very difficult to assess how long it will take. There could be some big news out quickly that will change everything or it could go on and on.
  14. lono

    lono

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    We all face this dilemma. There are a million treatments out there that purport to make people better and cost tons of money but don't necessarily lead to any improvements.

    That said there are some things to try that will (unfortunately) not cure you, but can lead to some incremental improvements and won't bankrupt you. I'm by no means cured, but I have had some improvements via several inexpensive treatments. These include:

    - Low Dose Naltrexone - my insurance doesn't cover it, but I can get it for a bit over $30/month
    - Cholestyramine - a number of folks have taken this for shorter periods. I seem to benefit from taking it continually. My insurance covers it.
    - Getting better sleep. Unfortunately I have to take a sleep aid every night, but if I didn't I'd be much worse off.
    - Rich Van Konynenburg's methylation protocol.

    Many of these don't work for other PWCs and I don't know anyone who has tried them and been cured, but for me (and definitely lots of other PWCers) they've helped.

    They're all low(er) cost and there's every reason to believe they are low(er) risk treatments. If the choice some people are facing is to try nothing and wait for the ultimate solution or to try some lower cost, lower risk treatments, please at least try out some of the latter.
  15. floydguy

    floydguy Senior Member

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    I completely agree. I've improved quite a bit by doing various low risk treatments. It could still many years before that magic pill becomes widely available. Furthermore, we know that there is a relatively large percentage of people who don't have CFS to begin with. Are you certain you are not one of them? I am not.

    The only treatments I wish I hadn't taken were Cortef and some of the harsher Lyme treatments like Mepron but aside from that I am happy that I've experimented with various things.
  16. jackson

    jackson

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    "Actually it does. The 2 other known human exogenous retroviruses (HIV and HTLV) are both causative for serious disease, and certainly not secondary infections. We know in mice that MLVs cause serious degenerative neuroimmune diseases."

    Unfortunately, this reasoning has nothing to do with science fact. This presumption has value in theory but at the end of the day means very little and doesn't advance our understanding of anything.. if not promoting unnecessary stagnation. There is nothing special about it being a retrovirus as far as presuming it causes anything or has any special more severe implications. Based on what? the commonality of reverse transcription? same protein expression?

    I am not saying it doesn't cause M.E. but if we are presuming things based on what we know about infection disease in practice and text then the assumption would tilt toward secondary not primary causality.

    They will debate the its existence in patients for years and then its going to be extremely difficult if not impossible to prove without a doubt that it causes M.E. within 10 years.. particularly since its being found in many pretty darn unrelated inflammatory disease processes and even in healthies. The only quick answer is treatment with antiretrovirals that are very specific to this virus while not effecting herpes family viruses or any other found in M.E.
  17. eric_s

    eric_s Senior Member

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    I'm not willing to wait. Seriously, if ARV trials are the way to go (and i don't know if they are), we will have to go and do them somewhere where it's legal, if they don't do them in our countries. I guess it's possible to do that and i'm not willing to wait. I want to see the association question answered for good quickly and an assay that is reliable. Then they have to go about causation. But i want to see some real progress in those things wihtin 1 year.
  18. jackson

    jackson

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    The good news for Americans is they are legal and are available. I know a couple docs that will prescribe them for CFS when indicated by XMRV. The only catch is.. who is willing to risk themselves with so much uncertainty? There is not only the side effects/damage in traditional usage but many patients will undoubted suffer immensely from the effects. There are so many patients who flat out cant tolerate most meds...and would they be willing to put themselves through that trauma and stick to it if they dont even know if its helping or hurting? I could see many patients dropping out of therapy based on extreme intolerance of the meds themselves...then they have a resistance issue when/if they later find that meds are required. Very difficult choice without good clinical trials...which themselves take years.
  19. George

    George waitin' fer rabbits

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    I'm curious at your line of reasoning Jackson. You say that the indications are that XMRV is a secodary infection? Do you have facts or a line of reasoning to back that up and would you mind elaborating on it here? I'm not asking for you to cite articles but I would appriciate a bit more than just tossing out what 'looks like" an opinion. Thanks in advance.
  20. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Jackson - hi. Seem to remember Dr Mikovits indicating at the 1st XMRV Conference that retroviruses are for the most part neuro toxic - though one forum member suggested it didn't apply to all. (Also was there some speculation that XMRV might cause damage to cellular membranes? - can't remember).

    She also hypothesised that their very presence might cause a chronic, low grade immune response over years in an individual, leading to inflammation - whichever way one looks at it. And the fact is that ME/CFS patients suffer from inflammation from some source no question - though as yet to be formally identified.

    Perhaps the accumulated burden of XMRV together with herpes viruses, EBV, CMV and other pathogens found in varying degrees and varieties in ME patients, and accumulated throughout life in general, plus increasingly ingested and absorbed petrochemicals, plus a nice dose of vaccination challenges before a working trip to boot, might tip a person into hyper immune stimulation/reactivity.

    So why can one person get all this and have loads of vaccinations and a heavy work load and etc etc and be fine and not another? Why do some people get severe asthma and not others despite living in the same polluted, allergen loaded environment? WHy do some people get diabetes whereas others can eat sugar to their heart's content? Well life's just unfair.

    Who's to say that those 'healthy' members of the population who test positive for XMRV now, are not silently incubating and in a 'slow burn' (which is how my illness crept up on me gradually) ie they will succumb to ME in a few years down the line, or they won't and are asymptomatic but they are still infectious (like Herpes 2)?

    We don't have the answers because we are at the cutting edge here. Just to say 'well look that person has XMRV but they are healthy', is in fact possibly not accurate.

    These are of course hypotheses right now, but a good starting point.

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