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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. jackson

    jackson

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    pictureofhealth - Very well stated, great questions and valid hypotheses...that might be proven correct. Mikovits is brilliant!! She is asking the right questions and I think M.E. research has gain momentum because of her research. If only she was given the funds required to really test her hypotesis in a resonable time frame. I do think the term neuro-toxic is a little misleading leading in this context as its a given for a great deal of neurotropic viruses. Yes, it does apply as a generalization here in M.E. with these retroviruses... and yes its fits nicely for a hypothesis in M.E... but having the theory fit nicely with available data just means its a very good hypothesis to investigate.

    George - Your right! my statement about it looking like a secondary issue is very much so my oppinion based on my years of study in this field. How could it be anything but? Thats not to say that treating a secondary infection wouldnt result in significant improvement in patient symptoms...

    will continue...
  2. jackson

    jackson

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    "Just to say 'well look that person has XMRV but they are healthy', is in fact possibly not accurate"

    I was actually referring to that fact that it makes it harder to prove causality because you will have to observe these people to see why they are not sick and watch them over time .. possibly many many years to see what happens to them. THey might become sick with an XMRV related illness or not? who knows? but its a fair question for them to be asking.
  3. eric_s

    eric_s Senior Member

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    But those are not clinical trials. What would be needed are real trials, which probably means carefully selected patients, placebos, etc. Only this could produce evidence, as far as i know.
    And in order to do such a trial, you need to go through some buraucratic procedures first (for a good reason).
  4. jackson

    jackson

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    Exactly, that's why we really cant have the answers we really need for a rather long time.. we are still in "does it really exist in patients or not" exercises. Maybe a maverick will come in and set one up but I wouldnt hold my breath. I just wish science was more flexible and allow duel tracks..as it would in cancer or other illness seen as more pressing.
  5. Cloud

    Cloud Guest

    Not sure yet, but I'm going to try and make it since this is the closest Dr Judy will ever get to me in her circuit. GMA is very expensive and don't take my insurance, so that's out....but I do appreciate them sponsoring this talk. I'm also distributing the flier to some local docs....I figure a few of them may be interested in learning more after the blood ban news.
  6. lancelot

    lancelot Senior Member

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    If mikovitz is finding XMRV/MLV in CFS, fibromyalgia, MS, autism, Lyme disease, Hashimoto's Thyroiditis, depression, reactivity to mold, and cancer, then doesn't this point to XMRV/MLV as being *just* an opportunistic pathogen and not the cause of any of these diseases?

    In another example, you will see reactivation of many human herpes viruses 1-6 involved in many different unrelated diseases(ie: HIV/AIDS, RA, CFS, etc) while not the cause of any of them. HHV's are endogenous opportunistic viruses while XMRV/MLV could very well be an exogenous opportunistic virus much like mycoplasma is an exogenous opportunistic pathogen linked to CFS.

    When we look at the other 2 known human exogenous retroviruses, we see HTLV causes adult leukemia and HIV causes AIDS. So, i am very confused about what Mikovitz is trying to say about XMRV/MLV as being the cause of what exactly?
  7. urbantravels

    urbantravels disjecta membra

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    I mostly agree with this - since we have such limited energy, using it up on hurling ourselves at a battery of unproven therapies can really be detrimental to our overall well-being.

    With that said, I just hope I don't have to preserve my body for so long that eventually I'll need to be submerged in a jar of formaldehyde. :eek:
  8. urbantravels

    urbantravels disjecta membra

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    the preservation of little dummy

    IMG_20101216_162002.jpg

    don't worry! I think he can escape!...
  9. urbantravels

    urbantravels disjecta membra

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    IMG_20101216_162029.jpg

    whew! he got out before the lid was closed! he may be a dummy, but he's pretty tough.
  10. Cloud

    Cloud Guest

    I completely understand waiting until we know more before spending tons of money on unproven treatments. But I wouldn't just do nothing either. My suggestion is to get a good ME/CFS doc and at least get the diagnostics done. You never know....you may have something treatable like I did. I'm not well, but I'm back from the bed bound abyss thanks to Dr Peterson. If I had just waited, I may not even be here today. Instead, I have been able to have somewhat of a life that I haven't had for many years.
  11. floydguy

    floydguy Senior Member

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    Completely agree!! There are simple inexpensive things that can make a difference. LDN is one example for me. It only costs $20 a month.
  12. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Could be the formaldehyde etc in our everyday products that's overburdened the immune system already and made us ill!
  13. Lanya

    Lanya

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    anybody else finally get their Gordon Medical results?

    I got mine; negative on both antibodies and direct PCR for XMRV. Apparently, in advance of Judy M's presentation, everyone is being notified if they were in the study.
  14. SOC

    SOC Moderator and Senior Member

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    I second this! Many of us are suffering from what are probably secondary infections -- not surprising with immune dysfunction. Treating those secondary infections can vastly improve quality of life and reduce long-term damage to our bodies. We don't have to wait around doing nothing until the perfect treatment is available.

    Like Cloud, I went from bedbound to working (at home) 12-15hrs a week. I can think clearly again. I can visit with friends without becoming exhausted just keeping up with the conversation. I can go up and down stairs more than once a day. Treating secondary infections, POTS/OI, and other known abnormalities is definitely worth it, IMO, but you may need a good ME/CFS doc to do it.
  15. Forebearance

    Forebearance Senior Member

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    I'm really grateful to GMA for sponsoring this lecture.
    Yeah, I understand that the docs at GMA don't have the answers yet, but I feel like when the answers arrive, Dr. Gordon will be among the first to hear about them and apply them.
  16. RivkaRivka

    RivkaRivka Senior Member

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    if anyone needs a ride FROM THE SAN FRANCISCO AREA to the lecture, please private message me. i know someone who is going and is offering a ride.
  17. August59

    August59 Daughters High School Graduation

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    Any news???
  18. InvertedTree

    InvertedTree Senior Member

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    Lanya-

    I got mine too with a negative result. It seems that everyone who was in this cluster of patient samples that got 'misplaced' are all turning up negative. I think our blood samples got compromised after they finally found them in the refrigerator. By the time they found them they'd been sitting there for 8 months.
  19. RivkaRivka

    RivkaRivka Senior Member

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    i heard that judy mikovits could not show due to plane mishap, and annette whittemore is speaking in her place. that is all i heard to far.

    update: she may have arrived, but late!!

    new update: i just got a 10 min cell phone call with someone in the audience, and i can hear judy talking! barely. it is bad audio. but at least she is there.

    she is talking about the UK study.
  20. jam338

    jam338

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    I am among the GMA study group. No results for one year, then suddenly 1 wk before Mikovits presentation a flurry of us received "negative" results, but we're still testing (??) Confusing. More confusing is that the original Mikovits research showed findings of 67% to 95% positive in WPI cohorts. Yet the majority of GMA cohorts are apparently negative (???) If true, then this clearly suggests XMRV is not a primary factor in this illness. Or, something odd happened with the GMA cohorts (???) re compromised samples misplaced as some have suggested.

    I agree with what other GMA patients have posted. They are trying, but don't have all the answers so please don't assume they do. I have paid over $15,000 there and am still bedridden and very sick. Heartbreaking as I too really thought they were most likely to have answers. They may have more than many, but don't have it all. It is a very complex illness as we all know. That said, they did know to have infected root canals checked out. Unknowing to me I had 2 very severely infected root canals...an additional burden on the immune system. Treatment is very expensive. I hear prices are steadily going up. They do not take any insurance or Medicare. In all fairness, I am sure there must be some success stories among their patients, but in all honesty I personally don't know of any who are well. Have met many patients there through the years. The one thing we all have in common is that we are very sick, and we love the doctors and staff there.....very compassionate care.....IV room nurses are outstanding......but recoveries, not so much.

    Many patients feel a bit guinea-pig with trials of this and that with costly treatments. But, that is the only way with this illness to find what combination of things might give relief. Treatment seems pretty much focused on finding relief and hopes of finding a cause.

    FIrst appts are typically somewhere around $900 now from what I hear. I know mine was over $900. Followups are around $300...frequently as high as $400 - $500 after the trial things are added to bill. They do provide Super Bill Invoice for submission to your insurance if you have out of network coverage. They have an in-office IV room as well lab draw room. Offer many complimentary alternative services along with integrative M.D.s. Lots of staff changes this past year while growing their organization. Resulted in a bit of office functional transitional chaos which will settle over time.

    Oh, they also do phone consults, but rates are the same as office visits. Office visits are categorized as brief, general, extended fee scale. Since the growth expansion everyone I know says all of their appts are pretty much charged at the highest extended visit scale....even phone consults. The last two phone consults felt a bit like "running the clock out" to ensure the higher rate. A bit frustrating. Not complaining. Am grateful for their dedicated services. Just making sure others know the cost factors before you sign up in the blind.

    That said, you will definitely get care where they think outside of the box, care about their patients, try to accommodate special needs, and they have a comprehensive depth of understanding about the limitations and challenges with this illness. Amd, you can email your doctor. For service and compassion they get A+.

    However, they are wired in with CFS and lyme docs across the country...as evidenced by the Mikovits presentation. If a breakthrough happens, GMA will be among (if not THE) leader on the west coast in CA.

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