Q & A With Mikovits

Discussion in 'Fibromyalgia Main Forum' started by jasminetee, Oct 20, 2009.

  1. jasminetee

    jasminetee Member

    Some quotes and then the link:

    "There is no symptom of CFS that cannot be explained by understanding the biology of this retrovirus. We will very soon have enough data to say X satisfies the same correlates of disease association as HIV and AIDS."

    "The p value for association of CFS with X is 10 -35; Virtually impossible to have CFS without XMRV."

    "We still cannot say cause…in fact one cannot say cause for HIV AIDS but everyone knows what that means."

    "Science is conservative so we cannot say cause but have accumulated significant data that will within the year allow us to satisfy Hill’s criteria of causality the main point of which is every case of the disease contains the pathogen." ----- See the second link for Hill's Criteria.

    "Since the submission of the manuscript on May 6th, we have developed a sensitive and specific seroconversion assay. We can detect antibodies to the XMRV envelope in>95% of the>250 patients we have tested from around the world. We have failed to call a case wrong either way."

    "We see great promise of combination therapeutic strategies very quickly If an individual gets the immune system modulated to control and silence the virus then one can be well."

    "John coffin is a member of the US National Academy of Sciences. No greater authority on these viruses exists. 3 members of the US NAS reviewed this work and all are convinced of the science but need to be conservative so as not to scare the general public."

    "They are convinced of the infection and the public health risk as our data suggest. 10 million Americans are infected with XMRV and at a risk for CFS and cancer. For me it is crystal clear and all of the scientists who have seen these data have the same response: Absolute amazement. The best in the world are all over it. They may not understand CFS but they understand an entirely new human disease entity ten fold the incidence of HIV!"

    Thank you rebecca 1995 at Phoenix Rising for supplying these links for us:



    [This Message was Edited on 10/21/2009]
  2. TeaBisqit

    TeaBisqit Member

    I can't even imagine a world where I'm not sick like this. To get my life back or even half a life back, that would be amazing beyond words. And just to get that validation. I've prayed so hard for the validation. To be able to hold my head up and not be afraid to tell people what I have anymore.
  3. spacee

    spacee Member

    You have been so great at giving us the info that is out there. And I greatly appreciate giving us some quotes for those of us who are more brain fogged than others.

    Thank you so very much too!

  4. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I am torn. I understand Mikovitz seeing it very clearly. And I understand her excitement, I share it.

    But I do think some of her statements may be premature. Don't get me wrong. I think this is THE announcement we have been waiting for. I just would hate for the public, particularly other doctors and the government, to hear such bold statements only to have them discredited, even in the least, later.

    Given her statements, if I knew they were solid, it would make me start calling every news outlet I could find telling them, NBC, ABC, etc. (by the way, I noticed that the evening and cable news has not caught this story yet, now that I think of it.) Our metro newspaper has not carried it. But I understand because they have no local experts to interview.

    So I think maybe I will wait until the next study, from another lab, confirms it. And if it does, then I will be making an all out media campaign.

    And by the way, we can't say HIV causes AIDS?


    [This Message was Edited on 10/20/2009]
  5. TigerLilea

    TigerLilea Active Member

    I think this is what WPI should have done also. It was too soon to go to the media. People are getting too excited at this point in time.
  6. zeowa

    zeowa New Member

    I'm not sure if this level of research has taken place in the past with other suspected culprits...? Has it?

    Part of what's difficult is to know, as a person with CFS, does the involvement with the NIH, NCI and Cleveland Clinic make this research superior to anything else done for CFS (my guess is yes)?

    Even still, the public really only knows of just over 100 people involved in the study, which is too small a group for conclusive results, period. I just don't think we know how much has gone on since these initial results were found (probably that happened at the beginning of 2009 or before), so what they "know" could be far beyond what has been released at this stage.

    As far as HIV causing AIDS--I don't think there is a direct causation that's been proved, but you can't find AIDS without HIV present. (Better explained in that link upthread about Hill's definitions).
  7. TigerLilea

    TigerLilea Active Member

    What if this turns out to be another false hope? I would rather that WPI had waited until they had more conclusive proof that they were on the right track.
  8. TeaBisqit

    TeaBisqit Member

    TigerLilea isn't trying to rain on everyone's parade. This is about facts. And right now, we don't have the full facts yet. We need to know by at least a 98 percent chance that this really is it.

    The WPI has been making huge claims all year. They claim they can reverse the disease using immune modulators and cancer drugs. However, we have yet to see any of these miracle patients in action. And I haven't heard of the Whittmore's daughter getting out of her wheelchair yet.

    So far, WPI has delivered us a virus. But we don't know for sure yet if this is THE virus or just another thing like EBV or HHV6.

    We need to see more research, more tests. We need to know for sure before we can all go running to the media and every jerk that ever doubted us.

    Look at it this way, if you were a lawyer, would you be able to take this one small study from WPI and go before a judge with it? No, you couldn't. You need more evidence. WPI and alot of other places are working on that evidence right now. And we all need to wait for it.

    I'm hopeful, but I'm near tears every single day over it because I feel like I'm going to get my hopes crushed. I feel like I'm being tortured. I want this to be the one so badly. But if it isn't, I don't think I can handle that level of devastation. I can't take a huge disappointment like that. So all I can do is pray it's the one.
  9. zeowa

    zeowa New Member

    about cautious optimism!

    I really don't know: were the suspected findings of EBV and HHV6 similar to this in terms of the level of research? Who studied EBV and HHV6?

    One difference I am excited about (though, like just about everyone, not assuming the facts are in at all yet!) is that, while EBV, HHV6 and so many others are found in healthy controls the world over, the positive control numbers for XMRV are very low. I think this distinguishes XMRV from other suspects, though we don't what role XMRV plays in CFS yet.

    I continue to feel confident, at least, that the lead researcher is Mikovits and has been working in the field of cancer research. The types of research going on with many kinds of cancer are quite impressive in terms of their application of specific medications for those with or without certain genetic markers/predispositions. The combination of genetic material with research I would guess was not present during other viral studies/possible CFS "bugs." Regardless of the specifics of XMRV/CFS, if we can remain under the umbrella of the NCI, we can hope to be a part of such intense and specific studies which attract the best funding and researchers!
  10. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I hope I was misunderstood in my post.

    I agree with Mikovitz and her group doing what they did. They kept it quite until it was published in a respected journal. The news media that has covered it picked it up from there.

    The concern I have is the comments of the link being so strong as to be compared to HIV to AIDS, which all know is cause leading to illness. I think that comment is premature.

    And that there is as much a public safety issue as HIV is. That is premature, since we don't conclusively know virus causes illness.

    I am very excited about this announcement. I think we may just have it here. It fits better than EB, HHV6 and all the other discoveries in the past. This one seems to explain everything.

    I am a news reporter. I know that credibility is fostered when you stick to what the facts are and not draw conclusions on what those facts mean.

    In my view, it would be better if the researchers stuck to what has been proven in their study (67% of CFS patients have the virus, 4% of healthy do, 98% of patients have antibodies, what lab shows as to how it is transmitted and how virus acts when inserted in healthy cells, and how this virus attacks the immune system and what stimulates the virus growth, percentage seen in FM and autism patients.)

    Let the others not involved in the study draw the conclusions and hypothesize as to what this means for patients and the public at large. One example is the guy who studied the virus in mice. He would be a good one to quote as to what this all means. Other doctors that specialize in CFS treatment but are not the researchers might be good to quote for what this might mean. But the researchers need to show they are being objective, which means they need to keep their assumptions to themselves until a study proves it. JMO

    As a reporter, we are taught to put the dots in the stories and let the reader connect them to draw the conclusions.

  11. jasminetee

    jasminetee Member

    Lum and spacee, you're welcome. :)

    Tina-- I hear what you're saying and I understand. It does seem that Mikovits addresses this though as she states: “3 members of the US National Academy of Sciences reviewed this work and all are convinced of the science but need to be conservative so as not to scare the general public."

    As to HIV causing AIDS there are still many people out there who don't believe that HIV is the cause of AIDS or even in people with AIDS. I believe there will probably always be naysayers about HIV causing AIDS and that if XMRV is “proven” to cause CFS the same thing will happen. That's human nature.

    Zeowa – the fact that the NIH, NCI and Cleveland Clinic are involved in this research does make it seem more legit.

    Tea-- I understand how you feel too. I am also eagerly awaiting more testing and more information.

    Tiger and everyone I'm just searching for the truth. I'm not saying I know for a fact this is it. I am excited though. That's how I feel, but I don't expect everyone else to react the same way. However, I feel like those of us who are excited are continually getting slammed here for it.
  12. TigerLilea

    TigerLilea Active Member

    Why are you getting so bent outta shape because I personally happen to feel that people are getting too excited? I am not criticizing anyone's emotions; it is just an observation. Read TeaBisqit's message and you will understand why I am concerned. A quote from her reads:

    "I'm hopeful, but I'm near tears every single day over it because I feel like I'm going to get my hopes crushed. I feel like I'm being tortured. I want this to be the one so badly. But if it isn't, I don't think I can handle that level of devastation. I can't take a huge disappointment like that. So all I can do is pray it's the one."

    From what I have read here the past few days, I doubt very much that TeaBisqit is the only person feeling this way. This is why I say that people are getting "too excited".

    Leave if you want - it's your choice!
  13. jasminetee

    jasminetee Member

    I hope you don't leave. I enjoy reading your posts and I value your input.

    What I don't get about this, "People are too excited!" statement that keeps showing up in most threads is that I don't see any of us proclaiming that this is THE ANSWER or jumping up and down yelling Hooray! or anything like that.

    You'd think from this continual criticism of us that that is what we are doing. But you know what? If people start doing that then I say good for them and if I feel like joining in I will and if you don't then don't.

    I just ask Tiger, that you quit trying to make us feel bad for feeling good. It's not constructive and I hate to see you bringing other people down.
  14. sascha

    sascha Member

    best thing i've read- i was feeling so discouraged today- this really helped me - THANKS

    WHERE CAN ONE FIND THE LATEST AND GREATEST INF ON XMRV ?? i have been wondering this-

    i'll definitely be watching for Teejkay's posts-
    thanks for giving us this latest- best to all, Sascha
  15. jasminetee

    jasminetee Member

    No Fool --- I don't see why it would matter how old patients are, how many years they've been ill or what their gender is. That all seems irrelevant.

    Here's what Cort Johnson wrote (link at bottom). Cort has a different take on the WPI's chosen cohort than I do. I think they've started with the right kind of CFS patients and I'm pleased with their criteria for who they put in the first studies.

    I am very interested in finding out what happens to the rest of us when we are tested.

    "The WPI did not choose your garden-variety chronic fatigue syndrome patients for their first study. They chose the kind of patients that they had the most confidence in with regards to this virus. There’s nothing wrong with this; its standard procedure in the research world. In their first study researchers usually include patients they think will best make their case. Those patients still fit the definition of the disease but they’ll often have less than subtle differences."

    "When scientists want to find a virus, we look for it in the sickest individuals because often this is where there is likely to be the highest levels of a virus, if present. Dr. Suzanne Vernon"

    "A Special Group of Patients - In this case Whittemore Peterson Institute was refreshingly direct in how they ’stacked their deck’. They stated the study participants had ’severe disability’, low natural killer cell functioning, increased pro-inflammatory cytokine levels (primarily IL-6, IL-8), ‘extremely low’ VO2 max during exercise testing and RNase L dysfunction. During a radio interview we learned that 20% of the patients had lymphoma."

    "**Addendum - some good news has cropped up regarding the possible spread of XMRV in chronic fatigue syndrome patients. It turns out that one of the criteria the WPI used to select their patients in this study - RNase L dysfunction - is not a factor in who carries the infection. People with or without RNase L dysfunction can test positive for XMRN."

    [This Message was Edited on 10/21/2009]
  16. jasminetee

    jasminetee Member

    I've been finding info on XMRV over at the Phoenix Rising forum as well as just doing Google and YouTube searches.

  17. TigerLilea

    TigerLilea Active Member

    I AM NOT TRYING TO MAKE ANYONE FEEL BAD, Teejkay! The only person who can make you feel bad is you, yourself. I am not criticizing anyone. Just saying to be cautious until we know more. That, my dear, is called common sense.

    I'm sorry if you don't give a d*mn about other people possibly getting very depressed if this doesn't pan out as we hope it will, but I do care and I won't apologize for that.
  18. chrissy12

    chrissy12 New Member

    I think we all have a little "I hope this is the real deal." There have been so many ups and downs in this disease, you are afraid to jump on and have our hopes dashed.

    I was really, really happy after talking with Dr. Lerner on Monday. I was almost afraid to ask the question for fear he would deny the research. He didn't. He believes it is a real possibility. He actually called Dr. Mikovits and congratulated her and asked if she needed any assistance, he was willing. However, he too said, he would like to see the test replicated for science sake. He has very positive attitude toward Dr. Mikovits and says he knows her.

    I value his opinion very much because I have seen first hand how much he knows about this disease. He gets it. He made a comment like "they won't be able to say people have a mental problem anymore." and then smiled with glee..... He really does not like it when people do not honor this disease for what it is. He has seen first hand the devastation it has on lives. He is so happy to see the research moving.

    I thanked him for his tireless work and he nodded and said he is glad to see that it is going big. He made a comment that the Cancer Institute and Cleveland Cllinic will help it to move forward, too.

    It's a good time for this CFS. I don't think they can stop the movement forward now.
  19. TigerLilea

    TigerLilea Active Member

    You are very lucky that you have a knowledgeable CFS doctor that you can see. In my area there is absolutely no one. I know I am certainly keeping my fingers crossed that the XRMV virus finding pans out. Hopefully this news will get other researchers to start taking a serious look at CFS, also.

    I can't wait for the day we can wipe the smile from Dr. Simon Wessley's face!
  20. jasminetee

    jasminetee Member

    You seem really angry. You're yelling at me and stuff. What's going on?

    Of course tea knows I feel bad for her situation and depression and for you to decide that I don't care is stupid.

    What does my enthusiasm for learning more about XMRV have to do with it?

    You've got other issues, that much is clear. Quit baiting me and leave me alone.

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