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Klimas XMRV Lecture in Florida

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by _Kim_, Oct 25, 2009.

  1. CBS

    CBS Senior Member

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    Protection from Myself


    Which, sadly, is exactly how it needs to be!
  2. cfs since 1998

    cfs since 1998 *****

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    I'll do section 2.
  3. Cort

    Cort Phoenix Rising Founder

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    Culture test doesn't indicate a latent infection?
  4. blackbird

    blackbird caged.

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    Segment 1
    The disease - what we know
    Overlapping conditions
    Physicians, psychologists

    XMRV, CFS/ME, & You
    Dr. Nanacy Klimas, M.D.
    University of Miami, Miller School of Medicine
    A 97 minute lecture with Q & A recorded Nov 2009
    www.ME-CFSCommunity.com
    www.CFSClinic.com



    Segments:
    1 Intro. Overlapping Conditions. Viruses
    2 Viruses &CFS/ME. WPI & XMRV
    3 XMRV. NK Cells. Latent & Retro Viruses
    4 Retro Viruses. Biomarker
    5 Antibodies. What We Don't Know. Cancer
    6 Virus Life Cycle. Immune Modulation Drugs
    7 What's Next In Research
    8 Research Funding And Advocacy
    9 Testing For XMRV. Q&A: Antibodies
    10 Q&A: Drug Timeline. U of M Clinic & Studies
    11 Q&A: Morton Fund. Taking Care Of Yourself
    12 Q&A: Miami CFS Clinic



    Marly C Silverman

    Event Sponsor: P.A.N.D.O.R.A.
    (www.PandoraNet.info)

    So, thank you so much for being here, and without any delay at all, I'd like to introduce Dr. Nancy Klimas.


    Dr. Nancy Klimas

    Thank You.
    So what brings us here today is this new discovery that you all might have seen in the paper.
    (skips)
    Erm, let's. Can you just dim the lights down so that people can see that slide OK. That's great, super.

    So let's just go ahead and get stared.
    I'm starting with a little background stuff.
    There's three parts to my talk, OK.

    Part 1, a little background for those of you who that are sort of new to the world and don't realise all the work that's been going on.
    Part 2, all about this virus and it's implications. Most of my talk's about that.
    Part 3, is plenty of time for questions and answers, so there's going to be a lot of informal time. That's usually the best anyway, so if I get too long winded, you all can just tell me to stop.

    (laughs)
    I do get excited.

    (Image of four faces shown, with text above:
    CFS/ME and Viruses
    Chronic Fatigue Syndrome)


    Some of you might recognise this. This is the CFS faces project from the CFIDS Association, the CAA. It's a really neat thing they have that goes around the country and shows up in shopping malls. But the point of the faces project is that it's an invisible illness. The people that have this illness look fine, but they are not fine. And it's a very important message, because Chronic Fatigue Syndrome's a very debilitating condition.
    And there's been research that looked at how severely ill people are with Chronic Fatigue Syndrome.
    And it was the same, or worse than, congestive heart failure.
    The same, or worse than, very late stage AIDS.
    It's very impressive how very ill people are.
    And of course, most of you all are living it, but some of you might not realise that the science bears that out.

    It's been a hard illness to understand, because we had to diagnose it by symptoms only, OK.
    But the symptoms are pretty impressive, and some things are special, to really help make the diagnosis.
    One is the profound nature of the fatigue. It's not that 'Oh I'm tired to fatigue', it's the profoundly debilitating fatigue that prevents you from being able to do the normal things that people try do in their lives. And they defined that by saying, you cannot do at least one aspect of your life well.
    If you're working, that's more or less all you're doing, you're not taking care of your family.
    If you're trying to take care of your family, you probably aren't having any real social or recreational time, or work for that matter.
    So it takes away the very big, and crucial ways that we define ourselves as people, and how we value our contribution.
    But it's also defined by pain and inflammation. Muscle pain, joint pain, sore throat, tender lymph nodes, headaches, non-restorative sleep and most importantly, concentration and cognitive problems that can interfere with your ability to be as quick as you would like to be.

    Slide shown during previous section:

    Definition - CFS

    >6mo. dibilitating fatigue, unexplained by preexisting illness or psychiatric co morbidity, and at least 4 of eight symptoms criteria:

    post exertional relapse
    concentration and cognitive complaints
    myalgia
    arthralgia
    sore throat
    painful lymph nodes
    new headaches
    unrefreshing sleep



    There's also a clinical case definition. That was a research case definition.
    The clinical case definition was more of a teaching thing, to try to teach doctors who use this that there is something underneath all of that.
    That those are autonomic symptoms.
    That those are immune symptoms.
    That those are neuro-endocrine symptoms.
    Then they cluster those symptoms around the type of underlying system that's acting badly to cause those symptoms.
    This was a clinical case definition made by an international group in Canada, and I was a member of that group.

    I wasn't a member of that first group.
    I didn't name this disease. No one blame me.
    I was not there. I was not invited.

    Slide shown during previous section:

    CFS/ME Clinical Case Definition

    1 Substantial reduction in activity level due to new onset, persistent fatigue
    2 Post exertional malaise
    3 Sleep dysfunction
    4 Pain - myalgia, headaches
    5 Neurologic/Cognitive Manifestations
    6 At least one symptom from 2 of the following:
    Autonomic manifestations eg. OI, IBS
    Neuroendocrine manifestations eg. temperature intolerance, weight change
    Immune manifestations eg. tender lymph nodes, sore throat, flu-like symptoms
    Link to full report www.iacfs.net




    There are overlapping conditions.
    About 60% of the people with Chronic Fatigue Syndrome also have Fibromyalgia.
    Fibromyalgia is a painful condition, and that's what it is, it's a painful condition.
    It's defined by pain. You poke people in eleven different places, sorry, eighteen different places
    and if a lot of them, or more hurt, then they may meet the case definition.

    Slide shown during previous section:

    Other overlapping conditions

    Fibromyalgia

    Gulf War Syndrome (VA CSP 16 fold increased risk of CFS in Gulf War veterans)
    Eisen et al Ann Int (?) Med 2005 7.142(11)??1

    Multiple Chemical Sensitivity

    (plus image of 'Classic 18 Tender Points')




    But underneath that is a very complicated cause.
    There's a pain ramp up that happens in the spinal cord and brain, sending more and more and more pain signals up to the pain centre, and even very light, non painful touch can be very, very painful.
    Even.. you've heard people say, even my skin hurts.


    Slide shown during previous section:

    Fybromyalgia

    Based on the 1990 ACR classification guidelines:

    Historical feature = widespread (axial) pain of 3 months or more

    Physical finding = pain in at least 3 of the 4 body segments + a finding of at least 11 tender points on digital palpation of 18 designated tender points

    No exclusion criteria

    (??? et al, 1994; Portenoy et al, 1996; Wall et al, 1994; Wolk (?) M, 2002)

    (plus image of 'Classic 18 Tender Points')




    Gulf War Illness is something near and dear to my heart, and I know Mac (? Matt?) cause we both do research in this area.
    We have some Gulf War guys in the audience here.
    Gulf War Illness can also meet the case definition for Chronic Fatigue Syndrome. They overlap, and much of our research in Miami is trying to decide if they are the same or not.
    And if they are, you know, if the treatments might be the same.
    That's one of the main focuses we have, and we have some really cool studies going on.
    And I want the Gulf War guys to know, that I shipped off those boxes to the Whittemore Peterson Institute yesterday, so anyone who's in my Gulf War study, is having their XMRV serology and blood testing done very shortly. So I'll be getting back to you as soon as they tell me. So we'll know if it's truly overlapping in the same ways.

    And then Multiple Chemical Sensitivity is an even more poorly understood, difficult illness, to have, and a difficult illness to diagnose

    One of the issues with Chronic Fatigue Syndrome all along has been the attitude of physicians. And there have been a number of studies done (Lenny Jason (?) did one, this is a different one), that looked at the attitudes of doctors who don't even recognise the illness is real. And it works out about 50/50. And the doctors that do, generally have a family member who's ill.
    Generally speaking their connection's not their speciality or their training or anything else, it's that they're linked personally to a person with the illness.

    Slide shown during previous section:

    Attitudes of Physicians

    Of 811 GP's 44% did not feel confident making the diagnosis, 41% did not feel confident treating

    More likely to have confidence if they had a friend or family member with CFS, having more patients with CFS.

    Concludes that education emphasising acceptance of CFS as a real entity results in improved confidence in treatment

    (Couldn't read source, ended (April 1))



    So, what about viruses?
    We found most of the work that's been done on Chronic Fatigue Syndrome has been on mental illness, and depression, and atypical depression. And the patients have gotten a bad rap.
    And I'm gonna say this in sort of in a funny way.
    This is my own personal opinion, that part of the reason that there's so much psychology work done is that this is a very interesting illness from the psychologist's point of view. As is any really serious chronic illness.
    Patients with HIV have a huge mental health literature.
    Patients with renal disease, or renal failure, have a huge mental health literature.
    Because one thing you can really do for people with a chronic disease, is try to help them live with it, cope with it better, and try to have the best quality of life that is reasonable.
    And so, most of that mental health literature is actually focused on that.
    All that Cognitive Behavioural Therapy work and so on is focused on that.
    I think where Chronic Fatigue patients got really angry, and I totally understand, is when some researchers went off on the tangent that this is some atypical form of some primary mental condition.
    And I think we disproved that in 1993 or 4. I mean it was a long, long time ago that all those endocrine studies came out that showed that basically the illness goes in the opposite direction from all the neuro-endocrine point of view, than depression or that sort of thing.
    But still, there's been this cloud lying over folks with this illness because we never came up with a very clear understanding of what the primary cause might be.
    And much of the excitement about this virus, is that it is itself a candidate for being a primary cause.
    So it's a very exciting time.


    Slide shown during previous section:

    Viruses and CFS/ME

    Much of the research here and internationally has examined the role of the immune system and possible chronic infection in CFS

    The viruses studied all have several things in common:
    they infect cell of the immune system and the neurologic system;
    they are capable of causing latent infects;
    they can reactivate under certain conditions
  5. fresh_eyes

    fresh_eyes happy to be here

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    mountains of north carolina
    Thank you, blackbird! :)
  6. blackbird

    blackbird caged.

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    1 Blackbird
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    4 Kim
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    6 Kim
    7 ComeBackShane is doing
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    10
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    12 not up yet


    No problem.
    Should have finished it tomorrow though......

    Will have to take a break, see if any are left later in the week and do more.
    Or maybe do some tidying for others.
    There are a few bits where I couldn't quite understand what was said, so that first segment needs a proof read and some editing.
  7. gracenote

    gracenote All shall be well . . .

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    interesting illness from the psychologist's point of view

    This is what I've been hoping to see articulated and I think Nancy Klimas did it well.

    Thank you blackbird and fds66 and Kim. My brain thanks you for this. Very happy brain.
  8. Koan

    Koan Be the change.

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    Ok, I'll do 2 but I think someone will have to proof it because I can't read any of these. I think I can transcribe one so long as I touch type.
  9. gracenote

    gracenote All shall be well . . .

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    dibs on 2

    Hey Koan, cfs since has already put dibs on 2.
  10. Cort

    Cort Phoenix Rising Founder

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    Competition over who gets to do what - I like it!

    I loved that statement that gracenote highlighted. I too feel like I've been waiting for years for something like that. I'll get #1 in the website - thanks Blackbird.

    This is where I'm posting them on the Phoenix Rising Website by the way: I'll have to turn it into a couple of pages

    http://aboutmecfs.org/Rsrch/XMRVKlimas.aspx
  11. CBS

    CBS Senior Member

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    Section 7 - Research

    Nancy Klimas

    (Slide – Segments)
    Section 7: What’s Next in Research?


    (Slide – What happens next?)

    What happens next is very clear, research.

    Dirty word but the most important word in the whole game. Gotta know that research has to happen and it is the research that gives us effective therapy.

    I started HIV in 1983, is when I finished my residency. And so I started right here at the University of Miami and I started right in the HIV program before we knew the name of that bug. And in 1984, the bug was named, and in 1988 the first anti-viral was tried, it was a little bit helpful but it wasn’t all that effective. In 1994 we had three drug combinations that just kicked butt. In the time between 1983 and 1994 I lost 1000 patients. It was devastating, I was emotionally a wreck every time I went to clinic. And now I am going over to my HIV clinic at the VA and I am taking care of blood pressure, I am taking care of hypertension and cholesterol and the usual stuff. And you know, HIV sometimes does it’s dirty deed which is to say to make people a little more prone to cancer, sometimes we get some cancers, but most of my HIV guys are really healthy.

    I got into a little trouble in the New York Times for saying this, did anyone see me in that Times? I said my HIV guys are hale and hardy and my Chronic Fatigue patients are not, they are not. And that’s true, but I am very privileged to have been a doctor caring for all those people and then being there when the time happened when these things changed. You know, there I was an HIV doctor, dying patients, going to funerals, and taking my patients, doing rounds of hospice on my way to rounds on the regular wards and then I was there and in a matter of a few months I had patients that went from 80 pounds to 180 pounds.

    And I got guys that I take care of now and I remember them from when they were 80 pounds. I have one guy that played basketball six hours a day, he’s the most muscle bound handsome guy you ever saw and he was nothing but bones and that’s because I stuck it out and I feel really privileged that I got to be their doctor and see them all the way through but that’s how I feel about Chronic Fatigue Syndrome right now. I mean, I’ve paid my dues. You guys have certainly paid worse dues than I’ve had to pay on this. But I’ve paid my dues, I’ve had the privilege of being your doctor and watching you bear through all of this. And I really think we’re at this point now where I am going to get to be there during this wonderful transition from really sick to hale and hearty and that’s what I am really looking forward to. So we’re going to do that, right? (applause!).

    So what’s next with research?

    (Slide - What Happens next?)

    And the research is going to be a lot of different kinds of research. We’re going to have to do basic science research to understand this virus. The first step is just to validate that study that was October 8th in Science which is already going on, but there are probably ten other studies going on. Now I am going to do that too. To see how far it extends. Is it in Gulf War Illness? Is it in Fibromyalgia? Is it in autism? That’s a really interesting question. I mean for my nephew’s sake, I really hope it’s true. And so on. There are some real possibilities here. This virus has been a sneaky virus messing people up in more than one way for a while, or it might just be a Chronic Fatigue/ME virus.

    The next step is in culture - what drugs work? What drugs that we already have that we can quickly roll out in clinical trials work? Meanwhile, in the back, what other drugs are on the shelf that might be even better than the one that are already out there for HIV? And we’ll be able to do those phase one and phase two trials very quickly. They could happen very, very quickly. There’s a lot of motivation here. You guys are sick but there’s also one million of you, you’re a hell of a market. And that’s just the United States.

    So if we have a biomarker that we can diagnose with, which is a huge step forward and we have a treatment, a potential treatment, then I think you’ll have the attention of Burroughs-Wellcome, and Roch and Abbott and all the companies that have anti-retrovirals as their primary deal. The immuno-modulators, don’t leave us immunologists out of the big push forward. I think immuno-modulators may well have a role.

    Sub-grouping patients by different things, could be, here’s a big make believe, but what if it is autism? What if you get a virus in your head when you’re 18 months old? What if you activate a virus that was in your genome, vertical transmission when your 18 months old, 12 months old, and what’s vulnerable at that moment in your life is your brain. So, there’s a lot of work to do down that line.

    Then there’s phase one, two, three trials; the subgroups; co-infection work; and then finally, basically, what’s our long term plan? How are we going to treat people at different stages of this illness for how long, with what, and so on?

    But hey, we can have some marching orders here. These are things we know how to do. We’re good at this. This is what’s so much fun is that so many people know how to do this kind of work. They’re going to be excited to get into it. So Phase One are those little small trials where we just try it out, there’s no placebo. It’s mostly a safety study but also an efficacy study. Phase Two is the next step when you do a bigger study, usually 30-50 people in each arm and there’s a placebo involved.

    (Slide – Clinical Trials)

    Phase Three is when you saw Phase Two looked pretty good so you go for it and you get a lot of money together and you do studies on 400 to 500 people in each arm.

    We have one other little advantage right now, and I hope it will hold up but right now the FDA perceives Chronic Fatigue Syndrome as an Orphan Disease, an Orphan Drug Disease. That’s partly (determined) by how many people have it and they’re saying because less than 200,000 people have been identified with it, and that’s true, only 15% of patients have been diagnosed, that we will fit under the Orphan Drug Guidelines, which lets things move a little bit faster, you can get things out to market without quite as many steps. That would be good.

    (Slide – One do-all design)

    This is just one kind of design I threw up here just to show you what people would think about. I thought this one up and no one’s going to believe me but I think it’s a great idea which would be an anti-(retro)viral (Group A) on the top; an anti-(retro)viral with an anti herpes family drug on the middle (Group C); just the anti-herpes viral drug on another arm (Group B); and then a placebo on the fourth (Group D). So you’d actually do four arms at once and answer all the questions in one fell swoop.

    There’s a neat anti-herpes family anti-viral that is in a phase three trial that’s very low toxicity that a company has in California. They just presented at the infectious disease meeting, their infectious mononucleosis data and it was really good. So it might be a drug that’s less toxic than the one we already have (from audience – What drug is it?). It doesn’t have a name yet, it’s still all numbers. I’ll tell you about it. It’s exciting. So we’ll see. There’s all kinds of things to think about.

    (Slide – What would that take?)

    So what is that going to take?

    It’s going to take basic scientists and clinical scientists that are working together doing the in vitro work. Funding. Interested companies that want to do the big clinical trials. And ultimately, an NIH clinical trials group to work together to make it happen.

    How fast it happens all depends on the money. It always about the money.
  12. cfs since 1998

    cfs since 1998 *****

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    Section 2: Viruses & CFS/ME; WPI & XMRV

    The other half of the medical literature was looking at pathophysiology, just what's wrong. And this group in Miami has from the very first day, actually the very first group, to look at the immune system as a major mediator of the cause of this illness. In 1989 we wrote a paper from our first series of patients that show that the chronic fatigue patients had immune activation and poor antiviral cell function. We wrote that paper in the Journal of Clinical Microbiology back at the beginning, very early on, and a couple papers right after by Jay Leevy's group that say the same thing, and that’s what launched us in this field.

    So we've been focused on viruses from the very first day. So what do we know. The very first day we looked at Epstein-Barr virus and other herpes family viruses. Epstein-Barr and Cytomegalovirus were the first viruses that were looked at. Dr. Leevy's paper and my own and others said, what we saw in all these virus serologies we looked at, when we looked at the antibodies, was EBV is there, we can't say it's not. There's all kinds of other serology for other things that didn't pan out. But Epstein-Barr over the years, time after time, there's been at least a subgroup of patients that looked to have a higher level of Epstein-Barr virus than they should have. CMV a little less so.

    In the 1990s two things happened. First, Elaine DeFreitas and Mike Holmes from New Zealand both published papers at about the same time, 1991-92, saying that they saw a retrovirus in chronic fatigue syndrome. And Dr. Holmes paper had all these beautiful scanning electron micrographs of little budding viruses coming off of white blood cells that looked for all the world like a retrovirus. And Elaine DeFreitas who was at the Wistar Institute at the time published a paper that said she had fairly good evidence that there was a retrovirus.

    What happened next was a little complicated, partly from our point of view--we recruited Elaine down at the University of Miami and she joined our faculty, but unfortunately she became very ill very shortly after and left. So we never got to pursue her work which is a shame. I’m sure she’s feeling very good right now about this new work. The other thing that happened was that the Centers for Disease Control published a paper and presented at a number of conferences that they failed to find that retrovirus. And it was a shame because that was how it was left. There was this positive finding from two different groups, one group saying absolutely not, and then nothing much went further from there. So we lost unfortunately that time from then to now. I’ll have to say though, we didn’t know this virus hadn’t been identified yet. I don’t think it would have been a rapid thing there, but certainly we would have been further along than we were now.

    The HHV-6 was the second big thing that happened in the middle of the 90s. This other new virus was discovered, human herpes virus type 6, the virus that also causes the three day measles, another childhood virus—another herpes family virus. And it turned out to be reactivated in a whole lot more people than the Epstein-Barr virus. So this was the first virus that got a lot of credibility as really being there by all the groups that were looking. And there was some excellent work, Dharam Ablashi who was the discoverer of the virus, discovered the virus, Connie Knox, and a private foundation, the HHV-6 foundation, that did some excellent fundraising and really did some pointed research to drive this home and push that along to the point where clinical trials had been going on to try to suppress this virus, with some efficacy. So that was very exciting.

    So then we enter this decade and we’ve got enteroviruses. That’s Dr. Chia’s work, where he did a lot of gastric biopsies and he found coxsackie virus, which is a whole different family of viruses also very common reactivated, and he found it in the gut wall with a gastroenterologist who was biopsying stomach. And they found virus.

    So it made us stop and think, well wait a minute, if the immune system is broken enough that more than one kind of virus is getting out, how are we going to focus our work so that we’re covering this immune system problem. Instead of trying to pick off one virus at a time should we maybe be backing up and saying can we fix the immune system that’s broken and prevent these common viruses from reactivating.

    And then finally we come to this definite landmark paper of October 8th in Science by the Whittemore Peterson’s group with Judy Mikovits and Vince Lombardi. It is a very important paper, and the reason why this paper is so important is that this virus is a really good explanation for why the immune system is broken, unlike the others. This one would explain why the immune system is broken. And it is also a really important paper because this virus is not common. There are very few people that have this virus, and yet most chronic fatigue patients in their study did have this virus, and so it’s a candidate virus for causation. And that’s, I think, why everyone’s so darn excited.

    I put up this slide because this is going to be videod and someone is going to read this who’s not here, and I want people to know when I’m using someone else’s slides. I borrowed these slides from Dan Peterson and the Whittemore Peterson foundation. These are the people that work him on this, and even though I wasn’t part of this particular group, I feel like I’m a member of their family because I spent a lot of time in Reno when they were first setting up, and I really admire these people. They’re really very talented. So there at the Whittemore Peterson Insitute...even though Annette Whittemore’s name is not on this slide, it should be right up there on the top. Annette Whittemore is the reason why the Whittemore Peterson Insitute came to be. Harvey and Annette are these lovely people who know how to get something done. Their daughter is very ill, and they realized that they were getting the best possible care because Dan Peterson was their doctor. And they said how sad it is for people who don’t have access to such talented doctors. So they established this, the WPI, Whittemore Peterson Institute.

    And then in a very targeted way and a very brilliant way, they said this is the kind of research we want to do what we want to focus on, and they made a team that could do that. They were absolutely virus hunters, they were looking for viruses, and they put a team together to find viruses. And they got an excellent team put together, and by gosh, two years into this work and they have scooped us off. Good job. So they did a fine job. And they did that with their colleagues at the NCI, Frank Ruscetti, who’s a very famous virus hunter in oncology, is one of their senior partners and that whole team there, and then Bob Silverman at the Cleveland Clinic with Dr. Gupta. These are two people, Dr. Silverman’s one of the discoverers of XMRV several years ago and he was a member of the team that went after it. So it’s very impressive work.

    ---

    Note: Two names I hadn't heard before, so am not sure I spelled them right: Jay Leevy and Connie Knox.
  13. flybro

    flybro Senior Member

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    I love you guys..

    Just wanted to say you guys really are the best.


    :) :) :) :) :) :)
  14. anne_likes_red

    anne_likes_red Senior Member

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    Transcribers - you're Stars.

    Thank you all so much!!
  15. Koan

    Koan Be the change.

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    NOOOOOOOOOOOOO!

    The other half of the medical literature was looking at pathophysiology – just what’s wrong. And this group, in Miami had, from the very first day, actually from the very first group, to look at the immune system as a major mediator of the cause of this illness. Since our paper came out in 1989 – I’m getting older and older as my daughter tries to make me look younger and younger – but in 1989 we wrote a paper from our first series of patients which showed that Chronic Fatigue patients had immune activation and poor anti-viral cell function. I wrote that paper in the Journal of Clinical Microbiology back at the beginning… very early on. And, a couple of papers right after by J Levy’s group which said the same thing and that’s what launched us into this field.

    So, we’ve been focused on viruses from the very first day. So, when did we know? The very first day. We looked at Epstein Barr virus and other herpes family viruses. Epstein Barr and cytomegalovirus were the first viruses that were looked at and Dr. Levy’s paper, and my own and others, said, what we saw in all these virus serologies we looked at, when we looked at the antibodies was EBV’s there, you can’t say it’s not. There was all kinds of other serology for other things that didn’t pan out but Epstein Barr, time after time, over the years, there’s been at least a sub-group of patients that looked to have a higher level of Epstein Barr virus than they should have. CMV a little less so.

    In the 1990s two things happened. First, Elaine DeFreitas and Mike Holmes, from New Zealand, both published papers, about the same time – 1991/1992 – saying that they saw a retrovirus in Chronic Fatigue Syndrome. And, Dr. Holmes paper had all these beautiful scanning electon-micrographs of little budding viruses coming off a white blood cell that looked, for all the world, like a retro-virus. And, Elaine DeFreitas, who was at the Whitstar CHECK! Institute at the time, gave a paper and then published a paper, published that paper, that said that she had fairly good evidence that their was a retro-virus.

    What happened next was a little complicated. Partly, you know, from our group’s point of view, we recruited Elaine down to the University of Miami and she joined our faculty, and, unfortunately, she became very ill very shortly thereafter and left, so we never got to pursue her work, which is a shame. I’m sure she’s feeling very good right now about this new work, she has to be feeling pretty darn good.

    The other thing that happened was that the Centers for Disease Control published a paper, and presented it at a number of conferences, that they failed to find that retrovirus. And it was a shame because that was how it was left – that there was this positive finding from two different groups, one group saying: absolutely not, and then nothing went much further from there. So, we lost, unfortunately, that time – from that time to now.

    I have to say, though, this virus hadn’t been identified yet, and I’m not quite sure… I don’t think it would have been a rapid thing, but certainly we would have been further along than we are now. Certainly we would have been further along had we pursued it.

    The HHV6 was the second big thing that happened. In the middle of the ‘90s this other new virus was discovered: human herpes virus type 6. The virus that also causes the 3 day measles -- another childhood virus, another herpes family virus. And it turned out to be reactivated in a whole lot more people than the Epstein Barr virus. So, this was the first virus that got a lot of credibility as really being there by a all the groups that were looking. And there was some excellent work by Connie Knox ?3:55? and Dr. Ablashi who was the discoverer of the virus, Connie Knox (?), some excellent groups. And, a private foundation, The HHV6 foundation that did some excellent fund raising and really did some pointed research to drive this home and push that along to the point that clinical trials had been going on to try to suppress this virus with some efficacy. So that was very exciting.

    So, then we enter this decade and we’ve got enteroviruses, that’s Dr. Chia’s work, who did a lot of gastric biopsies, and he found coxacie virus which is a whole different family of viruses, also very common, reactivated. And, he found it in the gut wall. He’s a gastroenterologist and he was biopsying stomach and he found virus.

    So, it made us stop and think and go: Wait a minute, if this immune system is broken enough that more than one kind of virus is getting out, how are we going to focus our work so that we’re covering this immune system problem instead of trying to pick off one virus at a time? Should we maybe be backing up and fix the immune system that’s broken and prevent these common viruses from reactivating.

    And then, finally, we come to this landmark paper of October 8th, in Science, by the Whittemore Peterson Group, with Judy Mikovitz and Vince Lombardi, and it is a very important paper. And, the reason why this paper is so important is that this virus is a really good explanation for why the immune system is broken. Unlike the others, this one would explain why the immune system is broken. And, it is also a really important paper because this virus is not common. There are very few people that have this virus and yet most Chronic Fatigue patients in their study did have this virus, and so, it’s a candidate virus for causation. And, that’s, I think, why everyone is so darned excited.

    I put up this slide, I’m going to say, because it’s going to be videoed and someone’s going to read this who’s not here and I want to make sure that people know when I’m using somebody else’s slides. I borrowed these slides from Dan Peterson (laugh), some of them, and the Whittemore Peterson Foundation.

    These are the people who worked with them on this and even though I wasn’t a part of this particular group, I feel like I’m a member of their family because I spent a lot of time in Reno when they were setting up. I really admire these people, they are really very talented. So, they’re at the Whittemore Peterson Institute. Even though Annette Whittemore’s name is not on this slide, it should be right up there on the top. Annette Whittemore is the reason the Whittemore Peterson Institute came to be. Harvey and Annette are the lovely people who know how to get something done. Their daughter is very ill and they realized that they were getting the best possible care because they had Dan Peterson as their doctor and they said, “but how sad it is for people who don’t have access to such talented doctors”.

    So, they established the WPI, the Whittemore Peterson Institute and then, in a very targeted way, and a very brilliant way, they said: This is the kind of research we want to do, what we want to focus on. And, they made a team effort to do that and they were absolutely virus hunters. They were looking for viruses and they put a team together to find viruses and they got an excellent team put together and, by gosh, two years into this work, they have scooped us all. Good job. So, they did a fine job. And, they did that with their colleagues at the NCI. Frank ?????, who’s a very famous virus hunter in oncology, is one of their senior partners, and that whole team there. And then, Bob Silverman at the Cleveland Clinic with Dr. Gupta, these are the two people… Dr. Silverman is one of the discoverers of XMRV several years ago when he was a member of the team that went after it then. So, very impressive work.


    NO NO NO NO NO NO!

    :eek:




  16. anne_likes_red

    anne_likes_red Senior Member

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    Oh Koan!!

    I just don't know what to say... :eek:

    ...except that you are a Star of the highest order.
  17. anne_likes_red

    anne_likes_red Senior Member

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    It's Jay Levy.

    Great job :)
  18. Koan

    Koan Be the change.

    Messages:
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    NO

    :eek:

    no

    :eek:

    no
  19. Kati

    Kati Patient in training

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    Awww thanks to all the transcribers, even if it's been done twice :eek:. It's great to see people rallying to a cause like this and give everyone a chance to read /watch Nancy Klimas in action.

    She's great and would love to have her around in my neck of wood... Nancy, when you get tired of the sunshine of Miami, come and check out Vancouver- you can even come out for the Olympics, will lend you my appartment:D
  20. CBS

    CBS Senior Member

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    Western US
    Say it isn't so

    Koan,

    I am so sorry! I know how not easy that was. Wish I could do something to help. You still should get props for doing the transcribing.

    OUCH!

    Shane

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