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Lessons from ME/CFS: Finding Meaning in the Suffering
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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. _Kim_

    _Kim_ Guest

    No, no, no, no

    Oh Koan - don't even know what to say - except thanks

    I have been there - you know I have. We are such good helpers, it's only inevitable that we'll be stepping on each other's toes from time to time. I'm just sorry that they were your toes. OUCH!! :(
  2. Marylib

    Marylib Senior Member

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    for Koan

    You have my deepest sympathies.

    You need luxurious pillows on the burnout sofa. And a stiff drink -- in your case, a stiff drink of kale juice.
  3. Koan

    Koan Be the change.

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    I love you guys! I really do!

    But...

    no!

    :eek:

    and

    :p
  4. cfs since 1998

    cfs since 1998 *****

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    Sorry, I don't know what happened. I had already called it a few hours before, guess you didn't see it. Sorry :eek:
  5. Koan

    Koan Be the change.

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    Yes 98, you went and called it before I did not using your spidey senses to intuit that I would want to do that segment hours later!!!

    What were you thinking?!

    :p
  6. Sacajawea

    Sacajawea slightly bedraggled

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    Fantastic Transcripts!

    Koan...remember to breathe :D! I found myself going back and forth between the two number 2's and they're both fantastic, as are the whole lot-- you should be proud... (I've read 1 and 6 thoroughly, and will go back for more tomorrow)...so perhaps others have too and for comparison's sake we all end up learning some more...

    Gracenote, what a great idea for those who had the capability and drive to accomplish this...I get more out of reading so this is absolutely fabulous!

    I just hope I DON'T dream about slides tonight...

    SJ
  7. cfs since 1998

    cfs since 1998 *****

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    I must have been thinking, "That Koan, she's got over a thousand posts, something needs to be done to slow her down!"
  8. Koan

    Koan Be the change.

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    I can't read any of them.

    I just can't read that much text on a light.

    There are two places where mine is incomplete - a couple of names I was not sure of - but it doesn't matter now.

    Thanks for the reminder. I'm breathing. I'm also laughing

    :p

    no!
  9. Dr. Yes

    Dr. Yes Shame on You

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    That....was painful.....and yet.......hilarious......

    :eek::eek::):D
  10. fds66

    fds66 Senior Member

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    Oh no, simultaneous transcribing.

    I go to bed and you've all been hard at work. Morning now though so a new day ahead. Transcribing was OK for the first couple of paragraphs but got harder and harder. By the end of my section I think I was correcting everything at least twice. My fingers develop more and more dyslexia as time goes on. Brain totally mashed by the end of it.

    Well done to all of you. Team work!

    I think it now stands at:

    1 Blackbird
    2 cfs since 1998 and Koan
    3 Kim
    4 Kim
    5 not up yet
    6 Kim
    7 ComeBackShane
    8
    9 fds66
    10
    11fds66
    12 not up yet
  11. fds66

    fds66 Senior Member

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    Segment 11

    Here's segment 11. More Q&A. I am not sure I've got the names of the drugs right towards the end. Please correct me if I've got anything wrong. It had been edited so was a little jumpy in places but I think this is the gist of it.



    Segment 11:
    Q&A: Morton Fund
    Taking care of yourself

    (Question from audience) What is going to give us most bang for our buck right now. If weve got $50

    (Answer) Morton Fund, darling. No seriously, Morton Fund really, really needs your money. Were down to the last dollar. The reason why were able to do the genomic study is because of the Morton Fund. I was only allowed to do it on the Gulf War patients and I was able to take just $50,000 and do literally about a half a million dollars worth of research because I tagged it onto another study that was well funded.

    (Question from the audience) What do you think is the most important thing that we could be doing for ourselves?

    (Answer) Theres some very important things that you can do for yourselves, OK. And remember that the issues with chronic fatigue syndrome are that sleep is non-restorative, the immune system is over activated and not working and viruses reactivate, the endocrine system is acting a little funky and is a little disregulated and your autonomic nervous system which controls your blood pressure and pulse and all that is some sort of seesaw yo-yo thing that goes up and down. And the combination of all that makes you ill.

    First you need to , well its so simple, eat right. The rule of exercise exercise makes you relapse but you can exercise up to the point of relapse and youre better than not exercising at all. So, in a global way the easy way to call it is the five minute up, five minute down rule. You can do five minutes of something then you got to take a five minute break. Five minutes then another five minute break. You add it up by fives not 5, 10, 15, 20. 5,5; 5,5; and keep adding fives so you recondition, OK.

    Supplements. Supplements are aimed at first, good nutrition, but you are very, very deficient because you use up stuff very quickly so you use up the B vitamins and your minerals much faster than the next person. So a good multi vitamin, maybe double the normal dose of the multi vitamin plus a good B complex. Omega 3 fatty acids because they are anti inflammatory and quiet tumour necrosis factor but they dont do it til you get up into the 4g range so one of those little caps isnt enough. You need to get up to 4, 5, 6.

    CoQ10 was anti-fatiguing but it was just the best antioxidant tested. Just absolutely sucked up all those free radicals better than anything else. They used a dose of 60 twice a day but they are tiny little people so do the maths for yourself. If you are twice the size of a Japanese person you might just want to double up on that CoQ10.

    Inosine. Theres a drug called Isoprinosine, Immunovir, thats a pharmaceutical grade neutraceutical. Then we presented at the Reno meeting our own open label work with a hundred patients. And we had a very nice response, both immunologic and clinical response in the majority, 85% of the patients that took Isoprinosine which is Immunovir. Now, Inosine is the over the counter variation on that theme.

    If I can go back to sleep for a moment. Non-restorative sleep is a big problem for chronic fatigue patients. Its one of the diagnostic criteria. Anyone here whos ever had a restorative nights sleep with chronic fatigue can tell me that when they do have a good nights sleep they do have a better day. What we presented at the Reno meeting was our own review of charts and found a surprising number of chronic fatigue patients that develop apnoea over time, sleep apnoea. Youre so debilitated that you have a disabling fatigue, you have a justification for a proper sleep study. So I guess the studies.

    Theres a drug thats in clinical trial for fibromyalgia, its called Xyrem. Its a stage, slow wave sleep inducer and it puts people out very quickly in just 20 minutes, 10 minutes, sometimes 5 minutes. You take it at the bedside, you go down to a deep sleep. Now, during deep sleep is when you make your hormones at night and its a really important thing and most of you dont have any slow wave sleep. When you get your sleep studies youll find youve got none and so inducing slow wave sleep might be good. Xyrem has had a successful fibromyalgia clinical trial and it is at the FDA trying to get the fibro label on the drug so thats probably going to be the one thats going to be reimbursable by your health insurance claim.
  12. blackbird

    blackbird caged.

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    Sorry Koan, I missed segment 2 when I updated the 'work done' list after posting segment 1.

    Cort, I know others have mentioned not knowing what certain names are, and not quite understanding some parts. I have the same in segment 1, so it's not nearly ready to be 'properly posted'

    Anyone here want to do the proofreading?
  13. Parismountain

    Parismountain Senior Member

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    Cort --

    Cort is this Klimas lecture the one that's talked about that's embargoed?

    I'm up to watching segment four and the mention of vertical transmission, parent to child is mentioned and I remember you posting about having seen something very interesting on that subject but couldn't comment, that's sort of why I'm asking is this the presentation that was embargoed?

    Do we have a date on this lecture?

    I've been following threads in vBulletin every day and within the past say 3 days there was a lot of skepticism on the Whittemore's having somehow made a mistake and then this video hits and everyone is excited again. What a rollercoaster but are we now more positive in our thinking about XMRV being huge in CFS or are we still very skeptical because of things like the antibody test may be finding dna of another bug and subjects like that where it was explained in a post how Whittemore could be wrong.

    I know that's a lot of questions but somebody please jump in
  14. Rita

    Rita Senior Member

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    Many thanks

    Many , many,thanks for all transcribers.

    There are a lot of us that dont understand english speaked but only writed

    because we are not english or american citizens.
    CFSs patients all over the world
    are impatiens to know about XMRV,after suffer years of ignorance , maltreats and skepticism.

    I think Whittemore researchers deserve the Nobel Prize if XMRV is validated.

    Rita from Europe.
  15. _Kim_

    _Kim_ Guest

    Hi Rita

    Welcome to the forums. I'm so happy that the transcriptions are making the news readable. I hadn't even thought about how our work might help non-English speakers gain accessibility to this material.

    There are a few other translations from recent talks posted on here.
    garcia translated Dr. Peterson's talk from the CFSAC meeting in October.

    And I posted Dr. Enlander's lecture from a recent NJ conference.

    What language(s) do you speak?
  16. blackbird

    blackbird caged.

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    Same here, and Dr. Klimas talks faaast too.........
  17. _Kim_

    _Kim_ Guest

    Yes she does. But somehow she was easier to transcribe than Enlander - with his Irish accent and insertion of the word "actually" into every sentence (I edited those out of the transcription). But, then again...it's always easier to listen to someone that you're crushed out on. Sigh.
  18. Mark

    Mark Acting CEO

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    I think some people have been quite affected by the wait for test results, which led to a discussion about the antibody test, and some people have commented that the antibody test can show results for antibodies to other virus, not just XMRV. That led to a bit of a re-think about whether XMRV really is THE answer.

    However, one of the Klimas videos includes a slide which puts the question about antibodies to rest IMO. Klimas points out that the PCR test was positive for 67% - and that in testing after publication of the study, of the remaining 33 patients, 30 of them tested positive on a blood plasma test. This is a much more expensive test, and I don't think it's offered by the testers yet (correct me please someone if that's wrong). So the point is that the research remains valid for 95% of people with CFS tested. The point about antibodies is only significant in that it means that a positive antibody test result could in theory be caused by antibodies to some other similar virus - it does not guarantee you have XMRV. But the 95% and 98% association between CFS and XMRV remains valid because it's based on the PCR and plasma tests.

    Bottom line: yes there has been some re-evaluation and re-consideration of whether the overall findings might not be as strong as we hope. But once again, nobody has managed to come up with any reason to suspect that the findings are wrong. I personally remain convinced that there's no realistic way the research could be wrong.

    The overall picture is pretty clear, the nature of the virus and who it affects, roughly how it works, the association with MS and autism at least, are all pretty solid and you have to come up with some strange theories in order to doubt all that. Unfortunately what we're now realising is that we are now in a potentially stressful rollercoaster period which could last as long as a year or two, while we wait for scientists all round the world to definitively confirm what we already know. If you see anything doubting whether the results are valid, I'd suggest you feel free to ignore it as background noise; alternatively post it on here and people will no doubt pop up to explain why it's nonsense. I've recently been reading what some of the doubters and sceptics have to say about it all, and one thing's obvious: even though some are doctors and scientists specialising in other fields, they know far, far less about the relevant science than the people on this forum! All the doubts I've read so far have been based on an ignorance or misunderstanding of the scientific details.
  19. CBS

    CBS Senior Member

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    Section 8 - Spousal Support

    I don't see that section 8 has been done. It seems like an important section as it deals with "Research Funding and Advocacy." I started to look up some of the organizations she recommends on my own anyway. I can give it a try if it isn't already being done.

    Is anyone presently transcribing section 8?


    By the way, my wife came home last night and I asked her to watch the section I had transcribed. She said she was tired, wanted to turn off the computer and asked it there wasn't something she could just read instead. I fessed up to what I had done but said it was important because some on the forum were having a hard time with the videos. She knows its a tough balance between not being an idiot and feeling like I'm contributing to a community (something that would crush my soul to live without).

    Shane
  20. _Kim_

    _Kim_ Guest

    Shane, that would be great if you wanted to do section 8.

    Anyone else want to pitch in? Section 10 is also up for grabs.

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