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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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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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    Section 8 -

    Hope to have it by the end of the day.
  2. Rrrr

    Rrrr Senior Member

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    huge mega enormo thank you

    hi all,

    what a heroic job you all are doing. thank you!

    don't you think that you need to send this transcript to the organizers of the lecture, and to other CFS groups, so this effort does not have to be duplicated elsewhere? i know that 1000s of cfs folks will appreciate it. send to CAA? Co-cure?

    will the whole thing be posted, in its entirety and in order, elsewhere on this site?

    ~ THANK YOU THANK YOU THANK YOU ~

    very very grateful,
    rrrr
  3. _Kim_

    _Kim_ Guest

    Cort is intending on putting this on the Phoenix Rising site. When that's all done, we can send out messages to the community. I'll send Dan Moricoli a message now so that he knows the work is in progress.
  4. shrewsbury

    shrewsbury member

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    I add my thank you alls too. Your efforts on our behalves are soooooooooooo much appreciated.

    I've had a 'crush' on Nancy from the first time I heard her speak. She's such a breath of fresh air - smart, frank, funny, direct. Pulls no punches. On top of her game. I lose 1/2 the stress I unconsciously carry when she opens her mouth. I guess it's a sense of relief.


    rrrs idea about sharing your efforts is a great one IMHO. Cort is posting them all on Phoenix Rising. Cort, if all transcribers agree, could you send an FYI and a link to the transcriptions on Phoenix Rising to co-cure, the CAA, mefmaction.net and any other good info disseminating sites?

    thank you thank you thank you


    islandfinn:)

    ETA Shane - your wife, and your relationship with her, sounds delightful!
  5. Rita

    Rita Senior Member

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    I am Spanish and speak spanish and live in Spain. Im very thankful to these forums that help us so much to know about CFS , research and treatments. I read this forum since some weeks, never before have written, but I wanted to thank you all the effort to transcribe the videos of Dr Nancy Klimas.I dont know how you can do this so quickly . I want you know your effort is world wide .
    I have print also the other translations that also are very interesting.
    Thank you very much again
  6. Koan

    Koan Be the change.

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    Alright, has anyone else said they would do section 10?

    I can't believe I'm actually typing this.

    ETA It is the non English speakers that got me to put my hand up again.
  7. Koan

    Koan Be the change.

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    Alright, I am going to do section 10.

    speak now or...
  8. Koan

    Koan Be the change.

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    Tis one is only 1/2 as long as the other one! :p Thank you Thor!

    Can anyone proof this, please. I can't read any of these, not even teh ones I type.

    Also, I don't know how things like trials should be written. Is it "Phase 1" or "phase 1" or "phase one" or Phase One"? I have no clue.

    Also, English does not seem to be a language with which I have any familiarity. So... gleisyt wofen shlurrping.

    thanks!

    OH! Yeah! Phase I, Phase II, Phase III! That's it! Thanks Kati!

    ________________________________________________________________


    Question: If you were going to guess on a timetable for, number one, for the test, when they would have a good test? And, number two, when you would think they’re going to have a drug that’s going to help the symptoms? If you were going to guess right now, what do you think the timetable is?

    Nancy Klimas: Well, number one is easy, I think number one will come very quickly.

    Question: I think six months…

    Nancy Klimas: Yeah, I think six months is possible.

    Question: What about drug therapy/treatment?

    Nancy Klimas: How fast could you do a Phase I, a Phase II and a Phase III? And, if we’re considered “orphan”, which is the big if, Phase IIs can, in the “orphan” world, be something called “a II slash III” [a II/III]. You can start it as a small study and, if it’s looking good, you can just roll it right on into the Phase III. You can keep on going. And, the FDA typically requires two Phase III studies for a drug approval - two years, three years? It could be very quick.

    Question: When I fly from north to south, it seems that I really crash afterwards, I find it really hard to recover from that.

    Nancy Klimas: You guys are about a litre short in blood volume, ok? If I’m sitting at five litres, you’re sitting at four. So, you’re really, really sensitive to blood volume changes. If you’re a little dry, you crash. You’ve got to hydrate so aggressively when you’re in dry areas.

    Question: Unfortunately, I’m not one of your patients. I’ve tried for many years to get in but…

    Nancy Klimas: This tells you how terrible this is: I have a 350 patient waiting list. Ok, and there’s no place else. And, I can’t practice… I mean, there’s no way to do it all. That’s why, with the help of Hanna, we were putting together this clinic. A model clinic open in Kendal – we’re going to have our opening in December. But the point of it is…

    Question: Can I ask something else?

    Nancy Klimas: Yeah, sure.

    Question: Some of us may not be able to afford the clinic. That’s a concern for me.

    Nancy Klimas: Right, that’s why we’re growing the University of Miami clinic at the same time. I’ll just say, I wish I could solve this problem for everybody. But, at the University of Miami we have very generous patients who donated a salary line for a physician to do nothing but Chronic Fatigue Syndrome. Which is amazing! It’s taken us a little while but we have the doctor hired. She’s going to start in January and we will more than quadruple the volume of our clinic here at the University of Miami which takes all insurance.

    Question: How can we get into research…

    Nancy Klimas: Oh, you don’t need to be a patient to be in a study. Studies are for everybody and you don’t pay to be in a study, in fact, often the study pays for you.

    Let me talk about research for a moment. This tele-health study is a really cool study. It’s the brainchild of years and years of research where we found that Cognitive Behavioural Therapy can really help people take control of their lives. The first studies we did were group therapy here and you had to get here and some of our patients were too sick to get here. And, we didn’t know whether or not we could generalize and say: Yeah, it’s great for everybody. So, we designed this other study and, at home, you take the group on the phone, it’s a tele-health - they give you this phone and fix you up with a group and there’s a Cognitive Behavioural Therapy group on the phone. It’s very neat.

    We also have the “Good Day/Bad Day” study I referred to before. I don’t know who’s here from my group besides Mack, here. We still have room for, I think, 70 more patients in that study – lots of room. That’s a neat study because we’re trying to develop bio-markers and we see people four times and we do these very expensive and comprehensive evaluations with all kinds of immune and other kinds of lab tests - they’re all yours, free, they pay you $20 to come.

    We have the Gulf War Illness study that has a Chronic Fatigue Syndrome group. And, that is a genomic study.

    So, the point of our group here at the University of Miami has always been to advance the science. To advance the science, we have to have study subjects and, frankly, my original reason why I had a clinic was so that somebody was taking care of people so that I could recruit my studies. But, then I got sucked in by you all and I love being your doctor.
  9. Kati

    Kati Patient in training

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  10. CBS

    CBS Senior Member

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    My Hero!

    She's my hero!
  11. Koan

    Koan Be the change.

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    Kati,

    many thanks... Phase I, Phase II, Phase III

    (Slaps self upside head!)

    Ok, I'm done!

    :D
  12. fresh_eyes

    fresh_eyes happy to be here

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    mountains of north carolina
    @the Transcription Corps: Wow, just wow. Thanks for your efforts, CFS heroes.

    Parismountain, I believe the embargoed lecture was/is Judy Mikovits, and is still embargoed.

    Rita, bienvenida! Me alegre tener visitantes de otros paises aqui. (Was that OK? :eek:)
  13. Rita

    Rita Senior Member

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    Yes, fresh eyes, its all right, but " me alegro" (Im happy):)



    Huge work for a fatigated people !!!!!!!!!
  14. CBS

    CBS Senior Member

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    Section 8 - done (almost)

    I have completed section 8 but as Dr. Klimas refers to several deserving organizations for funding as well as avenues for advocacy, I am waiting to hear back from a few people who's summaries I would like to add as an addendum. I do hope that I will have their permission by tomorrow. If not, I will submit the section and my own work in the addendum, then add the rest as permission is received.

    Shane
  15. Cort

    Cort Phoenix Rising Founder

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    Well they're getting posted problems or not. :). I'm correcting a few names as I go - most of it looks really good, though. Which section is that last one - the short Q&A - from?

    The first part is http://aboutmecfs.org/Rsrch/XMRVKlimas.aspx

    I'm still fixing the formatting.

    Dr. Mikovits talk was embargoed - perhaps because she was talking about evidence and perhaps because she is the lead author and has to be more careful.
  16. gracenote

    gracenote All shall be well . . .

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    grateful for Cort

    Cort, I think what you have done, and are doing, with Phoenix Rising is amazing. And this forum is amazing. I have so much gratitude for all that you have birthed here, and all the good you've attracted into this one very special place.

    Thank you, thank you, thank you.

    Gracenote
  17. CBS

    CBS Senior Member

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    Section 8

    Dr. Nancy Klimas Lecture
    Section 8 Research Funding & Advocacy

    (Slide Sections Overview)


    When you get down to it, the reason why this happened this fast is the Whittemores put their own money into it. They didnt go through the NIH.

    Slide The Importance of Philanthropy
    • This Huge finding was funded primarily through private donations
    • Private donations give the investigator the flexibility to jump on a finding this important, and not wait the 12 to 18 months required for NIH grant preparation, submission, review and funding (Though, believe me that this is happening too!)


    Ive been to their fundraisers, They put on these glorious fundraisers, they can raise a million dollars in an evening. Its amazing. And they raised enough money and put some people together and in two years they did this work, they didnt have to wait for a review process and wait for the cycle, cycle, cycle.

    Right now if I wrote a grant today to do this it would be submitted in January, it would be reviewed in March, it would go to council in July, it would be funded in September and I would get to start a year from now. So private money sometimes is the best money, particularly when youre on the edge of something really, really big like this.

    So certainly, one of the biggest things that going to happen right now is fund raising, it is going to be private foundation type fund raising. Its terribly important. In addition to doing the stuff were going to do with the NIH and all of the other funding from federal agencies that do this kind of thing. Its going to be everybody working together.

    So, philanthropy is really important. And I put this slide up, not just for the people in the room but because were putting this video on the web and I am hoping its going to reach a lot of voices.

    Slide Importance of Philanthropy
    • If you were waiting to donate, now is the time the difference could be the difference of years until effective therapy strategies are worked out and in place.
    • Consider:
    • The University of Miami Morton Fund, in memory of David Morton who died as a result of CFS
    • The IACFS/ME research fund
    • The Whittemore-Peterson Institute
    • The CAA research fund
    • The ME/CFS Pocket Money Research Fund at www.pocketmoneyfund.org



    This is the time to be philanthropic in this disease. This is your moment. This is the time your dollar makes the biggest possible difference. Hear me say that never has there been a more critical time to invest your philanthropic dollar in this disease. We wouldnt want to you to take away from some other diseases but do it anyway. Jump Ship. Come on over because we really need this money right now to do this incredibly important work.

    And we are doing the other important work that it takes to get grants through the more traditional avenues but that will take time. And time that you guys are out of. You are ready for this to happen. I know you are. Everyone is begging me for the next step and we dont have it because we need to do the science.

    So what kinds of places might you put your money?

    Slide - Importance of Philanthropy


    Well, Im going to make a pitch for University of Miami right here and the Morton Fund (https://www6.miami.edu/campaign/gift/onlinegiving.html?unit=16). Beth Goldberg who put all of this together with the help of Pandora (http://www.pandoranet.info/) and Dan Moricoli. We have a fund called the Morton Fund, its named after a young man that died of Chronic Fatigue related complications some years back and has been my main research donation tool here at the University of Miami. Theres also the Whittemore-Peterson Institute; the CFIDS Association has an excellent donation account; the IACFS/ME which is the professional group that I was president of not very long ago. And then Dan just put together this pocket fund web-site. A lot of different ways you could give where it would make a difference. But do think about that.

    I didnt put on the international links. I meant to do a little research before I did this but because this is videoed and it will be international I would ask people internationally to think about their own foundations,

    I know New Zealand has a terrific group, the ANZMES group (http://www.anzmes.org.nz/); Excellent groups in England and Ireland; ME Trust (http://www.imet.ie/) and others. Barcelona has a fabulous group. There are a lot of different places where one can put their donation dollars and make a big difference. And it would be a really good year to make that your plan.

    Advocacy

    Slide The Importance of Advocacy
    • No better time than now to let your government (know) that 20 years of trivializing this devastating illness has stopped and it is payback time.
    • Demand clinical trials
    • Demand serious research funding, set aside dollars big enough to deal with an illness that has hurt 1 million Americans
    • Demand private disability companies retract the mental illness decisions and payback your lost income


    In addition to fund raising, now is an awful good moment you advocates. This is a good time and you are all advocates for your own illness. No better time than now because you have a passionate story. Youve spent 20 years with an illness thats been basically blown off (Audience 30!). A Long time. So, you know you are standing in a position where people should feel a little embarrassed, you know a lot embarrassed, a whole lot embarrassed. Your government should feel like they have a true obligation. I will say that at that CFSAC meeting last Thursday and Friday we were getting, people were hearing us. I think we were really being heard. And certainly, take that all the way; push it; go to your congress people, OK. You can only push the NIH, they have their budget and they are told to do every they have one pot and everybody wants it and they really cant be told to spend it this way or that, they end up having to divvy up one way.

    You go to congress, they can actually put aside money and there is one really important tool they have. There is something called the Office of Congressionally Mandated Research. This is an Army office. It comes out of the DOD budget, a very healthy budget one might say. The Office of Congressionally Mandated Research and that is absolutely the place where advocacy can put real committed dollars to an illness. Gulf War Illness has that, in fact my research right now is funded through the DOD, Gulf War Illness, through the Office of Congressionally Mandated Research. They are wonderful people, they are very professional, they know how to do peer review properly, they know how to get money into the hands of people who will really spent it in a and boy do they watch how you spend it. The Army - Ive never had so much oversight in my budget in my life.

    So, sitting in your seat Are you excited? Yeah, you should be! It is damn exciting! This is great! This is the good stuff; this is what youve been waiting for (lots of applause around the world!). I mean really Yea!
  18. Koan

    Koan Be the change.

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    ComeBackShane,

    That's beautiful! I'm so impressed I'm almost tempted to try to read it! It's simply beautiful!
  19. CBS

    CBS Senior Member

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    Thanks

    Dear Koan,

    Thank you. I wanted to try and make it easy to read. When you have the energy, I'm sure you'll find that the content is even better than the formatting!

    Shane
  20. Cort

    Cort Phoenix Rising Founder

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    Very nice ComeBackShane - You really got Koan going - (reading! :)). That one slid into the website nicely

    I have 1-4, 6-8, 10 and 11 - altho I'm not sure I have 10,11 right.

    Second half: http://aboutmecfs.org/Rsrch/XMRVKlimasII.aspx

    I'm missing 5 and 9 and anything past 11, if there is anything.

    This is the power of community in action that's for sure! Look at how much we can achieve working together.

    Think how much talent that's out there that isn't being used that just needs an outlet.

    Next project?

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