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Sept 10: CDC 'conference call' including Unger and Lipkin

Discussion in 'General ME/CFS News' started by Sasha, Aug 14, 2013.

  1. Otis

    Otis Señor Mumbler

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    I wish Ms. Sol's patients could remember more too. I've not heard of an exercise challenge that wasn't a challenge.
     
  2. SOC

    SOC Senior Member

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    What do you want to know? Are you assuming that it's necessary to exhaust muscles to identify the AT?
     
  3. Valentijn

    Valentijn Activity Level: 3

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    I was under the impression that one day testing is sufficient to find your aerobic threshold, but the PEM results specific to ME (and differentiated from deconditioning) are shown on Day 2. Hence while a one-off exercise might help in determining your limits for pacing and such, a two-day exercise was needed to differentiate between deconditioning for research, diagnostics, and/or proving disability.
     
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  4. Firestormm

    Firestormm Guest

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    Morning,

    Thanks ever so much for all the notes and comments.

    Am transcribing Lipkin now (03.00 in the morning!). Insomnia has it uses after all - who would have thought?

    We should get an article out as soon as humanely possible :)

    No doubt others will be posting on their blogs etc. I'd be interested to read any if y'all come across them and can re-post.

    Muchas gracias amigos :cool:
     
    madietodd, Sasha, beaker and 5 others like this.
  5. Tom Kindlon

    Tom Kindlon Senior Member

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    Just to point out as I don't think anyone has said it:

    Dr Lipkin, as well as encouraging people to lobby for more funding in US, also at one point encouraged people to donate (financially) to research if they were able.

    The numbers affected by ME/CFS worldwide are really quite big. Different people and families have different potentials in terms of how much they can donate or raise through other means. But the less that donating(or fundraising) is talked about, it can mean that even quite wealthy families don't donate. So I think it is useful to remind ourselves that lobbying isn't the only way to raise money for research. Sasha has explored ways to raise money in articles like this one: http://phoenixrising.me/archives/18475
     
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  6. Bob

    Bob

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  7. Bob

    Bob

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    Interesting about the 85% retrovirus find! I hope they will look into the possibility of reactivated endogenous retroviruses.
     
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  8. Bob

    Bob

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  9. Otis

    Otis Señor Mumbler

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    No, the underlying concern is that I'm not satisfied that measuring AT is a sufficient study of effects of exercise in M.E.

    Dr. Klimas and Ms. Sol are trying to use AT in an attempt to come up with an exercise protocol using the measured AT. That's a decidedly different goal and not what we're talking about here.

    ETA: Valentijn covered some of the same ground. I was away mid-edit.
     
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  10. SOC

    SOC Senior Member

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    I agree with you entirely. Measuring AT is not at all sufficient to study the effects of exercise in ME. It does show some abnormalities, but certainly not everything that could be discovered from a 2-day test.

    When you said
    I thought you had questions about Connie's testing protocol.
     
  11. Otis

    Otis Señor Mumbler

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    Well said Tom! The issue should be the brought every chance we get. We're so used to no money as a reality that we don't talk about it enough.
     
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  12. Dolphin

    Dolphin Senior Member

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    It would have been interesting to know the rate in the controls.
     
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  13. Kati

    Kati Patient in training

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    This still leaves room for them CDC and insurance companies to say we are deconditioned. Especially if they do not do blood tests afterwards .
     
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  14. waiting

    waiting Senior Member

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    Day 2 results can show a drop in AT (anaerobic threshold) from AT measured on Day 1 so even if you *only* want to know your AT (for pacing) you still need to do Day 2.
     
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  15. Hope123

    Hope123 Senior Member

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    Thanks for the notes everyone! Pre-occupied by other stuff at the moment and missed this talk. Some quick comments.

    1) Disappointing that they are still only doing a one-day test. I have a good inside source saying that even if they did the 2-day test on only a percentage of people at only a few of the sites, the results would still be worthwhile to pursue. I say we continue to keep asking them to consider the 2-day test.

    No matter how low the AT is for CFS patients on a 1-day test, this is also seen with other ilnesses and severe deconditioning. The unique part is for many CFS patients, in the 2-day test, the value declines further. Patients with deconditioning or other illnesses -- the AT increases or stays about the same on the 2nd day.

    2) I'm glad they're studying homebound groups. This is in large part due to patient advocacy pressure and stories and resulted in CFSAC recommending specifically studying the epidemiology of the severely ill in Oct. 2012. The other CFSAC recommendation that no one has acted on though is studying and monitoring any possible clusters of CFS.

    3) It would be good to see if the money from DHHS for IOM can be re-allocated to NIH but not sure how to do this.

    4) I have been visiting with various local Congressional offices in my area. $6 million was viewed by the staff in those offices as "decimal dust" in one staff's words -- e.g. it's practically NOTHING in the world of US gov't spending. We do need to work in a well-coordinated way to get funding for CFS research.

    5) Some of the findings are somewhat contradictory to what was found earlier. Several studies, including a WPI one looking at cytokine abnormalities, found ELEVATED rather than depressed IL-8.
     
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  16. vli

    vli

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    sorry if this seems a dumb question. How many ppl are willing to donate say US$10 to a fund? I'd be happy to give a lot more than that but if we set something up where everyone gave $10 how much could we conceivably raise (specifically for Prof Lipkin's study)?

    edit: I've posted a poll. I hope people respond. http://forums.phoenixrising.me/inde...h-raising-funds-for-prof-lipkins-study.25213/
     
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  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im up for it if its going to give us some answers
     
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  18. August59

    August59 Daughters High School Graduation

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    I was going to donate $50, but that leaves no money for no one else. I think in this one instance in time it is worth it
     
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  19. beaker

    beaker CFS/ME 1986

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    But what fund ?
    It would be easier to raise money if we had a tax exempt organization ( like us -- Phoenix Rising ) that had had a research fund or some mechanism for donations to be earmarked for specific things. This time Lipkin. But perhaps in the future something else will come up and funds need to be raised fast and It's so much easier to ask friends and family to donate if it's for a tax exempt charity ( gives it more credibility and a benefit for them )
    Is such a mechanism already set up w/i PR ? If not, can it be ? Should it be ?
     
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  20. WillowJ

    WillowJ Senior Member

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    yes, that's a good point.
     

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