The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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NIH phonecall and Q&A, Tues 8 March

Discussion in 'General ME/CFS News' started by Simon, Mar 8, 2016.

  1. Simon

    Simon

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    I've just come off the phone briefing (which was 20 minutes from the NIH, 40 mins Q&A, IIRC) as I was lucky enough to get one of the slots.

    The call was chaired by NIH Director Francis Collins, which I think shows serious committment from the NIH

    Overall, I was pretty impressed but unsurprisingly not everything is ideal, in my view. I'm sure other will be adding their views, but I need to rest. Generally, I thought the NIH sounded serious about listening to patients. I'm encouraged.

    I will write up some notes when I have the energy. I'm told the NIH will be releasing a recording to today's call 'soon', but waiting to here when that will be.
     
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  2. msf

    msf Senior Member

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    Did you ask Francis if he was ashamed of himself for employing someone like Walitt?

    Joke!
     
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  3. Riley

    Riley Senior Member

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    Thanks for the report. I'm dying to know how it went!
     
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  4. Esther12

    Esther12 Senior Member

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    Thanks for listening in for us Simon.
     
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  5. Simon

    Simon

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    I know this must be so frustrating for those not there (I think there must be a techno way to have a larger group, and still give people the chance to ask questions), but just from the questions asked it was clear many of the most familiar names were there, inc Robert Miller, Jennie Spotilla, Dr Lily Chu, Donna Pearson, Deborah Waroff and Cort Johnson. I expect they will be sharing their views soon.

    I wish I could share my notes instantaneously, but I'm exhausted and they are illegible...

    More anon
     
    Last edited: Mar 8, 2016
  6. shannah

    shannah Senior Member

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  7. shannah

    shannah Senior Member

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  8. searcher

    searcher

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    UPDATE: A full transcript of NIH's call is now available at http://www.meaction.net/2016/03/09/nih-telebriefing-update/

    -------

    I wasn't able to join the call but a participant who wants to stay anonymous took extensive, but rough, notes (basically a transcription) which are uploaded at http://www.meaction.net/wp-content/uploads/2015/04/NIH-community-call-3-8-16.pdf

    Edit: Denise confirmed down-thread that the MEadvocacy rep was Joni Comstock and that Charmian asked about the size of the study.

    Edit2: We don't have a recording yet so please note that these are not exact quotes-- some of this is shorthand, and it's guaranteed that there will be some inaccuracies as the notes were all written in real-time.
     
    Last edited: Mar 9, 2016
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  9. Simon

    Simon

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    Some very rough notes, bear in mind then and now I'm pretty tired so accuracy may not be great.

    I missed the first few minutes as my line kept dropping, and came in during Francis Collins's introduction. He ended up urging researchers and patients to 'work together, not apart'. But his presence there, for a one hour call, was pretty impressive. I'm not sure how much he said, because at times I wasn't sure when he was talking and when it was Walter Koroshetz [NNIDS head honcho] (never heard either speak before, woozy brain) but he certainly chipped in a few times..

    Koroshetz stressed this study was just the start. Said it was a long-term challenge, and a hard problem (else woudl have been solved by now).

    OK, just seen notes have been posted above, so I'll leave you to that and take a break.
     
  10. jimells

    jimells Senior Member

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    The phone conference system used for the last CFSAC meeting allows some participants to speak/listen while other participants are in listen-only mode. But I wouldn't expect NIH people to be familiar with their own systems. Or to know about the CFSAC list serv :bang-head:
     
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  11. Denise

    Denise Senior Member

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    I am not sure Collins was there for the entire call because when Jennie Spotila addressed a question to him
    I thought I understood the MEAdvocacy rep to be Joni Comstock.

    The person who asked about study size was Charmian Proskauer of Mass CFIDS.

    fwiw - I too got the impression that Collins was not there for the entire talk.
     
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  12. searcher

    searcher

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    Thanks so much Denise, I have made those edits. I will be offline the rest of the day but someone will additional edits tonight if anyone sees anything glaring.
     
    Last edited: Mar 8, 2016
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  13. Simon

    Simon

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    Koroshetz:
    In a few places Walter Koroshetz stressed the scale of what's needed to crack this illness. I thought he gave an interersting answer to Rivka Solomon who asked how th NIH would ramp up the funding needed.

    He said that for the last 50 years the NIH has dished out funds according to the 'tried and true' method of competitive peer review - anyone can submit on any disease and the best research proposals get funded.

    But he acknowledged that as things stand that won't get mecfs funding up to anything like an appropriate level. He said what's needed in ME/CFS are NIH funds to fertilize the research and get it going.

    "To get a large number of highly motivated and well-trained investigators into the field. That’s what we’re planning to do in a fairly short time. To get it on par, we need those apps to come in and compete in a fair way with the other disorders. There’s a short-term process that we need to stimulate with funds for ME/CFS, but our hope is that this will spread, that the community will start working with investigators at univs and clinics across the country."

    Elsewhere he (or someone else) talked about th need to develop infrastructure, and I think by that they might in part mean builidng up consortia of collaborating researchers.

    [btw, the lateset NIH strategy document officially recognises the need to give some weight to disease burden when deciding what to fund].

    Edit: my take from that is that the NIH are planning to invest hard cash, and resources, in the short-term,
    - to get enough red hot researchers into the field in the medium to long-term,
    - so that there will then be enough high-quality applications for NIH funds for mecfs studies to generate a 'large' mecfs programme, without needing further specific action from the NIH
    - (apart from funding high quality proposals, as it would in any other field)

    Finally, from K:
    "We have to utilize the NIH resources as best we can for the long term. We can’t do it alone, we need to do it with the patients and advocacy groups, working hand-in-hand."
     
    Last edited: Mar 8, 2016
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  14. TiredSam

    TiredSam The wise nematode hibernates

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    Please go and lie down. I'm feeling guilty just reading your posts. We can wait, really :)
     
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  15. shannah

    shannah Senior Member

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    The protocol as posted states

    "Tests of body functions such as ... blood pressure while standing upright, sitting and lying, and heart rate."

    Why wouldn't they just do tilt table testing. It seems to me that Dr. Bell advocates actual tilt table tests to determine the OI problems. It seems to me TTT gives a more controlled result - something about the shifting from leg to leg that ME patients do to minimize symptoms while standing that skews results or something to that effect.

    http://mecfs.ctss.nih.gov/index.html
     
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  16. A.B.

    A.B. Senior Member

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    Wow they really sound serious.

    Even Walitt is trying to earn our trust.
     
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  17. BurnA

    BurnA Senior Member

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    I would interpret "blood pressure while standing upright sitting and lying, and heart rate" to be part of a TTT.
     
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  18. shannah

    shannah Senior Member

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    I think it's worth clarifying with them. Same with the exercise testing.
     
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  19. BurnA

    BurnA Senior Member

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    Big thanks to all who took notes!

    It sounds positive. My only gripe is that the excuse for not having more than 40 ME/CFS patients is due to time

    But what about the time they would have spent testing the FMD group ? That time would have already been accounted for, so adding 20 more ME/CFS patients wouldn't increase the study time beyond its original timeframe. ?

    All in all its sounds like they are serious which is probably the most important thing
     
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  20. duncan

    duncan Senior Member

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    Nath and Koroshetz seem to claim at one point there will be no room for bias. "The other thing, there is no element of subject bias..." and "The people here have the strictest scientific lines...I rarely if ever have seen what you might call a personal bias affect a study."

    I think there are some that might suggest they need look no further than some of the Lyme research performed at the NIH to reach a different conclusion.

    There are plenty of tests that are proposed in this study as it stands that could allow for interpretation, and therefore could potentially introduce the specter of bias.
     
    Last edited: Mar 8, 2016
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