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IOM Panel Nominations Due Friday, October 11?

Discussion in 'Institute of Medicine (IOM) Government Contract' started by justinreilly, Oct 10, 2013.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    EDIT: Andrew has found out that the deadline for nominations has been extended to this Friday, October 18. You can email nominations to Kate Meck at kmeck@nas.edu.
    END EDIT

    According to Patricia Carter (posting on thoughtsaboutme.com and PANDORA's Facebook), nominations for the IoM panel for MEcfs are due tomorrow, Friday October 11. I have searched the Internet, but have not found any other mention. (All I did find were some sections from other IoM reports from 2009 characterizing ME as a psychiatric and somatoform disorder).

    The only email I have for IoM is iomwww@nas.edu.

    Does anyone else know anything about this? Does anyone have the email address we are supposed to respond to?

    From Patricia Carter:
    http://thoughtsaboutme.com/2013/10/...isagreeing-with-experts-and-patient-majority/
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Here is my email to IoM. Some will disagree, but I am going to participate as long as this process goes on as well as strongly opposing it. I was too exhausted to find the letter from the 35 experts to copy the names.

    Kati, Bob, beaker and 1 other person like this.
  3. WillowJ

    WillowJ Senior Member

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    How can they say we can nominate and then not send out proper notifications of nomination process? That is beyond irresponsible. That is lying.
    justinreilly likes this.
  4. WillowJ

    WillowJ Senior Member

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    add Emory University and University of WA to the blacklist.

    There are actually some people from UK/Europe we might like.
    Valentijn, justinreilly and beaker like this.
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I have heard back from IoM that the contact person is Kate Meck at mecfs@iom.edu. I have asked her about the nomination deadline and announcement, if any.

    EDIT: This email doesn't work. Use kmeck@nas.edu instead.
    beaker and WillowJ like this.
  6. Hip

    Hip Senior Member

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    We cannot let this go through.
    Last edited: Nov 6, 2013
    Valentijn likes this.
  7. Andrew

    Andrew Senior Member

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    He endowed the position, which I'm sure gives him influence at the IOM. I don't know how much. But this might explain why the IOM suggested SSRIs for GWS even though there is no science on the topic.
    Valentijn likes this.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Good points
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  9. Andrew

    Andrew Senior Member

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    I managed to reach someone. The reality now is they are accepting nominations until the end of this week. That would mean that October 18 is the deadline.
    Valentijn likes this.
  10. Chris

    Chris Senior Member

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    Thanks to Justinreilly and Andrew for info about nominations--I take it they can be sent to Kate Meck at mecfs@iom.edu ? Hope they are open to nominations from Canada? Chris
  11. Firestormm

    Firestormm Senior Member

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    Nominating and 'recruiting' are two completely different terms. I think the statement from PANDORA clarified the opening comment in this thread at least in that regard.

    Can anyone nominate anyone they feel like then, Andrew? Is it open to the public? Thanks :)
    Kati likes this.
  12. Hope123

    Hope123 Senior Member

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    Thanks for the info, Justin and Andrew. My take is that IOM did not want the public nominating people and wanted to limit nominations to a couple orgs. How they selected those orgs is anyone's guess.

    Anyway, my suggestion is people write in with their nominations even if you have not been asked.
    Worst case.................they throw out your e-mail.
    Best case....................they pay attention.

    As far as who to nominate, the list of 35 experts is a good start. Add Ian Lipkin, Peter Rowe.
    One person to nominate that might stand a good chance of getting on the Board is Dr. Harvey Alter. Dr. Alter was involved mostly with helping figure out the XMRV situation but from that, he does have an understanding of the seriousness of this illness. Dr. Alter has the advantage of being a member of the National Academy of Sciences, whose members are given priority when it comes to selection for IOM projects. However, I don't know if he would serve and how busy he is.

    Quote:
    Viruses have a way of finding me, instead of my finding them. If this chronic fatigue link pans out, there are years of work in that. Unfortunately, I don’t have many years left. There is a lot about this that remains unanswered. I think chronic fatigue will prove to have a whole spectrum of causes. Some will be viral and some won’t be. I am convinced this is a real disease for some people. I get letters from these patients and they are so desperate. Their lives have been totally disrupted. If a treatment could come out of this research, it would be a great.
    [http://www.urmc.rochester.edu/news/...dicine/winter-2011/alumni-news/alter-q-a.cfm]

    I don't know if IOM accepts members from abroad although their website does mention foreigners as members.

    If from the UK, I suggest: Dr. Julia Newton, Dr. Derek Pheby, Dr. Luis Nacul, Dr. Gwen Kennedy (vascular issues in CFS), Dr. Dominic O'Donovan (pathologist who has done autopsies of CFS patients)

    http://phoenixrising.me/archives/17009
    http://www.actionforme.org.uk/get-informed/about-us/people/trustees/professor-derek-pheby
    http://www.lshtm.ac.uk/aboutus/people/nacul.luis
    http://phoenixrising.me/archives/2043

    Dr. Ekua Brenu, Dr. Sonia Marshall-Gradisnik in Australia also do great work. The former has the advantage of being younger, female, and a minority which IOM says they try to give preference to.


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  13. Andrew

    Andrew Senior Member

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    He
    1. I have sent two emails to mecfs@iom.edu and they both bounced. I hope everyone else is checking their inboxes for indications of bounced emails.

    2. But you can also send directly to Kate Meck: kmeck@nas.edu

    3. Anything you send in can/will become public once it hits the committee. I assume because the public has access to the committee.

    4. Nominations from patients will be considered.
  14. Chris

    Chris Senior Member

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    Thanks, Andrew; I have sent my nominees (all from the list of those who signed that letter, except for Julia Newton) with brief notes to kmeck@nas.edu, identifying myself as Canadian. Now we will have to wait again--if by some chance some of these are nominated, they will of course have to decide what to do. They are all highly intelligent and informed people, and probably know more about what is really going on than we do. But at least we will have given an indication of patient support. I think I will send another letter to Sebelius too. What an unholy mess these bureaucracies have managed to produce! Chris
    WillowJ likes this.
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Andrew,

    My email ended up bouncing back to me, but it took several days, which was really weird, that hasn't happened before to me. Thanks for getting the right email address! I have edited my posts above to reflect your info.
    WillowJ likes this.
  16. Chris

    Chris Senior Member

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    Thanks, guys! I sent my email list of nominees to Kate Meck, and this morning found a courteous note of reception, stating that my support would be added to names already on their list, and new names added. So at least it got through! Now we wait to see.... Chris
    WillowJ likes this.
  17. Andrew

    Andrew Senior Member

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    I haven't tested it yet, here's a new email address.

    WillowJ likes this.
  18. SOC

    SOC Moderator and Senior Member

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    It might help to have a list here in the thread of the 35 signatories to the letter opposing the IOM contract. It will be easier for PR members to nominate them to the IOM committee if the names are right here in front of us, brain fog being what it is. ;) Anybody have quick and easy access to that list?
    alex3619, justinreilly and lnester7 like this.
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Thanks, Andrew for the info that mecfs@nas.edu is apparently working now. Unfortunately, the time for me to edit my first post again has expired.

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