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IOM Panel Nominations Due Friday, October 11?

justinreilly

Senior Member
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NYC (& RI)
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/
PANDORA AND CAA ARE RECRUITING PEOPLE TO SERVE ON THE IOM COMMITTEE. Someone has just pointed out to me that while M.E. patients are busy signing the petition to HHS to Stop the IOM and Accept the CCC, some “advocates” are already suggesting who should be on the IOM committee. My informant asks not to be named, but (s)he has seen the form and the names have to be in by October 11. Patients need to be aware of what our so-called “advocacy” organizations are doing. They are double-crossing patients behind our backs! We must move very quickly if we want to fight this!
 

justinreilly

Senior Member
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NYC (& RI)
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.

The following are my nominations for panelists to serve on the Institute of Medicine's panel on a new clinical case definition for MEcfs (myalgic Encephalomyelitis/ chronic fatigue syndrome). Can the committee or department that is picking the panelists please reply to this email saying you received it?

Nominations:
All 35 MEcfs experts who signed the letter to HHS demanding that there be no IOM contract and that the CCC be immediately adopted.
and
Lily Chu, MD
Joan Grobstein, MD
Jennie Spotila, JD
Hillary Johnson
Dr. Kogelnik, MD
Anthony Komoroff, MD

But NOT:
Suzanne Vernon, PhD or anyone else from CFIDS Association of America
Anyone from the federal government especially CDC
Anyone from UK or Europe

Thank you for your consideration.

Sincerely,
/s/
Justin Reilly, esq.
New York, NY
[\quote]
 

WillowJ

คภภเє ɠรค๓թєl
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4,940
Location
WA, USA
How can they say we can nominate and then not send out proper notifications of nomination process? That is beyond irresponsible. That is lying.
 

Andrew

Senior Member
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2,513
Location
Los Angeles, USA
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.
 

Andrew

Senior Member
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Los Angeles, USA
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.
 

Firestormm

Senior Member
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5,055
Location
Cornwall England
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 :)
 

Hope123

Senior Member
Messages
1,266
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.


 

Andrew

Senior Member
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Location
Los Angeles, USA
He
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

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.
 

Chris

Senior Member
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Location
Victoria, BC
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
 

justinreilly

Senior Member
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2,498
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NYC (& RI)
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.
 

Chris

Senior Member
Messages
845
Location
Victoria, BC
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
 

SOC

Senior Member
Messages
7,849
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?