• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Registration Now Open for Public Session (Jan. 27th 2014) of ME/CFS IOM Meeting

Wally

Senior Member
Messages
1,167


Update - I have signed up to attend in person and I have requested a slot for public testimony.
tongue.gif


Earlier today I sent out a letter, which included a formal complaint on how this process has been handled. I also included a written request to be allowed to attend the public session of this meeting, notwithstanding my objection to the underlying HHS/IOM ME/CFS contract. (cc's of my letter are flying all over D.C. right now)
wink.gif


Just received my confirmation that I have been granted admittance to the public session of this meeting. However, no confirmation was included on whether or not I will be granted time to give public testimony.
rolleyes.gif


Video:

Wally
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
First come first served Wally. Be there early I would suggest. Only 15 3 minute slots are being allowed. Good luck x

A tentative agenda and a link to register for the open session of the first meeting of the Institute of Medicine study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome are now available at the meeting webpage. Members of the public may participate in person or via webcast. Persons who plan on attending the meeting in person are requested to register in advance prior to January 22, 2013. Registration for persons attending the meeting in person will be open until seating capacity of the conference room is reached. All participants may participate via webcast. The webcast will be available on the meeting webpage on January 27, 2014.

The draft agenda includes approximately 45 minutes for public comment. The committee anticipates that there will be fifteen slots available for in-person attendees to provide comments. In order to allow adequate time for each commentator, public comments should each be limited to three (3) minutes.

It would be most useful if comments are focused on the following question: "What is the most important aspect or information that this committee should consider throughout the course of the study?"

Attendees may sign up for one of these slots when you register to attend the meeting in-person. The slots will be allocated on a first-come first-served basis.

Webcast participants may also submit comments via the email (mecfsopensession@nas.edu). All written comments for committee consideration will be included in the Public Access File created for the study and should not include any personal medical information.

>">Register for the Meeting >>
>">See the Tentative Agenda >>
 
Last edited:

jspotila

Senior Member
Messages
1,099
First come first served Wally. Be there early I would suggest. Only 15 3 minute slots are being allowed. Good luck x

I was under the impression that the slots will go first-come first-served in registration online, not attendance at the meeting . . . . am I wrong?
 

Wally

Senior Member
Messages
1,167
First come first served Wally. Be there early I would suggest. Only 15 3 minute slots are being allowed. Good luck x

I typed as fast as my fingers would allow me, so time will only tell if I was fast enough to snag one of the 15 other slots. I am curious as to how the IOM decided to give out the other golden tickets to those individuals listed on their tenative agenda?

I will reiterate again over on the thread started yesterday by Phoenix Rising's Acting CEO, (Mark Berry @Mark) that I do believe anyone speaking as an advocate for a group of individuals should be prepared to identify exactly who they are speaking/advocating on behalf of.

See, http://forums.phoenixrising.me/inde...ll-the-iom-committee.27457/page-3#post-419043 - post no. 27 (as well as post nos. 12, 14, 15 and 25)

As of right now, no one identified on the "tenative" agenda for this meeting has been given a proxy to speak on my behalf. :cautious:

Wally
 

Wally

Senior Member
Messages
1,167
I was under the impression that the slots will go first-come first-served in registration online, not attendance at the meeting . . . . am I wrong?

Jenny,

Your impression is the same as mine. Perhaps lawyers tend to see things on a more literal basis. ;)

@Firestormm, I believe you are incorrect in stating that I should arrive early at the meeting in order try to obtain a slot to give public testimony. :confused:

Wally
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Why? You can read the email as well as me. I have highlighted the relevant bits in bold. You register to speak at the door when you arrive. If there is a slot still available then you get to speak for 3 minutes. Those on the agenda have already been granted slots for 5-7 minutes talk time. Seems straightforward - but I am not a lawyer thank the gods ;)
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Attendees may sign up for one of these slots when you register to attend the meeting in-person. The slots will be allocated on a first-come first-served basis.
My interpretation is that it's first-come-first-served in terms of how quickly you register online.

@Firestormm, it doesn't say anything about having to register when you arrive at the door. Could you have misinterpreted it?

I've added a word in bold, below, which might illustrate why we're interpreting it differently:
Attendees may sign up for one of these slots when you register online to attend the meeting in-person. The slots will be allocated on a first-come first-served basis.
 

Denise

Senior Member
Messages
1,095
Why? You can read the email as well as me. I have highlighted the relevant bits in bold. You register to speak at the door when you arrive. If there is a slot still available then you get to speak for 3 minutes. Those on the agenda have already been granted slots for 5-7 minutes talk time. Seems straightforward - but I am not a lawyer thank the gods ;)

The registration form asks people to indicate if they are interested in a public comment slot.

Also - the IOM project page has some FAQs on it http://www.iom.edu/Activities/Disea...elitisChronicFatigueSyndrome/2014-JAN-27.aspx
 

Ember

Senior Member
Messages
2,115

jspotila

Senior Member
Messages
1,099
Why? You can read the email as well as me. I have highlighted the relevant bits in bold. You register to speak at the door when you arrive. If there is a slot still available then you get to speak for 3 minutes. Those on the agenda have already been granted slots for 5-7 minutes talk time. Seems straightforward - but I am not a lawyer thank the gods ;)

I parse it differently:

Attendees may sign up for one of these slots when you register to attend the meeting in-person. The slots will be allocated on a first-come first-served basis.

You sign up when you register to attend the meeting in-person. In-person attendance is required in order to speak, so you sign up for a slot when you are registering to attend in person. The second sentence (allocating on first come first served) modifies the first sentence.
 

Seven7

Seven
Messages
3,444
Location
USA
To all,


Just remember this is part of our history. I know we all oppose but if you take all the time you have to only oppose, then we might not saying other things that if the contract goes ahead will not be said. This is the opportunity to let them know the symptoms, the test results, the evidence so they cannot bury us! Fight with facts!

Just a thought.
 

Seven7

Seven
Messages
3,444
Location
USA
I also want to say: I am focusing saying everywhere that I have inability to produce energy on demand instead of "fatigue" (which I have also) because I think we need to distinguish the ME from the general fatigue bunch. We have a very unique situation and we need to highlight it.