Posts Tagged 'registration'

Bits and pieces

Many thanks to all those who have written to Tell Dr. Collins to Stop P2P

If you have not already done so, fax or email Dr. Francis Collins today and request that he cancel the P2P Workshop.

Details here

Additional information about P2P:

A parallel action to contact Congressional officials about P2P will be released shortly.

WEGO Health Twitter chat about advocating for oneself while living with a stigmatized chronic disease. Hosted by Jennie Spotila

Date: Tuesday, June 10th

Time 3-4pm (Eastern time).


The next meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC)

Monday afternoon (12-5pm Eastern time) June 16th and Tuesday June17th (9am-5pm Eastern time).

The meeting will be live-video streamed at . (Registration to attend in person ends June 12th. Details )


Registration for IOM open session (Jan 27th 1-5:30pm) is now open

IOM provided the following answers to some questions (some questions still unanswered)

Meeting room capacity – after taking committee member’s table into account – 60 (sixty) people

Registration for attending the meeting will automatically close when 60 people have registered.

Webcast viewing – unlimited number of viewers, anyone with an internet connection (any country) should be able to watch.

Valid photo ID needed for security sign in at building entrance

Arrive 20-30 minutes ahead of session to avoid lines at security

Meeting room is on the main floor, close to building entrance

Sign in again at registration table (meeting room entrance)

No security escort required within building

Security guards are available to direct people to wherever they need to go

A room directly across from meeting room is available to people before the open meeting session and for rest during the meeting.

Restrooms are on the main floor (down the elevator hall — not sure where that is in relation to the meeting room)

Food and drink are available on the third floor of the IOM building (Keck). Cafeteria is open from 7:00am to 2:30 pm. Vending machines for food/drink are also on the third floor (near the elevators).

People may eat and drink in the meeting room.

Tentative agenda for open session

With hopes that 2014 will be a year of improved understanding of ME and more appropriate action based on that understanding

In 2014, we hope

your sense of purpose is renewed,

your support network grows larger,

you know that your views are valued,

you learn from others, and they from you,

your days are enhanced with moments of joy,

as you reach out in kindness to others, they reciprocate in turn,

practice makes it easier to say no/not now thank you so as not to exceed your limits.


– – – – – – –

The IOM Committee on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome will have its first meeting Monday the 27th and Tuesday the 28th of January 2014.

The morning session on the 27th of January and the session on January 28th are closed to the public.


The afternoon session of January 27th is open to the public. (Location: Keck Center
500 Fifth St. NW, Washington, DC 20001


Information about agenda, registration and (for those who cannot attend in person) viewing via Webcast will hopefully be available soon.

Info on Accessing the CFSAC webinar Dec 10 and 11 2013

There has been a great deal of confusion about the CFSAC webinar meeting and how to access it.

(Contrary to what was previously said by HHS) Registration IS NOT required for viewing it.

HHS’ most recent information on viewing the webinar is:

Webinar Information

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) Webinar will be a “virtual meeting” using Adobe Connect Pro, a web conferencing product that allows users to conduct live meetings and presentations over the internet. In order to view and listen to the proceedings during the CFSAC webinar participants will need to access the webinar using the information below:

Webinar Access:
Adobe Connect URL:

Access to the Audio Portion of the Webinar:
Conference Call Number: 877-918-6627 | Passcode: 4429527

Using Adobe Connect requires that you have an Internet connection, a Web browser, the latest version of the Adobe Connect Add-in to attend a Web conference. Adobe Connect Pro is supported by many operating systems, including Windows, Macintosh, Linux, and Solaris as well as the most widely used browsers, including Internet Explorer, Firefox, and Safari.

It is recommended that you test your computer prior to attending a meeting. You can do this by going to

This diagnostic test will ensure your computer and network connections are properly configured to provide you with the best possible Adobe Connect meeting experience. The diagnostic test checks for the following:

  1. Clear connection to Adobe Connect

  2. Bandwidth availability

  3. Latest Adobe Connect Add-in

If the diagnostic check finds that you do not have the latest Adobe Connect Add-in installed on your computer (as seen below) please click on the “Install Add-in” link on your computer as circled in the picture below. Please note that you will not be able to view the webinar if the latest Adobe Connect Add-in is not installed.

Adobe Connect

Once the Add-in is installed, click on the link to join the webinar. You should see the screen below.

Adobe Connect Login

Click the button to “Enter as a Guest” and type your name (if you choose to be identified) and click the “Enter Room” button. You will be directed to the CFSAC webinar.

If you have technical difficulty during the webinar, please contact Seamon Corporation at 301-658-3442 or

The webinar will be archived on the HHS CFSAC Web site at

Additional “How to use” resources for Adobe Connect

If you have never used Adobe Connect, please click on the following link to get a quick overview:

The Visual Quick Start Guide provides basic information for participating in an Adobe Connect Webinar. Please click the following link to view the Visual Quick Start Guide:

Register for CFSAC and for public comment

CFSAC December webinar meeting (Dec 10 and 11, 2013) registration and public comment request link is:

At the moment there is a glitch on the registration form that won’t allow you to complete the registration until you attach your public comment.
One advocate got around this by creating a document placeholder  and attaching that. Something like this ought to suffice:

“Public comment to be submitted”.

Hopefully that will be OK but let’s hope the page will soon be fixed also.

Remember that public comment via video IS an option!

CFSAC public comment due May 15th! Speak Up!

Our community usually has common priorities that it would be good for the CFSAC to hear (from as many people as possible).

An obvious one for the May 2013 meeting is thanking the FDA for the recent Drug Development for ME and CFS Public Workshop. FDA modeled engagement and collaboration with us in ways that all of DHHS could emulate.

The agenda (included below) is only an overview of the May 2013 CFSAC agenda.

We do know that the CFSAC will generate a list of high priority recommendations and it would be very helpful for your public comment to include YOUR top 3-5 priorities for the list. Some frequently mentioned priorities (and the recommendations) are as follows:

Holding a stakeholders’ workshop to reach a consensus on case definition. CFSAC recommends that you will promptly convene (by 12/31/12 or as soon as possible thereafter) at least one stakeholders’ (ME/CFS experts, patients, advocates) workshop in consultation with CFSAC members to reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS beginning with the 2003 Canadian Consensus Definition for discussion purposes. (10/12)

Three regarding NIH and funding:

NIH should fund ME/CFS research commensurate with the magnitude of the problem, and issue an RFA specifically for ME/CFS. ME/CFS is an illness with enormous economic and human costs. The April 2011 NIH State of Knowledge Workshop identified a number of gaps in what is known about the illness. To address these gaps warrants an interagency effort comprising, but not limited to, NIH,CDC, and AHRQ. Further, the focus should be on interdisciplinary discovery and translational research involving interacting networks of clinical and basic science researchers. Areas to be examined would include the following: identification of patient subsets for detailed phenotyping and targeted therapeutic interventions, biomarker discovery, systems biology approaches and disability assessment. To facilitate the above goal, CFSAC recommends that ME/CFS research receive funding commensurate with the magnitude of the problem and that the NIH (and/or other appropriate agencies) issue an RFA specifically for ME/CFS. (5/11)

Pool resources to create Centers of Excellence, using physical or virtual locations. CFSAC would like to encourage and support the creation of the DHHS Interagency Working Group on Chronic Fatigue Syndrome and ask this group to work together to pool resources that would put into place the “Centers of Excellence” concept that has been recommended repeatedly by this advisory committee. Specifically, CFSAC encourages utilizing HHS agency programs and demonstration projects, available through the various agencies, to develop and coordinate an effort supporting innovative platforms that facilitate evaluation and treatment, research, and public and provider education. These could take the form of appropriately staffed physical locations, or be virtual networks comprising groups of qualified individuals who interact through a variety of electronic media. Outreach and availability to underserved populations, including people who do not have access to expert care, should be a priority in this effort. (11/11)

NIH should issue a $7-10 million RFA for outcomes measures, and biomarker discovery and validation. CFSAC recommends that you instruct the NIH to issue an RFA (funded at the $7-10 million range) for projects to establish outcomes measures for ME/CFS diagnosis, prognosis and treatment which would include but not be limited to biomarker discovery and validation in patients with ME/CFS. (10/12)


Removal of the CDC Toolkit. CFSAC asks that the Centers for Disease Control and Prevention (CDC) remove the CFS Toolkit (both English and Spanish versions) from the CDC website. (6/12)


Additional background on the CFSAC recommendations can be found here –

If you want to give public comment, you must register ( )

and send public comment to by May 15 if you want it to be on the public record.


CFSAC Spring 2013 Meeting

May 22 – 23, 2013

AGENDA OVERVIEW (note – this is not the full detailed agenda, just an overview)

May 22, 2013

9:00 am – 5:00 pm

·        Call to order CFSAC Chair

·        Welcome – Principal Deputy Assistant Secretary for Health

·        Remarks from the CFSAC Chair

·        Agency Updates – CDC, CMS, HRSA, SSA

·        Public Comment

·        Presentation – Process for CMS determination of coverage for tests and treatments

·        Committee Discussion


May 23, 2013

9:00 am – 5:00 pm

·        Call to order CFSAC Chair

·        Agency Updates – AHRQ, NIH, FDA

·        Presentation – Information about the Affordable Care Act and the Health Insurance Marketplace

·        Public Comment

·        Presentation – How to get more clinicians involved in diagnosing and treating patients with ME/CFS

·        Committee Discussion


Register for CFSAC May 2013 attendance and for public comment

The Spring 2013 CFSAC meeting will be held May 22–23, 2013

Registration is open:

To register for public comment:


The Federal Register notice for the May 2013 CFSAC meeting:

The meeting will be held at the Department of Health and Human Services; Hubert H. Humphrey Building; 200 Independence Avenue SW., Room 800; Washington, DC 2020