Archive for June, 2014

We must be heard

Advocates have the opportunity to submit public comment for the Chronic Fatigue Syndrome Advisory Committee (CFSAC) meetings. However, if the committee members do not have access to public comment, they cannot use it to inform the advice and recommendations provided to the Secretary of Health and Human Services which is the purpose of the committee.

For the June 2014 CFSAC meeting, public comment was not provided to committee members so Denise Lopez-Majano sent the following letter to Dr. Nancy Lee, Designated Federal Official (DFO) of the Chronic Fatigue Syndrome Advisory Committee (CFSAC):

Dear Dr. Lee,

I am writing to request that written comment always be provided to CFSAC members (including ex-officios, non-voting liaisons) along with all meeting materials.

It has come to my attention that written public comment was not included in the June 2014 CFSAC committee member’s binders. During the meeting it was indicated that submitted written comment was only available at the back of the meeting room. This means that the unless public comment was also provided orally, it was not accessible to committee members, nor could it be readily referred to by them at other times.

In order for CFSAC to correctly address (among other things) concerns about quality of life, and development and implementation of programs to inform healthcare professionals (as detailed in the CFSAC charter), CFSAC members must be knowledgeable about and aware of the realities patients, caregivers and others regularly face. Public comment often illustrates points that committee members/agencies and others may not be aware of. Therefore it is vital that CFSAC members have ready access to it because public comment helps CFSAC correctly advise and make recommendations to the Secretary about these and other issues.

In addition, some advocates/patients can only provide written public comment. As a result, if their public comment is not provided to committee members, not only is their voice not heard at all, but there is no opportunity for their input to inform CFSAC about matters that can result in CFSAC advice and recommendations to the Secretary.

Just as presentations made to the CFSAC help inform the committee’s advice and recommendations, so too does the public comment provided by stakeholders, who after all, are among those most knowledgeable about life with this horrid illness.

I urge you to ensure that submitted written comment is provided along with all other materials for each meeting.”

If you would like to send a similar email to Dr. Lee, her email address is: nancy dot lee at hhs dot gov

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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 http://www.occupycfs.com/2014/06/02/tell-dr-collins-to-stop-p2p/

Additional information about P2P:

http://www.occupycfs.com/?s=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).

Details http://www.occupycfs.com/2014/06/08/twitter-chat/

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 http://www.hhs.gov/live . (Registration to attend in person ends June 12th. Details https://www.federalregister.gov/articles/2014/05/29/2014-12371/meeting-of-the-chronic-fatigue-syndrome-advisory-committee )