Another DHHS contract is in the works — again with the IOM

 This notice was sent out today:

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold its fall meeting as a webinar on November 12 and 13, 2013, from 12:00 noon – 5:00 pm ET each day.  This will not be an in-person meeting.  Because of budget constraints and the government-wide Sequestration, federal advisory committees have been told to conduct at least some of their meetings as webinars or use other similar formats. 

We will use webinar technology to accept questions to the committee submitted in real time, similar to the questions received on note cards from the last meeting.   For the first time, we will accept prerecorded videos as public comment for the fall 2013 meeting. As in the past, we will have “live” public comment via phone and will accept written public comments.  Detailed instructions for joining the webinar and providing public comment will be posted on the CFSAC website www.hhs.gov/advcomcfs/ at a later date.  Agenda items will be posted on the CFSAC website by October 28. 

The 2014 CFSAC spring meeting will be in-person in Washington, DC; exact dates will be announced in 2014.

We continue to work on a contract with the Institute of Medicine (IOM) to develop recommendations for clinical diagnostic criteria.  When the contract is finalized, we will provide additional information via the CFSAC listserv and website.  This topic will be included as an agenda item for the November webinar.

If you have any questions, please email cfsac@hhs.gov.

Thank you,

The CFSAC Support Team”

Of extreme concern are these sentences:

We continue to work on a contract with the Institute of Medicine (IOM) to develop recommendations for clinical diagnostic criteria.  When the contract is finalized, we will provide additional information via the CFSAC listserv and website.”

They provide no information about the scope of work of the proposed contract, dates, who will engaged, who (patients/experts) this has been discussed with……..

And they say that we will be given more information when the contract is finalized.

We should have been provided the information before now!

DHHS ought to have partnered with us and ME experts about this all along.

Instead advocates and ME experts are being bypassed as DHHS pursues its “own thing”.

 

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