IOM Meeting Monday May 5th

The 3^rd meeting for the IOM Diagnostic Criteria for ME/CFS project is Monday May 5^th.

Location: National Academies of Science Building 2101 Constitution Ave NW, Washington, DC 20418 (This is a different location than the January meeting.)

Time: 1pm- 5:30pm (the agenda lists the meeting as lasting until 5:30 though the FAQs lists it as ending earlier).

Webcast link: http://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome/2014-MAY-05.aspx

Agenda link: http://www.iom.edu/~/media/Files/Activity%20Files/Disease/MECFS/Open%20Session%20Agenda_04%2017%2014.pdf

Additional FAQs: http://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome/2014-MAY-05.aspx

Remember – at any time during the project you can submit comments to the committee. Send comments to: mecfs@nas.edu

It might be worth referencing IOM MECFS Study in the subject line. All comments become part of the Public Access File.

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 27^th and Tuesday the 28^th of January 2014.

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

 

The afternoon session of January 27^th 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.

 

http://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome.aspx

http://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome/2014-JAN-27.aspx

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”.