With only 4 days in between them, December offers two very important meetings to the ME/CFS community. On December 3-4, the CFS Advisory committee (CFSAC) will hold its third and final meeting of 2014. Then on December 9-10, after nearly 10 months of discussion, debate and anxiety among the ME/CFS community, the Pathway to Prevention Workshop for Advancing Treatment in ME/CFS will occur. Both in DC and both available via webcast.
Details on both of the meetings, including links to registration information is offered below.
With already overburdened December schedules taxing any ME/CFS patient’s energy envelope and health, the unfortunate scheduling of these two meetings so close together will lead many patients to have to choose one over the other. While the choice is completely an individual one, SMCI would like to encourage stakeholders that are able, whether live or via webcast, to participate in the P2P Workshop.
Despite many flaws in the process and concerns about potential outcome from many, the P2P process could be what is needed to break through the negative cycle of ME/CFS research to move us to a day when ME/CFS is appropriately funded. With significant stakeholder participation, the P2P has increased potential to further the recognition of the clinically devastating nature of ME/CFS and recognition of the disease as an urgent area of future study.
Your voice matters and your involvement in the process is important. Please consider registering for and participating in one or both meetings.
P2P Information & Links to Register
Registration is open for the Pathways to Prevention workshop for Advancing the Research on ME/CFS. Interested individuals may register to attend live or participate via webcast. It is our hope that many stakeholders will participate in this process in order to ensure the patients have a strong presence and a voice.
Our understanding is that stakeholders/patients will have the opportunity to participate in the discussion both in person and online by asking questions or making comments whether attending live or online. There is a total of 3.5 hours of “Discussion” time noted on the agenda, where public input will be addressed.
To register to attend live click HERE
To register for the webcast click HERE
If you plan on participating either live or via webcast, and want to learn more, our earlier posts on the subject should help inform your participation:
CFSAC Information & Links to Register
The agenda for the December 3rd and 4th meeting of the Chronic Fatigue Syndrome Advisory Committee was published this week.While the date has been publicized for some time, the meeting details were just shared on Tuesday, November 18th. You can read the full agenda HERE.
In addition to the standard agency updates, the agenda includes:
- A request for testimony on the topics of Centers of Excellence and patient registries
- Dr Sue Levine will offer comments on the P2P report on opioid use in chronic pain and speak briefly on the “IOM Report Rollout”
- Bob Miller will speak briefly about the ME/CFS P2P meeting
- There will be two hours of committee discussion.
If you want to offer public comment by telephone, you must register by Monday, November 24th at 5pm. If you want to submit written comments to the Committee, those comments are also due November 24th at 5pm. Registration and instructions for scheduling public comments and submitting public testimony are available at www.blsmeetings.net/cfsac.
If you would like to receive notification of CFSAC activity directly via email, you can sign up for the CFSAC listserv at http://www.hhs.gov/advcomcfs/cfsac_email_list.html