IOM Public Meeting with the ME/CFS Committee

IOM1-300x72On May 5, 2014, the IOM Committee held another public meeting concerning their work on diagnostic criteria for ME/CFS. Below you will see the details of the meeting as received from the listserv announcement.

In order to facilitate more response and make it easier for patients to offer their thoughts and insights, the Solve ME/CFS Initiative created a simple online questionnaire of the committees specific questions:

  1. In your opinion, what are the most important issues that healthcare providers should be educated about when it comes to diagnosis of ME/CFS?
  2. What are your thoughts on the current terminology used to describe this disease: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? If you could suggest new terminology, what would you suggest and why?

We compiled all of the answers into a report and submitted them in full, unedited, prior to the April 23rd deadline. When submitted we urged the committee to take the time to read all the responses. All told, 143 individual patients responded and offered their thoughts to your their query.

We noted that, “For many, just the effort required to provide their response comes at a great cost in terms of energy spend. They ‘spent’ their energy reserve on this because of the magnitude of its importance to them personally and to the overall ME/CFS community.”

Read the report HERE: IOM_Patient_Survey_4_22_14

 

You can sign up to receive email updates – like the one below – directly from the IOM HERE
(simply scroll down and fill out the online form)

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The third meeting of the Institute of Medicine committee on Diagnostic Criteria for ME/CFS will be held May 5-6, 2014 in Washington, D.C.

On the afternoon of May 5, the committee will hold an information-gathering session that will be open to the public. Interested individuals will be able to attend the open session in person at the National Academies of Science building or virtually via webcast.

This open session is one of the many processes that the committee will use to gather information and assemble evidence that it will examine and discuss in the course of making its findings, conclusions, and recommendations. The objectives for the committee during this open session are to learn more about the cognitive, sleep, and diagnostic issues related to ME/CFS; and to seek input from patients and caregivers regarding their interaction with health care professionals.

If you would like to provide written comments to the committee for this meeting, please focus your comments on responses to the following questions:

  1. In your opinion, what are the most important issues that healthcare providers should be educated about when it comes to diagnosis of ME/CFS?
  2. What are your thoughts on the current terminology used to describe this disease: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? If you could suggest new terminology, what would you suggest and why?

Please use the email mecfsopensession@nas.edu to submit your written comments.

  • Written comments received by April 23, 2014, will be distributed to the committee before the meeting on May 5.
  • After April 23, written comments should be sent to the project email address (mecfs@nas.edu).
  • All comments will be considered by the committee, but those received after the April 23 deadline may be distributed after the meeting is adjourned.

As with any information sent to inform the committee, all written comments will be placed in a Public Access File in compliance with Section 15 of the Federal Advisory Committee Act.

Registration information, including the agenda, has been posted on the IOM website, HERE  and is below:

From the IOM listserv 04/07/14-  Upcoming Meeting

A tentative agenda and a link to register for the open session of the third meeting of the Institute of Medicine study on Diagnostic Criteria for ME/CFS are now available at the meeting webpage. Members of the public may participate in person or via webcast. Persons who plan on attending the meeting in person are requested to register in advance prior to April 30, 2014. Registration for persons attending the meeting in person will be closed when seating capacity of the conference room is reached. All participants may participate via webcast. A link for the webcast will be available on the meeting webpage on May 5, 2014. 

Meeting Registration- HERE

Meeting Agenda- HERE

Institute of Medicine Study on Diagnostic Criteria for ME/CFS

OPEN SESSION AGENDA  |  May 5, 2014

1:00 – 1:15pm    Introduction to Public Session Ellen Wright Clayton, Committee Chair

1:15 – 1:45pm    Neurocognitive impairments in ME/CFS Megan Arroll, Director of Research for The Optimum Health Clinic, London, UK

1:45 – 1:55pm    Q and A from Committee

1:55 – 2:25pm    Sleep disturbances in ME/CFS Akifumi Kishi, Postdoctoral Fellow in the Division of Pulmonary, Critical Care and Sleep Medicine, Department of Medicine, NYU School of Medicine

2:25 – 2:35pm    Q and A from Committee

2:35 – 3:05pm    Diagnostic and Criterion Issues for ME/CFS Leonard A. Jason, Professor, DePaul University, Director of the Center for Community Research

3:05 – 3:15pm    Q and A from Committee

3:15 – 3:30pm    Break

3:30 – 5:00pm    Patient and Advocate Panel: Challenges of ME/CFS patients when interacting with the health care system

Invitations have been extended, final panelists TBD.

5:00 – 5:20pm    Q and A from Committee

5:20 pm     Adjournment of Public Session

 

Ellen Wright Clayton, Committee Chair

 

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