I thought this might be a nice Christmas present for the community...
I received this letter, and the project description below, from Dr Unger a week ago. Phoenix Rising is invited to nominate a representative to serve on a Technical Development Workgroup (TDW) with a brief to help identify needs and priority topics for ME/CFS information and educational materials. The aim of the project is "to assess and revise existing educational materials and create new materials to incorporate the recommendations of the 2015 Institute of Medicine (IOM) report".
Having watched CFSAC meetings for several years, I am just stunned to learn of this opportunity. It's further evidence of what increasingly looks like a genuine and significant change now taking place in US policy regarding ME/CFS. It's clearly an opportunity that the community must grasp with both hands.
The board have briefly discussed our options, and in the last few days I've had some brief conversations with a few US advocates about how we could approach this. The board is inviting input from our members about how best to take advantage of this opportunity, and of course the main task before us (with a deadline of January 4th) is to identify someone to act as Phoenix Rising's representative. We want our representative to be fully engaged with the forum community throughout the process, and our thinking is that our representative's brief will be to solicit and represent the views of our members, through forum discussions.
We do not believe the representative needs to be an MD or other medical professional, because the initiative is soliciting input from the patient community. We do think it would be far preferable if the representative were a US citizen, but I will ask Dr Unger whether that is an absolute requirement. I am not sure that a vote would be feasible, especially given the timeframe, but we will address the question of how to choose our representative as we progress.
Merry Christmas everyone! With the international momentum we're now seeing in ME/CFS advocacy, I think we can all look forward to an exciting year ahead!
I received this letter, and the project description below, from Dr Unger a week ago. Phoenix Rising is invited to nominate a representative to serve on a Technical Development Workgroup (TDW) with a brief to help identify needs and priority topics for ME/CFS information and educational materials. The aim of the project is "to assess and revise existing educational materials and create new materials to incorporate the recommendations of the 2015 Institute of Medicine (IOM) report".
Having watched CFSAC meetings for several years, I am just stunned to learn of this opportunity. It's further evidence of what increasingly looks like a genuine and significant change now taking place in US policy regarding ME/CFS. It's clearly an opportunity that the community must grasp with both hands.
The board have briefly discussed our options, and in the last few days I've had some brief conversations with a few US advocates about how we could approach this. The board is inviting input from our members about how best to take advantage of this opportunity, and of course the main task before us (with a deadline of January 4th) is to identify someone to act as Phoenix Rising's representative. We want our representative to be fully engaged with the forum community throughout the process, and our thinking is that our representative's brief will be to solicit and represent the views of our members, through forum discussions.
We do not believe the representative needs to be an MD or other medical professional, because the initiative is soliciting input from the patient community. We do think it would be far preferable if the representative were a US citizen, but I will ask Dr Unger whether that is an absolute requirement. I am not sure that a vote would be feasible, especially given the timeframe, but we will address the question of how to choose our representative as we progress.
Merry Christmas everyone! With the international momentum we're now seeing in ME/CFS advocacy, I think we can all look forward to an exciting year ahead!
COLLABORATION TO DEVELOP MYALGIC ENCEPHALOMYELITIS / CHRONIC FATIGUE SYNDROME (ME/CFS) EDUCATIONAL MATERIALS
Project Overview
In 2014, the Institute of Medicine (IOM) convened an expert committee to examine the evidence base for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) ¾ a persistent complex multi-system illness characterized by significant functional impairment accompanied by profound fatigue that can be made worse by seemingly minor physical or mental exertion. Symptoms include sleep abnormalities, cognitive dysfunction, autonomic manifestations, pain, and others. Between 836,000 and 2.5 million Americans are believed to have ME/CFS, which can severely impair their ability to live normal lives. Yet many people struggle with symptoms for years before receiving a diagnosis. Less than one-third of medical school curricula and less than half of medical textbooks include information about ME/CFS. Although many health care providers are aware of ME/CFS, they may misunderstand the disease or lack knowledge about how to diagnose and treat it. Such gaps in understanding lead to delayed diagnoses and inappropriate management of patients’ symptoms.
The IOM’s expert committee addressed these issues in its 2015 report, Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Redefining an Illness. Among other recommendations, the report’s authors propose new diagnostic criteria to increase the likelihood of timely diagnosis and care. They also propose a name change to systemic exertion intolerance disease, or SEID, to better reflect the disease’s main characteristic of an adverse response to any level of exertion.
What is the purpose of this project?
The purpose of this project is to update the Centers for Disease Control and Prevention’s educational materials and web content on ME/CFS, informed by the IOM report’s findings and recommendations and the perspectives of patients, providers, researchers and federal partners.
What are the project’s key features?
Under contract to CDC, a team from McKing Consulting Corporation will convene telephone or in-person meetings of an ME/CFS Communications and Education Steering Committee (composed of federal agency representatives) and a technical development workgroup (including patient and provider representatives). McKing will assist in gathering stakeholder input regarding the IOM recommendations, conduct a needs assessment regarding the current state of ME/CFS clinical management, and identify priorities for updating CDC materials on ME/CFS or SEID.
What is the project timeline?
Meetings of the steering committee and technical development workgroups focused on specific topic areas will be convened in early 2016, with a needs assessment conducted at the same time. Throughout 2016, the team will work with stakeholders to draft, revise, and finalize selected priority education materials ¾ including web content, brochures, a toolkit, infographics, and fact sheets ¾ that can be shared with different audiences. The goal is to have these materials ready for CDC clearance in time to be available for distribution and posting by the end of 2016.
What are the expectations of steering committee and technical development workgroup members?
The Steering Committee and Technical Development workgroup will be asked to participate in conference calls to plan the process for identifying needs, to prioritize topic areas and review materials and representatives will participate in one in-person joint meeting.