- Last Updated: 29 December 2015 29 December 2015
The IOM report is this month’s Big News, and it has generated quite a bit of response from the patient community, much of which is focusing on the name issue. However the proposed new name is only one part of the report’s content and recommendations, and the rest of the report is equally important, even more so to the medical/research community. We need to make sure that the name controversy does not overshadow the rest of what is so important in the report. The full report, in addition to a Report Brief and Key Facts sheets, can be found here: http://www.iom.edu/Reports/2015/ME-CFS.aspx.
It is key to make sure the patient community has a voice in what happens next. The recommendations (perhaps tweaked as a result of the evaluation of the report) will go nowhere if patients don’t support them, and we will have missed an important opportunity to gain credibility for this illness within the broad medical community. So we need to gather information from the patient community that can be used to make our next steps as constructive as possible.
As one way to do this, our Association is using an information-gathering survey to reach out to our members and friends through our website, newsletter and Facebook page. This survey is intended to put a focus on the entire report, not only the name. The goal is to identify the major issues and concerns of patients and advocates, as well as the positive aspects of the report that we can build on. The summarized results of the survey will be provided to the Chronic Fatigue Syndrome Advisory Committee (CFSAC) as valuable stakeholder input.
The link to the survey is https://www.surveymonkey.com/r/G2LC3MH. Please note that this is not a multiple-choice survey. There are four open-ended "content" questions plus a general comment field. If you have read and thought about the report we would love to hear from you. Responses from people outside the U.S. are also welcome. Please respond by March 20, 2015.
1) What are the positive things in the Report that we can use to move forward?
2) What questions do you have?
3) What goals would you like to see accomplished with regard to this illness in the next 3 - 5 years? Are these goals supported by the Report?
4) What parts of the Report are problematic for you?
5) Do you have other comments you would like to share?
Charmian Proskauer, President
Massachusetts CFIDS/ME & FM Association
Working to improve the lives of all people affected by ME/CFS/FM, advancing awareness, care, treatment and research