On May 5, 2014, the IOM Committee held another public meeting concerning their work on diagnostic criteria for ME/CFS. For this meeting, the committee focused a portion of the agenda on some specific questions for patients:
- In your opinion, what are the most important issues that healthcare providers should be educated about when it comes to diagnosis of ME/CFS?
- 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?
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 mirroring the committee’s questions. 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.
Read the report HERE: IOM_Patient_Survey_4_22_14
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.”
Information presented at the meeting is now available on the IOM website, HERE
All testimonies were recorded and the videos can be access HERE
You can sign up to receive email updates directly from the IOM HERE (simply scroll down and fill out the online form)