In addition to all the ways you can participate in and comment on the upcoming FDA Drug Development for ME/CFS Workshop, you can also participate in two surveys that will collect data for presentation at the Workshop.
The survey, designed for people living with ME/CFS and those closest to them, poses open-ended questions to allow respondents to describe the symptoms, daily impacts that matter most, as well as share personal perspectives on treatment. Questions are worded in the same way the FDA has asked them; we’ve supplemented with some some additional questions on the same topics. You can answer with phrases or lists; you do not have to write complete sentences.
All survey responses are anonymous and confidential. We intend to present an analysis of the collective responses at the FDA meeting and at the May 22-23 meeting of the federal CFS Advisory Committee to better inform the federal health agencies about these issues.
The survey will take an estimated 30-60 minutes to complete, and your responses are completely anonymous. Follow this link to begin the survey.
Dr. Lily Chu (who is serving with me on a panel at the Workshop) and Dr. Leonard Jason are also conducting a survey. Lily says:
The main purpose of this survey is to help answer questions the FDA has about ME and CFS symptoms, their impact on people’s daily lives, which treatments patients are using or have tried, and which treatments patients have felt to be effective. Your answers will help teach drug companies about the symptoms/ severity of these illnesses while considering new medications for treatment. I will present the results of this survey at the April FDA meeting.
Instead of asking you to type in answers to each of FDA’s questions, our survey allows you to choose specific answers to questions while allowing space for comments. This may save you some time/ energy typing and also remind you to think about certain symptoms, their impact on your life, and certain treatments. It also allows us to compare your answers to others with ME or CFS.
If you want your answers to be part of the results shared at the FDA meeting, please complete the survey by APRIL 17. The survey will remain open until May 10 though and all responses submitted will be included in our final report to FDA in August.
This survey will take an estimated 30-40 minutes to fill out, and your responses are completely anonymous. Follow this link to begin the survey.
You can participate in both surveys. In fact, I strongly encourage you to participate in both surveys. Each survey needs enough responses to make the data analysis meaningful. You can also participate in the surveys and still submit comments to the FDA. Again, I strongly encourage you to do so. As I said earlier this week, this meeting is a showcase and significant opportunity for the ME/CFS community to teach the FDA and drug developers about our disease. I hope you will invest time and energy over the next few weeks to participate in the surveys and speak directly to the FDA.