Please take part and share widely (re April 2013 FDA meeting)

This is an excellent opportunity to provide data for the FDA meeting on how ME(cfs) impacts our lives and what treatments patients have tried and/or currently use. Data is a measurable way to show drug companies about our symptoms and about illness severity.

This survey can be taken by people with ME(cfs) anywhere in the world – if you are outside the US, leave the section asking for US region blank.

Hi, my name is Dr. Lily Chu. I am a physician and public health researcher who has personal experience with ME/CFS.  Recently, I was invited by the US Food and Drug Administration (FDA) to serve on the patient/clinician panel for the  Drug Development for ME and CFS Workshop being held by FDA April 25-26, 2013.

To represent the ME/CFS community accurately, I asked Dr. Leonard Jason and his team to help me design an anonymous online survey. 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. The information collected may be different from what you have sent (or plan to send)  in to FDA so we encourage you to participate even if you have already participated in other ways. Survey responses are anonymous and will be kept confidential. 

The survey should take 30-40 minutes to fill out, depending on how many comments you have. Text boxes on the survey look small but will expand to fit what you type in. Since this is an anonymous survey, the program does not allow us to save partially completed responses.You may want to look at the survey first,  think about/ write down your choices, and then return to fill it out when you are ready. You may also choose to have someone else help fill in your answers for you after you have informed them about your choices.

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. 

The survey is at: http://kwiksurveys.com/s.asp?sid=mnwykzr9g2ae1l5112627

If you have any other questions or comments, write to us at ellesee123@yahoo.com.

THANK YOU FOR YOUR PARTICIPATION!

— Lily 

You may also participate in the CFIDS Association survey https://www.surveymonkey.com/s/pt-focused-survey, as well as provide public comment and answer the FDA questions (shown here on the draft agenda http://www.fda.gov/downloads/Drugs/NewsEvents/UCM344665.pdf ).

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