Saturday, March 23, 2013

ME/CFS survey

Note: This looks to be a different survey to the one launched by the
CAA, but still worthwhile in that the results will be used both at the
upcoming FDA meeting and possibly also as part of published research
(with the resul ts anonymized).


Welcome to the Drug Development for Myalgic Encephalomyelitis (ME) and
Chronic Fatigue Syndrome (CFS) survey!

This survey is being conducted by Dr. Lily Chu and Dr. Leonard Jason's
research team, not by the US Food and Drug Administration (FDA). The
main purpose of this survey is to help answer questions the FDA has
about ME and CFS symptoms, their impact on daily life, which
treatments patients are using or have tried, and which treatments
patients have felt to be effective. Your answers will help teach
pharmaceutical companies about the symptoms/ severity of these
illnesses while considering new medications for treatment. Dr. Chu
will present the results of this survey at the April 25-26, 2014 FDA
Drug Development Workshop for ME and CFS. We may also publish some of
the information we gather in order to inform the wider
medical/scientific community of your experiences with this illness.

Instead of asking you to type in answers to each of FDA's questions,
this survey lets you choose specific answers to questions while
allowing space for more 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 affected by ME or CFS. The information
collected may be diff erent 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.

THANK YOU for your participation!

No comments: