I’m having a pretty rough week, so I’ll keep you all informed by copying and pasting this post from Sue over at Learning to Live with CFS about the ways in which people with ME/CFS can contribute to the knowledge base being collected in preparation for the upcoming FDA Workshop on drug development. I’m going to try to get the energy up to fill out the surveys even though I’ll probably never take the drugs they (might) develop. Haha.
Two Ways to Help ME/CFS Treatment Move Forward
The CFIDS Association is conducting a survey based on the questions FDA posed in the Federal Register notice for the Workshop. Responses to the survey will be collated and presented at the workshop. It consists of open-ended questions (full sentences not required – brief responses or bullet points are fine) and will take between 30-60 minutes to complete. Follow this link to begin the CFIDS Association survey.
The second survey has been designed by Dr. Lily Chu and Dr. Leonard Jason, who will be participating in the FDA workshop. Dr. Chu will present the results of this survey to help teach the FDA about ME/CFS from the patients’ point of view. This survey is multiple choice with some room for additional comments and should take about 30-40 minutes to complete (mine only took 25 minutes to complete). Responses are needed by April 17 to be included in the FDA meeting, but the survey will remain open until May 10, and all responses included in a report. Follow this link to begin the Chu/Jason survey.
If you can manage both surveys, great – they are different surveys and they can use all the patient input they can get and the more responses they get, the more meaningful the data will be. If you can only manage one, just choose one – your participation will be helpful either way.
You can also participate directly in the meeting in person or by giving public comment. This blog post from Occupy CFS provides details and links (I also borrowed heavily from another Occupy CFS post for the survey information above since I haven’t been feeling well lately – thanks, Jennie!)
This FDA workshop is a big deal, so help out however you can!
P.S. I believe the CFIDS Association survey is open to patients all over the world, not just in the US. Questions on the survey will ask where you’re from so that US data can be pulled out, but the more responses, the better! If the FDA gets on board with focusing on ME/CFS, it will help make treatments more available all over the world.