Very interesting post on Jenny's blog, as always and here's some key stuff from it below. Some important links for you to take action haven't copied across - please anyway read the whole thing on her site: http://www.occupycfs.com/2013/03/19/showcase/ The patient session on April 25th will be watched closely by more than just ME/CFS stakeholders. If I were an advocate for ALS or gastroparesis or narcolepsy, I would pay very close attention to this session as the test case for how future PFDD meetings will be conducted.The same is true for drug developers and researchers, including those who do not currently work on ME/CFS. This meeting has the potential to be one of the biggest stages our ME/CFS community has ever had.[...]We have four hours on April 25th to describe how ME/CFS affects us, list the many treatments we’ve tried, and make the case for immediate investment in developing new treatments. We will have the microphone for half a day, and we will be watched by FDA, HHS, drug companies, and advocates for other diseases. What we say at the meeting will help us or hurt us. Showing drug developers and FDA that there is a market for new treatments, and telling them which symptoms to target and how to measure improvement, will help us. Complaining about the meeting or the long list of things that FDA and other agencies have done wrong will hurt us.This meeting is a tremendous opportunity for us to be heard. Let’s give voice to the symptoms and treatments we deal with. Let’s fill the public docket with comments. Let’s carefully craft our answers to the questions FDA has posed to us. If you can attend the meeting, sign up to be a panelist or commenter. If you can’t make it, sign up for the webcast and submit written comments. I’ve explained how the signup process works and the questions FDA is focused on, and I’ll be doing more posts in the next 5 1/2 weeks. The CFIDS Association is planning some webinars to help you prepare as well.This is our moment. FDA wants to hear what we have to say about our disease and the need for treatment. We have to get this right. Let’s use this opportunity to teach people about our disease. Let’s show the world what we need, and that we’re willing to participate constructively in the process to get it. There’s no way to know when (or if) we’ll have this opportunity again. Let’s bring our A game to this showcase event.