Thank you Jenny, for your work on this. I agree with your comment.
Keeping up the drum beat of the urgency of dealing with ME appropriately and what the top priorities are is essential, IMO. You don't have to spend a lot of time and energy. In fact, I recommend spending just a little time on this in order to conserve precious energy.
You could simply write a few simple sentences on the above topics- the urgency and top priorities. You could state that these are very important topics but you are too sick to write anymore, just so they don't mistake brevity for lack of interest or lack of importance.
If many people took a little bit of time to just write a few sentences and send it in, this would be more helpful, IMO, than a few people writing 5 page testimonies.
Please write in! thanks guys!!