Tuesday, May 14, 2013


Jennie Spotila, working for the rest of us - with a smile!

The following is a blog post by Jennie Spotila. While the ways of the Federal Government may be mysterious, they are not entirely beyond our control. For once, people with CFS/ME have the opportunity to determine what goes onto the CFS Advisory Committee's priority list. Why is this important? For one thing, we constantly complain that the government does not fund CFS/ME research - so, now is the time to say something about that! This is an easy thing to do! I just sent off my letter to the committee using Jennie's template and it took a grand total of two minutes!. First I registered HERE. (Fill out the form.) Then I copied this email address: CFSACMay2013@seamoncorporation.com into a new email. Then I copied Jennie's template and pasted it into the body of the email. Then I sent it (after making a few changes). Voila! (Don't forget to put CFSAC meeting into the subject line.) For good measure I also attached a doc file of the letter. It was my good deed for the day. Make it yours too!

By Jennie Spotila, Occupy CFS

I wrote an article for Phoenix Rising about a few things we can expect at the upcoming CFS Advisory Committee meeting on May 22-23rd. Today I want to focus on why you should participate, and how to do so. This is urgent because you have less than one week to send your comments in to the CFSAC!!!

Dr. Nancy Lee has said that the Committee will be discussing the High Priority recommendations list. You might recall that an earlier version of that list was trashed after Public Citizen pointed out that it had been created behind closed doors and without public input, and therefore was in violation of the Federal Advisory Committee Act. That’s why the list is on the agenda for this meeting.

This is YOUR chance to tell the CFSAC which of their recommendations you think should be the highest priority. Their last attempt at this included recommendations on research funding but also included conducting a public awareness campaign and understanding how recommendations are sent to the Secretary. Are those your highest priorities?
We have to speak up. If we stay silent, we send a signal to the CFSAC: go ahead and make decisions behind closed doors without our input. If we stay silent, then we have no right to complain that the CFSAC priority list does not reflect our own priorities. If we stay silent, then it is likely that the final list will not reflect what we think is most important.

Do not give in to apathy! I know we are all crashed after the FDA meeting. Even the staunchest advocates are struggling to find the energy right now. But we need to do this. We need to sign up for public comments slots if we can, or at least write to the CFSAC if we don’t have energy to speak. Even if all you do is write down your top three priorities and send that in, every message they receive makes it harder for them to ignore the views of the community.

Here’s how you can make your voice heard on the highest priorities:

Look at this list and choose between three and five of the recommendations that you feel should be made the highest priority by the CFSAC.

Sign up for a public comment slot  if you are able to speak for five minutes. The deadline is May 15th!
Write down your highest priority recommendations and email it to CFSACMay2013@seamoncorporation.com. Do this even if you are too sick to use a speaking slot. It is very important that you send your comments in so that they become part of the public record, so make sure you send them in by the May 15th deadline!

Make your voice heard! Tell the CFSAC what you think should be the highest priorities for DHHS. Whatever the outcome, I think we’ll be stuck with the list for some time, so please do whatever you can to express your views NOW.

Jennie has provided a template for a comment letter to the CFSAC  HERE.

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