what i was trying to ask earlier was WHEN exactly this panel shake up happened. does no one know? i'm asking because at the meeting with the NIH on Sept 7th, patient advocate charlotte made a very strong and good case for how absurd the make up of this panel was (dentists?). so i wonder if the change happened due to her Sept 7th face-to-face explanation of how important this panel is and how much we needed it to change. go, charlotte!!!!
my learning from this: we need to establish a diverse patient committee that meets regularly, ongoingly, and face-to-face (or phone conference call) with NIH officials. Now.
as i have said to bob and charlotte, my co-organizers on the "Time for Action NIH 'What have you done for ME/CFS today?'" campaign, my feeling is that these ongoing meetings should have been requested in exchange for ending the Time for Action campaign. as in, we'll stop inundating you with daily emails/calls/faxes in exchange for monthly meetings where we discuss the NIH's progress on ME/CFS issues. unfortunately, we did not request this at the time. but my feeling is that now is just as a good a time as any to request it.
at these envisioned monthly (or every other month) meetings, the patient community could let NIH officials know what is (and what is not) important to change (in their sphere of influence, of course), and what changes should take priority. and at regular meetings the patient committee could serve as a type of watch dog group, helping to guide the NIH when we see them going off track (for example, we could have told them that adding dentists to a cfs grants review panel was not the best idea). at these meetings, we'd tell them our grievances and then our suggested remedies. they'd tell us what they will do in response to our grievances and suggested remedies. and at subsequent meetings, we'd get an update on their progress. with these meetings, they'd essentially be held more accountable for implementing what they *say* they will do. and knowing that they have a pending meeting in 1-2 months time, where they will have to report back to the patients, will keep a fire lit under their butt, so they feel a healthy sort of pressure to do their work and not slack off. after all, our lives are on the line. and at regular meetings we would gently remind them of this fact when they see our faces or hear our voices (phone conference calls).
though it was wonderful that mangan meet with patients spontaneously at CFSAC, i do not think that having a spontaneous meeting serves the same purpose or would get the same results as ongoing meetings with a patient group. similarly, i don't think that having 1 or 2 patients, however smart and well-meaning they are, being informally (and back channel-y) in touch with 1 or 2 NIH reps would get the same results as ongoing meetings with an established, diverse patient committee. of course, there is a role for and a usefulness of this type of arrangement, too. but it does not serve the same purpose as, or take the place of, the larger patient committee meetings. also, there is always the concern that this type of informal, backchannel arrangement would lead to the NIH's coopting of just 1-2 patients. (i am not saying that this has happened, just that it can easily happen. of course a whole patient committee can be coopted, too!)
these are my thoughts.
i see only gains from such ongoing meetings. no down side.