ME community members were caught off guard when the proposed 2016 Senate appropriations bill zeroed out CDC funding for CFS research. Several advocates scrambled to address this and their efforts to be heard appear to have paid off.
But scrambling is not something ME advocates can, or should do. Health- and resource- wise we can’t afford to scramble because it damages our health. Strategic, coordinated and planned approaches would enable less intensive expenditure of resources and allow us to take a measured approach to concerns.
To avoid last minute scrambling, here are a few CFSAC-related things advocates might want to work on.
CFSAC VOTING MEMBERS
In 2016 the terms of 4 CFSAC voting members (Casillas, Collier, Corbin and Fletcher) will expire. FOUR (!) new members out of a total of 11 voting members, means that more than one-third of the committee members will be replaced. That’s a large portion of the voting membership.
The HHS vetting and approval process for advisory committee members is quite lengthy, which means that the request for nominations will probably appear soon. Typically there’s about a 30 day window from the published announcement to the submission deadline, so giving thought to this right away, allows time for recruiting highly qualified nominees and allows for the development and submission of nomination packets. (For reference, the most recent notice was September 2013. The process may be different this time.)
Required expertise (stipulated in the CFSAC charter)
“Of the eleven members, seven shall be biomedical research scientists with demonstrated expertise in biomedical research applicable to ME/CFS; four shall be individuals with expertise in health care delivery, private health care services or insurers, or voluntary organizations concerned with the problems of individuals with ME/CFS.”
Of the CFSAC members whose terms end in 2016 –
Mary Ann Fletcher is a biomedical researcher,
Adrian Casillas and Lisa Corbin are healthcare professionals,
Rebecca Collier is a nurse associated with insurance (I believe).
Additional considerations
The CFSAC has a lot of work to do and the learning curve for advisory committee members is steep under the best of circumstances.
In order to best serve the community, all committee members should be highly qualified and knowledgeable individuals who are fully engaged with the work of the CFSAC.
Because of the steep learning curve and the important work that the CFSAC needs to do, ALL CFSAC nominees/members should be well versed in the science, history and politics surrounding this neuroimmune disease, so that from their first day on the committee they all work effectively.
Think about which category of charter-stipulated-expertise the nominees meet. (The categories are – biomedical research related to ME/cfs, expertise in healthcare, insurance, voluntary organizations serving people with ME/cfs.)
It might also be worth examining the current roster to see if there are additional gaps in charter-required expertise.
Which qualifications make for the most effective CFSAC members?
Before initiating the nomination process for anyone, remember to verify their willingness to serve. (In past years, nominees have had to submit letters stating their willingness to serve.)
We have no way of knowing which nominees HHS will appoint to the CFSAC, but ensuring that HHS receives nominations of numerous highly qualified individuals, increases the chances that voting members of the CFSAC will be appropriately qualified individuals who, from the start, can work diligently and effectively on matters related to ME.
The CFSAC is supposed to be our venue for getting things on the public record.
The CFSAC charter is up for renewal every two years which means that in 2016 the CFSAC charter is up for renewal.
Renewal is not automatic/guaranteed, so it is worth devoting time to the who, what, when, why and where of charters and working towards getting it renewed.
Since ensuring renewal is likely to be a protracted process, it could be helpful for a team of people to share this work.
Additional considerations
Are there charter changes that would be beneficial?
Would it be appropriate to examine the charters of other HHS advisory committees to see if they include language/provisions that would strengthen the CFSAC charter?
Charter designation
Would it be more appropriate if the CFSAC were a Presidential, or statutorily mandated advisory committee as opposed to being a discretionary advisory committee?
If so, who will follow through to make it happen?
Using unified talking points when working on charter-related issues will help ensure that TPTB aren’t confused by differing messages.
ENGAGEMENT
CFSAC meetings take place (at most) twice a year. Is that sufficient to adequately address material from the working groups, other related concerns within HHS and SSA, etc.?
The current DFO has said she does not have sufficient time to act as DFO and do “her other job”. Will the new DFO be wholly devoted to ME matters?
Is the engagement model we have with the CFSAC and HHS satisfactory? Is the level of openness and transparency in communications and actions satisfactory?
Does HHS take this neuroimmune disease into consideration when developing strategies, policies and/or disseminating information?
Do we need someone at HHS (at a prominent level) who can provide continuity between meetings and outside of working group activities and who can ensure that ME concerns are taken into consideration across all HHS activities?
Would it be useful to have someone more engaged with the community and the activities of HHS to progress matters related to ME?
The IOM report used the model of the HIV Czar and recommended a Czar for this disease. Would this improve HHS’ level of engagement regarding this disease?
If the community is not satisfied with our current engagement model with the CFSAC and HHS, what changes would best serve us and how will we ensure that they come about?
Speak Up About ME 
There is concern among a number of us that, because of the continued animosity shown by the government liaison to CFSAC towards patients, the nominating process will include ringers – people whom NIH want on the committee, who will then be chosen instead of our nominations. That has happened before.
There have also been years when the same patient organization named the public members year after year after year.
Because of that, I wonder if it would be possible for us to SEE the nominees in advance of the selection process. We would know, for example, who would not need to be educated from scratch about this disease and about the history of the government with regards to the disease.
I hear your concerns Mary.
I don’t know if there is a way to know in advance who else is nominated. If nominees are willing to share their names with us that would be great.
The list of nominees will eventually be available via FOIA. However that does not help us before members are approved by HHS unless nominees are willing to share their names.
I hope that advocates will seek out those who are best suited for the work of the CFSAC, ask if they are willing to serve and ensure that, if willing, the nominee submit their nomination packages.
I hope that we would not be put in the position of having to question the credentials of CFSAC members. My hope is that the greater the number of qualified nominees, the greater the likelihood that some will make it onto the CFSAC.
I strongly encourage people to find qualified people to fill the upcoming vacancies (remember to figure out the category they nominee would fill) and get them nominated so that the new CFSAC members are highly qualified!
I agree that it helps to nominate more people. State organizations should all be nominating people they think are qualified. We have in the past been able to get them to vary which organizations are represented on CFSAC – can’t very well do that if we don’t nominate people.
Just to clarify – individuals/groups of advocates can also work on getting qualified people nominated.
If the work of the CFSAC is important to people, I hope they will ensure that many qualified nominations are submitted.
Additionally I hope that if people feel the work of the CFSAC is important, that people will work on getting the charter renewed and strengthened, and that people will work on the engagement model if that is important.