I attended my first CFS Advisory Committee (CFSAC) meeting on May 22nd & 23rd in Washington DC. I was there as the newest staff representative of the CFIDS Association of America, sitting in as a member of the public vs. an official seat at the table. While I have worked for non-profit advocacy groups – predominantly single disease organizations – for nearly 20 years, I had never heard of nor seen a committee like this. I learned a lot.
After “drinking from the fire hose” since day 1 of my employment and again there in that meeting space, I felt ready to make a public comment on day two. The CFSAC recently released the recordings from the two day meeting. If you were not able to attend or listen in, you can review it all here.
Below is taken from my public testimony, driven by what I saw and heard while there.
I am embarrassed to admit that despite being in the patient advocacy ‘business’ for nearly two decades, I knew little to nothing about CFS or ME. Though sensitive to the needs of patient populations, I was radically under-informed about this condition. I, like so many as ill-informed as I was, probably characterized CFS as “that thing where you’re tired, right?”
I now know how truly ignorant I was and how seriously debilitating this condition is. As someone who has been living outside the ME/CFS ecosystem, I’m a little angry and a lot embarrassed that I knew so little. While I clearly do not yet know enough about ME/CFS, the CFSAC committee or the overall ME/CFS landscape here’s what I do know…
The patients, their primary care givers, their families and loved ones are very smart. They know more than most of their doctors. They are passionate advocates and intelligent researchers. They have ideas, hypotheses, insights and experiences that you can never get in a lab or a government meeting without their active participation. It is beholden upon us to listen. To hear their intent and their heart through their impassioned words.
Those charged with staffing this committee are busy and wear many hats, but their service is a privilege. They carry a heavy load, but an even greater responsibility. Progress is slow because the government machine is complex and far too cumbersome. But they are a voice for so many – too many – who are too ill to speak for themselves so they must remain vigilant.
It is beholden upon the patient advocacy groups to seek to fully understand the complexity under which the CFSAC functions. To try and recognize the situation the committee members work within and assume their positive intent.
People are inherently messy and clear communication is consistently a challenge. Add a complex, debilitating, deeply life altering – life halting – condition and the challenges are magnified. We all must take some time to put the patients at the center and meet in the middle because they are counting on us to make significant strides on their behalf. So many that are suffering with ME/CFS are hidden away, sequestered from society, lost to their social circles. They are unable to participate in efforts like these; despite their desire to take action, they can’t.
The work we all do has great responsibility. There are better options. There are answers, if not yet solutions. We absolutely cannot get to better diagnosis, treatment nor a cure without the engagement of the patients. We must involve a broader patient community. The various patient organizations and groups must find ways to collectively mobilize our constituents and amplify their voices effectively. We must seek ways we can work together and play to our individual strengths, rather than focus on our differences because we all serve one patient community. We must all carve out time to listen, but more importantly to learn. The patients are our greatest asset and they have so much to teach us. It is time they were heard, time they were placed at the center.
The CFIDS Association is working to put the patient at the center of research. We are seeking ways to effectively collaborate knowing that we serve one global patient community. Working together we can find the answers and solve ME/CFS.