I prepared comments for the January 13, 2017 CFS Advisory Committee meeting, but when my time arrived I decided to wing it. Below is my best reconstruction of what I said, a mixture of my prepared and spontaneous remarks.
Start as you mean to go on. This is a commonly used phrase at New Year’s – supposed to be motivational, I guess. It means: Be intentional as you begin the new year. Start reading more books or taking more walks or whatever your goal may be, because how you start influences how you will continue forward.
I’m going to take my own advice and toss my prepared comments. Based on the discussion this morning, I want to scream: Let’s. Start. Now.
Start by tossing what’s been done.
Start by thinking outside the box.
If you want to design better educational materials, if you want to recruit new investigators, if you want to progress a treatment to approval within a decade then it is time. It is time to roll up our sleeves, work hard and work together.
I’ve been an activist for close to two decades. We have got to do something different in order to achieve different results. It’s time to ask how we can achieve the results we want, instead of following the same paths and procedures that are entrenched in the system.
There is so much uncertainty about the future budgets for research and assistance programs, and ME patients are extremely vulnerable. Many are wholly dependent on SSDI, Medicare and Medicaid. All of us – including all of you in the room who have a different disease or health condition – rely on the protection of the pre-existing condition rule to obtain health insurance. The vast majority of patients with ME have great difficulty getting appropriate diagnosis and care, and do not have access to the handful of specialists nationwide. And our future is very much dependent on full funding for NIH in general, and ME research in particular.
If we don’t do this, then I am worried. We are losing people with ME to suicide because they are too sick to go on. Efforts to help us are too slow and too small and too easily ignored. Promising scientific ideas gather dust while we wait for funding, and the ME researchers and clinicians alike are having difficulty finding experts to replace them as they retire out.
If we don’t do this, then I am scared. I am scared that I will recite variations of this litany year after year, as I get older and the last of my supposedly productive years leach away.
Let’s demonstrate forward thinking leadership, and set a high standard with which to measure federal agencies’ performance. Let’s sit down at the table, as equals, and quickly. We need to take ACTION. I have volunteered for every stakeholder engagement initiative I can. I am ready and willing to work with you for solutions. This is the only way I see to create a better future for people with ME.