I delivered the following testimony via telephone to the CFS Advisory Committee on October 3, 2012.

I would like to note something that Dr. Nancy Lee said today: “Nothing about me without me.” That’s what we’re asking for. FDA is moving in this way. We want HHS and its agencies to do so as well. Do nothing about me without me. Take our input. Leverage our expertise. We are highly motivated to assist you.

Even the newest members of this Committee have heard enough testimony from patients to recognize the despair that comes from living with a disabling, incurable disease that is barely recognized by most healthcare providers. My fellow advocates have spoken eloquently about the grinding isolation, pain and despair that they endure day after day.

But no one talks about the despair engendered by these meetings and the work of this Committee. I have heard many patients say that they don’t believe this Committee will ever help them. That there is no point in following your work because the government does not listen to your recommendations. There are patients who have abandoned the hope that this Committee will produce meaningful change. Their lives are the same, day after day, and they believe that all this Committee does is talk. After each meeting, and even today, I’ve observed a surge in frustration, disappointment and despair among my fellow advocates because another opportunity for progress has been lost.

Everyone at the table today has invested many hours in the work of this Committee. Regardless of your good intentions and engagement in these discussions, what matters to patients is meaningful change. If good intentions were all that was needed, we would have been cured long ago. Patients are looking for concrete progress, and they don’t see it here.

What do I mean by concrete progress? Performance measurement and metrics are buzzwords, but it all comes down to measuring change. Dr. Maier’s slide on the approval rates for ME/CFS proposals to NIH is an excellent example of this. Another hypothetical example is that NIH says that there are not enough ME/CFS research applications coming in to justify an RFA. But what if we could measure progress on that? First, we would need to know how many applications would be enough; that would be the goal. Then at each meeting, NIH could report on how many applications had been received in the previous six months. We could see whether the number of applications was increasing or decreasing over time, and we would know exactly how far we were from reaching the goal. This type of goal setting and progress measurement could be repeated across all the domains of this Committee. In my experience, knowing where you stand relative to a goal naturally leads to more targeted action.

But we don’t measure progress that way right now. The only goals we have are your recommendations, and the only measurements we see are the responses noted in the Recommendations Chart, which has not been updated since November of last year. And this is why we despair after each meeting – nothing is changing in our lives and we can’t identify what progress is being made, if any, through this Committee.

In the absence of metrics from your side of the table, I thought I would share with you my own metrics. I tracked a variety of things in my day-to-day life in order to share some concrete numbers with you.

  • 111 days have passed since your last meeting
  • I have been disabled for all of those days
  • I left the house a total of 21 times, typically for three hours or less
  • 5 of those outings were for healthcare visits
  • I had an additional 9 email and phone exchanges with my healthcare team
  • I paid to have groceries delivered 7 times
  • I paid to have my house cleaned 7 times
  • My doctors currently prescribe 9 different medications for me
  • I took a total of 1,554 pills since your last meeting
  • I had 4 episodes of tachycardia and near fainting
  • There were 14 days since your last meeting when I could not get out of bed
  • I could not drive a car at all
  • I could not take a walk at all
  • This Saturday is the 18th anniversary of the day I got sick. If I had given birth on October 6, 1994, that child would now be an adult.
  • ME/CFS ripped into my life 6,567 days ago. I could have spent those days building my legal career or writing books, or maybe both.
  • Instead, for 6,567 days I have endured every insult and change that ME/CFS has thrown at me.

These are my metrics and this is my charge to you: Show me progress. Show me measurable change. Make a difference so that I can stop counting how many days and how many ways ME/CFS is destroying my life.

This entry was posted in Advocacy and tagged , , , , , , , , , , , , . Bookmark the permalink.

6 Responses to Metrics

  1. Kati says:

    Well done Jennie!

  2. John says:

    I’m not sure that the Committee is the source of the problems and to whom displeasure should be voiced. The idea of setting goals is a good one but is this really the job of a volunteer Advisory Committee? It sounds like that should be the job of some sort of govt. agency. You know, the govt. agency that should be in charge of ME/CFS and therefore have some sort of responsibility in the matter but doesn’t? Yeah, that one. I think Cort Johnson summed it up well in one of his pieces where he said that with ME/CFS being ‘shared’ (ie ignored) among various agencies then there’s no responsibility of any one agency to see that anything gets done.

    I think what we as patients could do is to come up with a list of recommendations that we would like to see made and then make a concerted effort to try and get those recommendations made at every meeting. One example of this would be the recommendation for 5 Centers of Excellence @ $1.5 million per center per year. This would be $7.5 million a year from the NIH, which is chump change to them, however it would more than double the amount spent on ME/CFS and would engender a ton of goodwill among patients, at least as long as some dipfuck wasn’t running one or more of the Centers. This recommendation has been made numerous times in the past but I don’t see why it shouldn’t be made at every single meeting to really drive the point home. If the Committee’s job is to make recommendations, and this is one of the most important recommendations they could make, then the Committee is not doing its job every time it does not make this recommendation, IMO.

    Going back to the first paragraph, another recommendation that might be good to make would be to remove ME/CFS from the Office of Women’s Health and put it back in the NIAID where it belongs. Then if the Committee made these recommendations year in and year out, twice a year at every meeting, then we as patients could contact members of the press and say ‘look at this- this Committee has made X, Y and Z recommendations for how many ever meetings and years in a row but the DHHS hasn’t done jack about it’. That seems like something that might be reportable by a journo. It would also be a focus point to point out to Senators and/or Congresspeople to ask for their help on the issue, a focus point for advocacy campaigns, etc.

    • Jennie Spotila says:

      You make a lot of good points, John. You are correct that Centers of Excellence have been recommended multiple times, as has an RFA from NIH. I think there would be opposition by some patients to a move to NIAID because Tony Fauci is not perceived well by some.

      In terms of whether an advisory committee can set goals, I don’t see why not. I would like to see the committee think about what progress they need to measure in order to assess how things are going. What data points would be helpful to them? For example, Dr. Susan Maier presented data at this meeting on the overall acceptance rate of CFS proposals at NIH. That was necessary and powerful information, and it led to a committee discussion about whether the low funding numbers were due to few applications or other issues. Some forethought by the committee about what data IT would like to track would be helpful.

  3. John says:

    Then if we did come up with some ‘permanent’ recommendations we could make up some posters or t-shirts or something to bring/wear to the meetings to have up/wear during the whole meeting. If everyone was wearing the same t-shirt that might make an impact.

    Recommendation 1- 5 Centers of Excellence
    Recommendation 2- Move ME/CFS from ORWH to NIAID

  4. Andrew K says:

    Well said.
    Time for the buck passing to stop and measurable progress to be made.

  5. Turtleknits says:

    You are so eloquent. I am in awe.

Comments are closed.