A long story about this moment in ME/CFS research and advocacy by journalist Virginia Gewin was published in Mosaic, a publication of the Wellcome Trust today. The article includes a great profile of Dr. Lenny Jason, coverage of the PACE trial and UK research, and includes quotes from Mary Dimmock and myself, among others. Here’s what I had to say:
Spotila thinks NIH views patients as “a pain in the ass”. “Maybe we are, but are we more of a pain in the ass than other groups waiting 30 years for improvements?” she asks. “I’ve been sick for over 20 years, my entire productive time of life is gone. I’m stuck in my house and couldn’t have kids. But that’s just me and I’m not even the sickest person.
“The pain, disillusionment, anger and frustration comes from watching the government not deal with this problem for 30 years,” she says. “If they listened to what people have been through, it would change opinions.”
I might take some heat for saying that NIH sees ME/CFS patients as a pain in the ass. But I have personally experienced that vibe from some people at NIH (not all!). And I absolutely believe that NIH (and HHS) does not understand where our anger comes from, and how they have contributed to it through their own inaction and inattention.
But this interview was conducted months ago, when I was still fighting with NIH over the misplaced P2P comments (a story which is still not over, by the way). Now we have the potential for more action and funding at NIH. And Dr. Vicky Whittemore is quoted in the story, acknowledging:
“We need to hear the concerns of the community,” she says. “At different meetings, I’ve seen these patients get cut off; people be rude to them, roll their eyes. It’s so disrespectful.”
We are a pain in the ass; I have personally been a pain in the ass to NIH and HHS on occasion. But you know what? You have to be a pain in the ass to get attention. You have to make people uncomfortable to catalyze change.
We have an opportunity now to make good on that change. If NIH is willing to listen, then let’s talk. If Dr. Collins wants to “start fresh with the patient-advocacy community,” as Brian Vastag says in Gewin’s article, then I am all in. I’ve seen the impact of having a patient representative participate in the FDA Working Group. If NIH is willing to change its orientation towards ME/CFS research and the advocacy community, then I will not let this opportunity slip.
Like I said in my post on the NIH plan: Let’s do this. We’ve waited long enough.