Australian media just published this emotional interview featuring journalist David Tuller moved to tears (link below). Tuller is one of the most outspoken and effective activists for integrity in ME/CFS research. Many prominent academics in this field have either produced lazy research or published outright fraudulent results. This harms patients because it wastes limited research funding. If we don’t we don’t have sound biomedical research, we can’t develop treatments, and we can’t get better. Thankfully, Tuller has forcefully spoken up, even when the medical establishment ignored this cause. I’m sharing my reaction to the interview here because we will only get help if healthy people can see us.
From the way he speaks in this clip, Tuller clearly is deeply invested in this work. I’ve often thought, why does he care so much about us? He doesn’t have any family with this. He once implied, it was because he lived through the AIDS crisis. He said, “The lucky thing about HIV is that the patients were dying. In that sense, they were lucky, even though nobody cared about them. I’m saying this as a 60-year-old gay man living in NY at that time. Nobody cared, but you couldn’t pretend people weren’t sick or they were malingering or didn’t want to go to work. You don’t want people to die but when people are dying left and right you can’t pretend they aren’t really sick.” I wonder if he sees this new crisis as personal because of what he lived through, or if he is trying to correct the past, and prevent history from repeating itself here.
In this video, Tuller asks a patient, “Do you have any hope for a cure or recovery at this point?” Having previously traveled, she says, “You know, sometimes, I still dream about getting back to the Congo, but it would seem to me that this is my lot now and I just need to make what I can with this lot. I want to say no one is fighting for us but you’re fighting for us.”
Tuller continued, “Patients have written saying, ‘Fewer of us are going to kill ourselves now because of your work.’ I thought if I stopped I’d be killing people.”
It was only three months ago I was considering leaving school. Preparing for December break, I struggled to pack over three days crawling around on my floor. Once home, I spent every day in bed, food brought to me for each meal. My friends urged me to withdraw from the university and try to get disability. After all, what was the point of paying for a degree I would not be able to use? I certainly was not on track to being an economist.
I recently found to-do list from that break. 23 December, 2017, the only action item was, “Do NOT leave the house,” NOT written in all capitals, because I kept leaving and making myself worse. My daily digital reminder was, “what less can you do?” Despite my health declining every time I left, it was hard to stay inside because, it was boring, and because, I didn’t want to admit that was what my life had become.
I cried watching this interview because it was only a short time ago I felt just like her. I thought my life was over. My heart may have still been beating, but everything I associated with life, was gone.
I wish I could tell that patient that it gets better, that this is not her lot. I can’t tell her that. I got better with treatment that is not available to 99.9% of patients and I. got. lucky. There is no silver lining. What I can tell them, is that I’m going to keep working as hard as I can until things change.