This week, an investigative journalist David Tuller published his articles on PACE trial (Trial by Error first, second, last), exposing the flaws from one of the most influential clinical study for CFS. Cort Johnson’s blog does an excellent job at summarizing lengthy articles published over three days, so I won’t go into the problems of PACE trials and what the articles revealed. Instead, I would like to share my quick experience with PACE trial.
When I was hospitalized in May, I had to deal with team physicians who had no idea about ME. It was frustrating to have to explain that I had this serious disease that they had no clue about, and the acute exacerbation could have a long term consequences. The resident doctor on my team went home and did some “research”. Of course, what she read was the PACE trial.
I’ve been MIA for a while from this page and just wanted to check in and say I’m still here! Contrary to the behavior of disappearing, I’ve not gotten sicker. I was improving gradually (I consider this extended recovery from giant crash from this spring), with some ups and downs. And today is the first time in ages that I feel good!
My definition of “good” now is certainly not the same as when I was healthier, or even earlier this spring, but to give you an idea, during summer, writing anything for this blog was pushing my limit and I had to deal with consequences. Today, I’ve been using my laptop for a couple of hours working on stuff and it’s not having me reach for anti-nausea medicine. That can change any moment, but the fact that I’ve managed these many brain-powered hours is impressive for me.
I have several posts that I was working on, and if I have more good days, I will get back to them. The first one would be about the reasoning behind quiet months despite gradual improvement (short spoiler: so that I would have more improvement).
I am feeling that my battery is starting to run low, so I’m going to wrap up short here, but I think it’d be very telling for me if I can get through next couple of weeks without any relapse. I already came unscathed from one yesterday. I would have survived multiple doctors appointments over two weeks and upcoming dooms-day brought to me by pharmacy, doctor’s office, and health insurance (it’s the reason I wasted my rare good day instead of being more productive). Though, I certain wouldn’t mind if I can omit the dooms-day stuff among my feats because someone fixes it before the weekend.