Finally! The first ever double blind placebo-controlled FDA approved treatment trial for ME/CFS is in full swing! And I got to be a part of it!
This trial is a combo of nutritional supplement and a very low dose of Ritalin. I’ve been down the road of stimulants early in my illness. They did really bad things for me and really messed up my ANS. It was acknowledged that stimulants haven’t been good for ME/CFS, but the theory here was that the supplement worked in conjunction with the low dose of Ritalin to help it have a different effect.
I was a bit skeptical, due to my past experience, but at the same time, my brain function has been so low lately, that I had a hope that it would at least help that! And what a great thing to be a part of this study – even if it didn’t work for me.
This is me on the first day of the study. When you have POTS, laying down is the thing you do :-) Plus I caught some nice sunshine!
I am 99% sure I was on the real medication all summer due to some significant side effects. Though it was very difficult, I stuck with it to the end. I had headaches the first few weeks. Throughout the 3 months I had a lot of heart palpitations, tachycardia, chest pain, and difficulty sleeping.
When the 3 months was up, I was anxious to get off the medication. Unfortunately, I had a horrible 5 days of withdrawal. It irritated me a bit that they had not warned me or taken this possibility into consideration in development of the study.
But I made it through and coming out on the other side, I can tell I feel much better off the medication than I felt all summer on it.
They said they’ve had some good response to this treatment, but I didn’t. Disappointing? Yes, but I’m still proud I was able to be a part of this study. Let’s hope there are many more to come and this trial will help my doctors understand my body and illness a little more. But…No more stimulants for me… ever!