Summer 1993 Vol. 04, No. 2 So Close Yet So Far
To Whom it May Concern:
I’m writing this in hopes that my experiences may be significant in the lives of others who also suffer from fibromyalgia; or other CFIDS type disorders.
I am twenty-two years old, thin, white, female, the typical scenario for most of us with fibromyalgia. I have been sick for about seven years now. Each day is a test of mind over matter. I’ve got to forget the pain, the fatigue, and work beyond my limitations. In short, life is an ordeal.
I am very persistent and have made it a point to put my intelligence to use in understanding what I am suffering from. My psychological profile is what I would consider a very positive one given my circumstances. I am not a depressive person, but I do get frustrated. I’d consider that normal. I remember what life was like being a normal, healthy young person. Up until this disease surfaced I was healthy, and very athletic. This is primarily the most frustrating part of all this for me.
On top of my severe fibromyalgia I suffer chronic daily headaches and almost daily migraines. I suffer deep pain in my joints and biting pain in all the typical tender points. On top of all this is extreme fatigue. I am barely able to function and when I do I pay the price, and it is dear.
Over the years I have been prescribed many different drugs in varying dosages and combinations. There never has been anything I’ve taken that works to make life comfortable. As it seems after all is said and done, there still lies the exact same problem and nothing has changed it in any noticeable way. Life is still very painful and exhausting.
In my pursuit of personal enlightenment I have experimented with some psychedelics and used those experiences as spiritual and intellectual aides. I have taken LSD, psilocybin, and smoked marijuana. I know what is meant in terms of sensations and feelings produced; such as " euphoria, tripping, high." These vague terms are often totally ambiguous to those who have never experienced these psychoactive chemicals.
In the spring of 1992, I tried ecstasy (MDMA). There were four other people besides myself on this drug, their experiences were much different than my own. When the drug took effect the others that I was accompanied by were experiencing euphoric feelings and being mentally and physically high. My experience was different, I felt "normal" ( normal being as I was before my fibromyalgia surfaced). I could keep up with my healthy active companions, something I could not have done without this chemical effect. I was energetic and could keep up with them on a hike up to the very top of a mountain, something that normally was a monumental struggle with pain and fatigue. I felt like I did when I was active in sports, just a little winded but I could make that ascent like the other people I was with.
The difference between myself and the rest of this group was I was not experiencing the "tripping" type of mind set, I just felt "normal". It was just like being given my body back. I no longer was trapped by fatigue and pain. This effect lasted for about three days. Where the others felt nothing after the first day, I was full of energy.
There was another very interesting effect. I usually need 10 to 12 hours of sleep to function at any level but on this drug I only slept a normal eight hour night and woke up refreshed and renewed and proceeded to have another day of the same caliber.
I have had only five experiences with this drug but they all had an effect on me even after the 12 or so hours that it effected the other takers. I felt energized for about one to three days after taking it.
I don’t understand why it worked or how it worked but I know I felt a profound change from the extreme fatigue and inhibiting pain I suffer due to this disease. I said at the time I felt normal, and actually it felt more like a miracle. Each experience did prove the same. It had little effect on me psychologically, but on my physical energy and ability I felt like I’d been freed from a painful suit of armor.
My experiences impressed on me the idea that there can be something for me other than pain, fatigue. I want to find out if this effect can be recaptured and harnessed into working for me and others like me, making life less restricting and exhausting.
I am asking that someone may take an interest in my suffering and at least try to find out whether this may be a new and effective treatment for the fibromyalgia/CFIDS sufferers. I am willing to work with anyone who would like to take me on as a case for experimental testing.
Anyone is welcome to communicate with me further about my experience and my medical history. I hope that I may be considered a good case for further research and offer myself to any interested researcher.
Sincerely yours,
Jill
Editors Note: After receiving Jill’s letter, I contacted her physician to see if he was interested in trying to secure FDA permission to conduct research with Jill with MDMA. Fortunately, he was willing to go through the various time-consuming procedures that trying to secure FDA approval involves. I then contacted an official at the FDA to see if he would be willing to review an application to conduct research with Jill under what is called an N=1 methodology. Fortunately, the FDA is willing to entertain such an application.
The N=1 methodology involves a specific sort of research design in which Jill would be the one and only subject in the study. She would be given repeated administrations of MDMA or placebo in a double-blind methodology where neither she nor her physician would know which drug she was receiving at any specific time. After three or four administrations each of MDMA and placebo, her medical records would be reviewed to see when, if ever, she felt relief from her crippling symptoms. If she felt relief with the MDMA and not with the placebo, then further studies would try to explore what the MDMA did that was helpful to her. Depending on the results, a larger study with other similar patients might be undertaken. For now, Jill and her physician are preparing the application to the FDA for the N=1 study. At this time, I am hopeful that the study will be approved. Any progress will be reported in subsequent MAPS newsletters.