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My story: “Living death” with no end in sight is a terrible fate

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(Editor’s note: Mary Schweitzer has offered her testimony about living with CFS to the Department of Health and Human Services. This is what she said.)

In 1994 I was a successful tenured associate professor of history at Villanova University. I had an active research life; I have found a successful teaching niche at Villanova; I enjoyed my family life with a good husband and two wonderful children; we traveled, skiied, went to the beach – in short, at the age of 44, life was pretty good.

On October 24, 1994, I went up to my office at Villanova to grade essay exams. Hours later I “awoke” from what seemed to be a coma – I had no idea how long I had been sitting in the same position, seeming awake, yet not aware of my surroundings. I could not read one word of the bluebook in front of me. It took fifteen minutes of sheer willpower to be able to stand up and use the restroom – let alone to drive home (one hour from Villanova). I was diagnosed with CFS/M.E. – Chronic Fatigue Syndrome (which I later learned is called Myalgic Encephalomyelitis in the UK, Canada, and Australia). From that point on my life would never be the same.

Somehow I made it through the semester with the assistance of my family, my colleagues, and a lovely former graduate student who heard about my problems and showed up in my office, insisting on doing all my grading. I was formally diagnosed on December 26; my colleagues and chair arranged for me to have short-term disability for the next semester so I wouldn’t even have to worry about it. It was a confusing and frightening time.

Fortunately, I was already used to internet and email as an adjunct to my career, so I soon signed up for a discussion list and began to learn about my disease. I remember marveling that some posters were too exhausted to be able to get online every day – not knowing that in two years I would be in the same boat. An online friend recommended the excellent specialist who would be my physician through the worst of this disease, Dr. Marsha Wallace of Washington, DC (no longer in practice).

But despite her best efforts, and despite my good fortune at having a supportive and loving family and a comparatively stable financial situation, my health continued to deteriorate. By the fall of 1998 I could no longer walk – I could slowly shuffle, supporting myself on furniture or walls or with a cane, for a few feet at a time; otherwise, I needed a wheelchair. I had lost my ability to read even short newspaper articles; on a good day I could read short internet messages, but on bad days could no longer even sign on. Oddly, I found I could write fairly coherently (or at least, the readers told me it was coherent!) without necessarily understanding what I had just written.

The brain wiring was just not working. Driving was very difficult after my collapse, but I still got in the car for very small jaunts – by the end of 1995, after I found myself on top of a curb at the local post office with no memory whatsoever of how I got there, I handed my car keys over to my children (rather on their orders …) I could no longer cook for myself – the most I would do would be to get things out of the refrigerator or cabinet, and in the morning pour myself a cup of coffee. The latter task proved immensely difficult: if I did not chant to myself the order in which one puts together a coffee cup (saucer, napkin for spillage, cup, pour coffee in cup, put coffee pot back down in right place, open silverware drawer, get out spoon, etc. etc.). The results were amusingly disastrous; one time I poured the entire pot of coffee into the silverware drawer, wondering what was wrong with that picture (more often I forgot to get a cup and just poured it onto the saucer, watching it overflow onto the counter and the floor, understanding that it didn’t look quite right but not being able to figure out why …) It is easy to see why my family did not let me use the stove. I used the microwave from time to time, but that could be dangerous too: I set a bag of popcorn on fire in the microwave when I walked off and forgot about it.

Formally, in addition to sheer confusion, I had massive short-term memory loss; expressive aphasia; dyslexia, dysgraphia, and dyscalcula; central auditory processing (CAP) dysfunction; and my life-long ADD had gone off the charts. I lost my sense of balance – not because I was dizzy; it felt more that I had no sense of myself in space; that I was a poor judge of where the floor was, or my own legs and feet.

I learned that I had Neurally Mediated Hypotension (most certainly exacerbated by Ehlers-Danlos Syndrome, a hereditary connective tissue disorder that I recently learned runs in my family); I developed Hashimoto’s thyroiditis (a condition where your antibodies attack your own thyroid), fibromyalgia (FMS), myofascial pain syndrome (MFPS), and migraines.

Hereditary rheumatoid arthritis began to show up. When pain days were bad, all I could do was curl up into a ball on the bed upstairs, shades drawn, no lights; listening to movies I had seen so often I knew them by heart. I took florinef for the NMH; a lot of ibuprofin (later switched to Ultram) for the pain; cytomel for the hypothyroidism; zoloft for secondary depression (caused by my whole life suddenly taking a sharp turn downward); ritalin for the ADD and also the NMH; Klonopin for restless leg syndrome at night; and Doxepin to be able to fall asleep at night. Mostly, I was trying to get from one day to the next.

I do not know how I would have made it through that period had it not been for my family, our friends, the people I met on internet, my doctor Marsha Wallace, and the multiple kindnesses of strangers. From Wydee, the gentleman at Veterans’ Stadium in Philadelphia who would give me a hug at the end of each season and say he was praying for me to return in better shape the next year; to Edgar Johnson and the entire athletic department at the University of Delaware, who quietly made sure that my needs were accommodated so that at least I could watch sporting events with my husband; to my chair at Villanova, Dr. Don Kelley and my colleagues in the history department; husband Bob’s colleagues in finance and friends at the University of Delaware; my extended family; and above all my friends online – I do not know how we, as a family, would have survived. My heart goes out to everyone who has lost their social and financial support because of this dreadful illness; there are far too many out there.

But we were fortunate. On January 4, 1999, four years after my formal diagnosis with CFS, I was found to be positive for the defective low molecular weight RNase-L enzyme, which means that what I have called CFS/ME for four years is RNase-L Enzyme Dysfunction Disease, or R.E.D.D. To learn more about this serious immunological defect, go to the R.E.D.D. Information Center. This does not mean I no longer have CFS/ME — to the contrary, I believe that for many of us they are the same disease. Right now, the first step toward an R.E.D.D. diagnosis is a diagnosis of CFS/ME, and practically speaking, only the latter is available to the vast majority of patients.

On February 4, 1999, I began taking Ampligen®, the experimental drug to treat CFS/ME – in particular, those who test positive for R.E.D.D. It should also impact the active HHV-6 infection I was diagnosed with in November (I carry HHV-6 DNA in my lymphocytes).

I am on what is called a cost-recovery study (formally, the Ampligen 511). Ampligen has not yet passed Phase III testing with the FDA (although Phase III, double-blinded trials are currently under way; formally, these are called the Ampligen 516 trials), so the only way I can receive Ampligen is through a special dispensation from the FDA. Every 24 weeks we have to renew the application, but so far they have been kind in allowing me to continue. I have now been on the drug over a year, and do not know how long I will take it: there is no good way to tell whether I should stay on it or go off of it, and as long as the future is uncertain, it is hard for me to go off if I can continue to afford it.

I have been fortunate in experiencing no serious adverse effects (at first I was very sleep and ran a constant low-grade fever). The Ampligen 511 is costing my family roughly $40,000 a year out of pocket, but that has been worth it to regain a life. The drug itself, a synthetic double-stranded asymmetrical RNA, costs $15,000 for 48 weeks, but we also have had to pay for the infusion costs, doctor’s visits, testing — everything associated with receiving the drug. See my list of Ampligen links for access to further information about the drug; or you can click here to read my Ampligen Diaries. The Diaires include only the first six months (to August 4) – mostly because I got tired of uploading them!! — but I continue to improve and will remain on Ampligen as long as I can afford it.

As of March 15, 2000, I can be “normal” for several hours a day, but I still need afternoon naps and have problems with strength and stamina. I’m not at a level where I could teach full-time as a professor yet, but perhaps I will get there. At any rate, being able to walk, drive, read a book, write – these are all miracles. I don’t want everyone reading this to think Ampligen is the answer for you, specifically – but I do want you to know there is new information, new research, every day, and there are answers. Perhaps the most exciting part is that the damage to my brain was reversible!

Another new piece of information that I am trying to sort out is from the new book by Nicholas Regush, The Virus Within. At least 3/4 of that book concerns the virus, HHV-6, that appears to have been causing the most damage with my neurological system. In the fall of 1999 I was tested by Dr. Dhavram Ablashi, the co-discoverer of HHV-6. He found that my leukocytes were “riddled” with HHV-6a DNA. After six months on Ampligen, the HHV-6a DNA was completely gone, and so were the bulk of my neurological and cognitive symptoms. Dr. Ablashi and I believe these results to be extremely important for everyone who has HHV-6; however, he is only in the beginning stages with the research. [The 37kDa RnaseL had disappeared as well.] I am getting tested for the rogue RNA listed in Regush’s book, but I am not sure what will show up after a year on Ampligen. I will, of course, let everyone know! In the meantime, how can I doubt that HHV-6a is a serious piece to my own CFS/M.E. puzzle?

The book is not closed on my history with this disease. Although I have improved tremendously, I am still not “normal” by anybody’s standards. I am currently working on a book-length manuscript, titled “Living Death, Living Life,” about my experiences with this disease and what I have learned, so that I can share it with the outside world and with others who are living the same life I did. If I cannot answer private emails, it is because I am trying to have some semblance of a real life despite my continuing disabilities. In addition to the book, I have also begun to return to the history research that has been on my computer for five years, waiting for my return. So although I cannot yet work full-time for pay, I have a productive life again. Even without that – how can I explain what it is like to be able to walk again on a beach after believing it would never again be possible? I have been very lucky.

Too little is known about this disease. The CDC has refused to go public with its own current estimates (500,000 patients in the U.S. with the disease, half of whom will remain significantly disabled 10 years after onset; 90 percent have not been diagnosed) for reasons that continue to baffle me. The NIH continues to post outdated information on its website and in the pamphlets it distributes.

In the meantime, there is grossly insufficient funding – so the CFIDS Association of America gets by on a shoestring budget for a disease of this magnitude. If you can help financially, believe me – we need it!

If you have the disease, hang in there – help is on its way. If you know someone with the disease, take care of them. “Living death” with no end in sight is a terrible fate.

My best to everyone,

Mary M. Schweitzer

copyright © 2000 Mary Schweitzer, Ph.D.

Used with permission of the author.

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