The Need for Diagnostic Criteria for before "The Crash"
Appendix B to the
Statement by Mary McKinney Schweitzer, Ph.D.
Presented to the second meeting of the
Chronic Fatigue Syndrome Coordinating Committee (CFSCC)
October 22, 1997
For Members of WECAN
(The Worldwide Electronic CFIDS/ME Action Network)
WECAN existed from 1996-1999
My own case (Mary Schweitzer): Prior to my collapse in October 1994, I experienced increasing loss of balance, total alcohol intolerance, blurred vision and a deteriorating handwriting. I used to work out regularly; 30 minutes aerobic activity 5-6 days a week; the Nautilus circuit 2-3 days a week. But my workouts became inexplicably more and more difficult. My heart rate would not remain between 100 and 180 bpm; neither my trainer nor I could find a workout level that would keep it between those two points. I began having recurring cases of bronchitis and sinusitis; for a period of 4 years I spent at least 8 months out of the year suffering from one or the other. My gp knew all of this, but could not figure out how they could be connected. I believe that if we studied chronic fatigue syndrome before the "six months of debilitating fatigue", we might be able to prevent the total collapse that occurs to so many of us.
"Sara", on slow onset:
I believe I developed the illness over a period of 20 years or so. My stamina has always been poor. My physical condition, otherwise, displayed no unusual dysfunction until after a cluster of years of emotional tremendous stress and hard work, I began to experience sporadic "wipeouts" and hurting all over. I'd take to the bed for a day and then I'd be fine. Eventually, I came down with shingles. Subsequent illnesses followed over the next few years but were "cured". Then came the big whammy!! One day I couldn't get up and we all know the rest of that scenario.
Is this a description or a pattern that most slow onset people experience?
When I have to see doctors for workers comp. Who are not CFS specialists, they inevitably point out that I was able to work for almost three years after the first symptoms began. These doctors take their CFS info directly from the CDC case definition (they like using the old 1988 version and embellish a little in regard to the concurrence of CFS and depression).
My first symptoms began when I was taking strong medication to counteract a TB infection (the PPD was 29x30 mm which is very large). The first symptoms were numbness in the extremities, nausea, short-term memory problems, weightloss, and fatigue--but not so bad that I couldn't continue my work as a teacher. The fatigue gradually increased and after I finished my meds, the recurring upper respiratory infections and other symptoms showed up. My doctor thinks the medication set off CFS. I wonder if the severe infection coupled with the med caused the onset.
I knew something was very wrong when I was not able to work out for 1-2 hours every day. I had kept that rate of exercise for 4 years and within 6 months I went to to point that warming up was too much and I would leave the Karate class crying. I am a black belt that was nationally rated and enjoyed teaching and competing. I have put the trophies and photos away.
At work I was writing technical reports and books. I got to the point that I would arrive early so I could rest in the parking lot from the 17 mile drive. Then I would rest en route to my office as I was so tired. I was three days from being terminated when I went out on disability.
I searched for 4 years for what was wrong. I worked under horrible pressure and pain. I was branded fat, dumb and lazy. Having gained 100+ was not helping. I went to every doctor that would listen. Nothing was found except thyroid and that was easily controlled. 6 months before I went out I found a doctor 150 miles from my home that could diagnose me. I was so happy!! Know what you got...you will know how to get better. The roller coaster of the disease is enough to make anyone want to throw in the towel. Good news...you won't die. Bad news...you won't die.
The local doctor I finally settled on for care on other and emergency areas is just as in the dark as the others except that he admits it. I am going to a teaching doctor so he send the local one summaries.
I was finally diagnosed with FMS and CFS in July 1995. At that point, I had been experiencing crushing exhaustion for more than a year, though a complete physical in November 1994 showed no clinical abnormalities other than a puzzling high cholesterol (which I know now to be a result of subclinical hypothyroidism, untreated until after surgery to remove a thyroid tumor in April 1997). The exhaustion was a relatively new symptom, and the one that put me over the top in terms of my ability to cope. I am a visual artist, writer and teacher accustomed to supplementing sometimes meager earnings with part-time secretarial work. In February 1995, despite the fatigue (which I was encouraged to believe was psychogenic and for which SRIs were prescribed), I attempted to work 20 hours per week at an administrative assistant job. After three months, I was fired because I could not reliably come to work.
I had had unexplained and unresponsive pain, to varying degrees of severity, since I was a little girl (when the doctor called it "growing pains"). For about ten years my internist in St. Louis, who I now realize was a pretty smart guy, after having much experience with docs who in no terms could be described similarly, diagnosed and treated me for "rheumatism." I was diagnosed with IBS when I was 18 and told it was psychogenic.
I believe I have a fairly typical FMS history of muscle pain and IBS that was, previous to 1990, somewhat manageable, though I was negatively affected by changing weather and any unusual stress, physical or emotional. In 1988-89 I went through a very difficult divorce, then moved to Minneapolis in 1990. In March of 1990, I developed TMJ so badly that I was in constant pain, could not chew or even open my mouth very far. This was successfully treated with exercises, drugs and a mouth splint, which I still wear to bed. In late 1990, I began having repetitive stress injuries to my arms, which I attributed to unusual work that I was doing in my art at that time. I was given numerous evaluative tests, including an MRI and neuro exam, and prescribed physical therapy, which was not helpful. Chiropractic treatment finally offered some relief, so that I was again able to use my arms for usual activities without extreme pain. Summer of 1991, I had two major surgeries within seven weeks. The first was for a cecal volvulus, the second for blockage of the small bowel resulting from the first surgery. I seemed to have recovered from these without any significant problems, though I developed an even greater sensitivity to foods and drugs than I was accustomed to having.
I remained quite active, both physically and mentally, though I was never completely pain free, until Spring of 1994. Following a trip to Northern California where I taught a series of workshops, I began feeling the pain, fatigue and confusion that is never far away now. Though that time could be considered stressful--lots of travel, lots of new situations and people, lots of responsibility--in fact I tend to enjoy (or at any rate, I USED to enjoy) just that kind of stress. I had a severe sore throat while I was there, bad enough so that I went to the doctor, was told it was viral and that nothing could be done for it except wait, gargle with salt water, etc. I believe that was my first noticeable experience with the CFS sore throat. I came home tired, expected to get over it, but never did. I began the process of applying for disability in October 1995, which I finally received in March 1997.
I was working as a finance manager at AT&T. I had back to back sinus infections for a period of about 7 months (after getting a flu shot at work). The antibiotics just would never work. Then, while walking at lunchtime at work I noticed I could not get out of bed the next day, my muscles ached, especially if it rained. I was dragging myself into work every day but, having a really difficult time getting up in the morning. I got to work later and later each day. I had a difficult time remembering vocal instructions. I would go into my boss's office in the morning for daily instructions and go back to my desk and could not remember what he said or how to do what he said. I felt like I was stupid and dumb and losing my mind. This was stuff I knew how to do and I couldn't remember how to do it! I kept telling my dr. that my main symptoms were a headache, a sore throat, muscle aches and complete exhaustion and she kept saying my system was down and I was depressed. I found out about CFS and FMS and went to her and asked if it could be something like that. She didn't think so.
I called the CFIDS Assoc and got a list of drs who treat CFS and went to one of them. This dr. examined me for 2 hrs. and wrote to my dr. saying that I was a classic case of CFS. My insurance then changed to an HMO and I needed a referral from my dr. to see the CFS specialist and rheumatologist. My dr. refused, saying there was no such thing as CFS, that these drs. were leading me down the wrong path. She said I was spiraling down, system was down, causing me to be depressed, causing my system to get down some more. A vicious circle. She prescribed Serzone (anti-depressant). She prescribed Pondimin (part of Phen-fen) saying that I was unhappy about being overweight.(?) She said she was my friend and wanted me to get it together before I completely broke down and lost my job and my husband divorced me (?) I left her office in tears and have never gone back.
My immune problems probably began with the first of three pneumonias in '85. My GP diagnosed CEBV.
I went on with my life (Supervisor, 500-bed hospital, and then Nurse Manager, MICU (13 beds) until a MVA in '89.
In '91 (after 3 GI bleeds secondary to excessive NSAIDS), I finally found a doctor who diagnosed FMS and began treating me for same.
Cognitive dysfunction, loss of fine motor skills, etc, gradually ensued, causing me to be demoted to staff nurse in the Alcohol Rehab Ward (the least labor-intensive site I could find). I lasted there 4 years.
I was having so much trouble, comments were openly made that it was not believable that I'd formerly held such positions as Head Nurse and Supervisor.
Throughout it all, based on my medical records, my doctor felt that the entire problem was depression and that my FMS was being successfully treated.
I also failed at Home Health IV Infusion because I eventually couldn't handle the endurance aspects as well as the motor skills necessary.
By last September, I literally crawled on all fours up my stairs, couldn't keep myself clean, hadn't cleaned my house in months, lived on TV dinners (I had been a trained Chinese cook), was in financial ruin, had lost a marriage (not necessarily a bad thing) and was completely alone and seemingly helpless.
I finally changed doctors as a last ditch alternative to suicide. What my former doctor missed: severe IgG subclass 2 deficiency that may have been successfully treated had it been found earlier, the cognitive impairments, nutritional deficiencies that responded to supplements, the migraines, and most other symptoms associated with FMS and CFIDS.
Whatever concurrent depression that I now have would be gone in a flash if I were able to regain my former abilities.
For about two years prior to onset, I noticed that I was sleeping less and less at night. From a solid 8 hours, it crept down to 7, then 6, then 5. During this time I also experienced swollen glands in my armpits and neck, which were dismissed by my physician. So, too were the rapid hair loss and fevers and chills, resulting my my getting odd looks as I dressed for winter in the middle of a Los Angeles summer. I still worked and went to school, but found myself unable to stay awake during the afternoons, even doing things that previously challenged and invigorated me. I reduced the hours worked, but still the problems continued. The hours I slept started creeping up again, to 6, then 7, then 8, then 10, then 12, then 15, but still I awoke feeling like I'd been beaten with a baseball bat (good days), run over by a Mac truck (medium days), or completely steamrollered (bad days). The internist found nothing wrong. The allergist found I was allergic to everything they tested me for, but thought that my problems were due to more than just allergies. The endocrinologist said my internist had me on overdose levels of Synthroid, but once that was balanced out and I still had the fevers, chills, swollen glands and sleep problems, said that he didn't understand it so sent me to an infectious diseases doctor. She said that it wasn't anything she could figure out, despite some odd blood chemistry values. She dismissed the allergists' thought that it might be something like EBV or CMV. It wasn't until I spoke with a family friend, a man known in his field as one of top psychoneuroimmunologists, that I got a lead on what I had: CFIDS, and a referral to one of the top clinicians in the country. Imagine my relief when, instead of having yet another doctor shrug and say "Well, aside from your sleep problems which aren't resolved by normal sleep hygiene practices and drugs, and your swollen glands, fevers, chills, unexplained weight gain, loss of stamina and inability to stay awake more than a few hours at a time, you're healthy as a horse" but instead say: "This is what you have, this is what we know about it, and these are the things we can try to ease your symptoms and try to restore you to a higher level of functioning. (This took slightly over two years from the initial symptoms, and a year from the time I started aggressively seeking answers to what was wrong.)
Imagine, too, my relief when my feelings of getting increasingly more stupid were confirmed when I underwent neurocognitive testing and found that, indeed, my IQ had dropped nearly 40 points! Knowing that I really am ill, and that my brain really has undergone significant changes, makes being able to sleep only 1.5-2 hours a night (3-4 if I take Ambien or melatonin) almost bearable...
Symptoms before diagnosis:
numbness in extremities, recurring upper respiratory infections, short-term memory lapses, unexplained weightloss, bouts of unexplained nausea, bowel problems, onset of food sensitivities and allergies, and significant--but not yet debilitating--fatigue.
Return to Text, CFSCC Testimony October 22, 1997
Go to Appendix A: How Bad is Bad?
Go to Appendix C: Disability Struggles
Go to Appendix D: Three PWCs
Go to the CFIDS/M.E. Information Page
Mary Schweitzer's Essays on CFIDS/M.E.
Mary Schweitzer's Testimony to CFSAC and CFSCC