A Different View – DM’s Chronic Fatigue Syndrome (ME/CFS) Family Story
(DM’s family is an unusual one, not only does he have the disease but so do his father and mother and sister. DM’s willingness to have his family history portrayed here derives from what he believes is an unfortunate perception that's become embedded in CFS culture – that CFS often has devastating physical consequences but not emotional ones. DM’s family, with their diagnosis by a prominent physician and their well documented immune abnormalities, demonstrate how many different facets - emotional and physical - ME/CFS can have.)
A review of My family cluster -- the personal reason I view CFS differently than most CFS patients.My Father My dad experienced subtle NMH/OI symptoms by college age. His immune system began to become dysregulated after exposure to the Hong Kong Flu in the early '60s. In the late '60s he developed full-blown MCS requiring drastic lifestyle changes, and onset of celiac disease and multiple food allergies by the '70s. He was able to maintain successful employment as an administrative and clinical psychiatrist during this period but was not able to pursue his ambitions of becoming a major researcher and scientific innovator at NIMH.
In 1996 a spinal fluid analysis revealed encephaitis due to chlamydia pneumoniae and he was put on a complex antibiotic regime, which resulted in dramatic cognitive improvement and sustained part-time work. I
In 1980 he was struck with acute EBV mono, in his late 40s, and developed progressively worsening CFS associated with EBV recurrences (by PCR and early antigen), gradually having to cut back hours in private practice. He first saw Dr. Peterson in 1989 who documented his immune & exercise defects, i.e. low CD4 count and disturbed CD4/CD8 ratio, active EBV, and treated him with gamma globulin. When the first Gulf War began, gamma globulin was taken off the market, and my dad began a worsening course, developing progressive IQ loss and weakness, and was mostly disabled by 1995.In 1996 a spinal fluid analysis revealed encephaitis due to chlamydia pneumoniae and he was put on a complex antibiotic regime, which resulted in dramatic cognitive improvement and sustained part-time work. In 1998 he was diagnosed with LMW Rnase-L by Redlabs Belgium, and from 1999 to 2001 was treated with Ampligen, followed by Ampligen+doxycycline, with modest further improvements and elimination of active EBV from then on; food intolerances and leaky gut continued to worsen. He remains partially disabled at the present. He has NEVER shown HHV-6 active infection, only EBV and c. pneumoniae. His NK cell function has always been low-normal to normal.
My Mother My mom, who is 15 yrs younger than my dad, was apparently physically healthy and productive before meeting my dad, though she had a history of brief depressive episodes and chronic insomnia in young adulthood. After my dad was struck with mono and recurring EBV, she was tested and also showed lab evidence of recurring EBV in the '80s. She did not, however, develop CFS or Fibro symptoms. Rather, she developed treatment-refractory major depression, recurring sinus infections, withdrew completely from work (formerly a masters-level teacher, also earned a degree in P.R.) and began abusing alcohol and sedatives (after both I and my sister were born).
In the early '90s she experienced some kind of lower back injury which triggered the onset of severe primary fibromyalgia syndrome, which was eventually partially relieved by narcotics.
In the early '90s she experienced some kind of lower back injury which triggered the onset of severe primary fibromyalgia syndrome, which was eventually partially relieved by narcotics. She did not have severe fatigue, OI, or exercise intolerance at this time. Her major depressive episodes gradually became longer and deeper. By the late '90s she began to have memory loss and developed strange neurological sensations, such as the feeling of bugs crawling under her arms that didn't fit with the clinical picture of depression and required more narcotics for less pain relief.Dr. Peterson, at his own expense, sent a research nurse to Vegas to test her, and found that she had laboratory evidence consistent with ME/CFS including immune defects including an NK cell function of 0% and the Rnase-L defect and evidence of reactivated EBV and c. pneumoniae. At this time she was still able to tolerate aerobic exercise and her only symptom was severe depression. She denied the tentative ME/CFS diagnosis and refused to see him or consider the recommended treatment (Ampligen), because she believed the drug had not helped my dad enough to be worth the cost and effort, and because she wasn't tired.
The antiviral appeared to improve her terrible crawling skin sensations, allowing her to gradually withdraw from narcotics, but did little to improve her overall function.
Her status remained the same through 2004, but in the summer of that year she took a turn for the worse physically, dramatically losing the ability to exercise and maintain upright posture. Her skin crawling sensations and depression were unrelenting. She finally saw Dr. Peterson, who diagnosed HHV-6B infection. He recommended that she move to Salt Lake and get Ampligen, but she felt unable to do anything so drastic, so he put her on IV cidofovir, first for 3 months and then 6 months when the virus quickly recurred. The antiviral appeared to improve her terrible crawling skin sensations, allowing her to gradually withdraw from narcotics, but did little to improve her overall function.Over time her fatigue has gotten somewhat better but she has remained very disabled largely due to major depression. She has not since responded well to any treatments, and the opportunity to get Ampligen is no longer available to her. My dad, who had tried every psychotropic med known to man on her, recently flew her to Canada to get magnetic stimulation therapy for depression. It appears to have helped, subjectively anyway. She is not bedridden and is more coherent in conversation but is housebound with very poor quality of life.
My Sister My sister, apparently healthy and active as a child, developed sudden-onset CFS at the age of 14 following documented and promptly treated strep-throat infection. She had severe POTS (postural tachycardia syndrome - difficulty standing), headaches, sleep problems, exercise intolerance and was bedridden for 2 years, completing high-school at home study. She had evidence of elevated total RNase-L but NOT the 37-kd form. She did not have evidence of active HHV-6, EBV, or c. pneumoniae, only evidence of prior exposure to all 3. She spontaneously recovered from CFS and POTS by age 17, having mild tiredness as the only residual physical symptom.
She had severe ... difficulty standing, headaches, sleep problems, exercise intolerance and was bedridden for 2 years, completing high-school at home study.
But, her tale is not happy. Her personality dramatically changed when she fell ill. Formerly an extrovert, she rejected all her friends (who were supportive) after getting sick, and completely withdrew from the outside world. By the time she recovered from CFS, she had developed a severe personality disorder (I would say avoidant with borderline features), body dysmorphobia, and recurring episodes of severe depression and anger.
Her belief system is odd and distorted. She has consistently refused offers
of psychiatric help or therapy/counseling. She still has no significant social
contacts outside the home at age 22, but she is showing signs of developing more
positive beliefs about the world and may go away to finish college soon, at a
secluded all-girls school in rural PA. (I asked Dr. Peterson about her situation
and he said personality disorders were a common, but not typical, outcome in adolescent CFS, and that this group of
patients typically does poorly).
Her personality dramatically changed when she fell ill. Formerly an extrovert, she rejected all her friends (who were supportive) after getting sick, and completely withdrew from the outside world.
When a person with mild ME/CFS paces themselves appropriately, they may stop being aware of fatigue. My sister, for instance, who was bedridden by ME/CFS acutely at age 14, substantially improved over time and no longer complains of either fatigue or pain. However, she does have serious depressive symptoms and a quite restricted activity level. This fall, she attempted a full time college load and developed severe fatigue within 5 weeks of attempting a normal activity level. For the past 4 years, she had denied having 'CFS' and blamed her reduced activity on emotional issues such as severe depression, obsessions, and phobias. But AS SOON AS she overcame the emotional problems and tried to live a normal lifestyle, --boom, the exhaustion comes back.Myself Now myself, born in 1983, I was apparently healthy and developed normally as a baby. From ages 3-4 I developed a long series of recurring, painful, and treatment refractory ear infections. I showed evidence of prior EBV exposure, low white cell count, and elevated monocytes. After these resolved there were a series of dramatic and negative changes in my behavior. I became extremely uncoordinated, sullen, withdrawn, emotionally flat, and uninterested in playing with other children.
From ages 3-4 I developed a long series of recurring, painful.. ear infections... After these resolved there were a series of dramatic and negative changes in my behavior. I became extremely uncoordinated, sullen, withdrawn...
In early elementary school I got into a lot of trouble due to tantrums and made no friends, and was given a variety of psychiatric diagnoses including developmental coordination disorder, ADHD, childhood major depressive episode, childhood avoidant disorder. Neuropsych testing showed a scattered pattern of cognitive deficits and cognitive strengths. I was treated with the tricyclic antidepressant desipramine which greatly improved my mood and attention, but I continued to suffer from a profound lack of coordination and poor social skills. I was never able to play sports as a child, and remember basically living in a fantasy world, but being 'happy' most of the time. I was able to be somewhat active through regular hiking and walking.In 4th grade I was having more behavior problems than usual and got some medical testing; it was found I had active EBV infection, a low white cell count and neutrophils, and elevated monocytes. I had no noticeable fatigue or physical symptoms at this time. Did not feel ill or unhappy, just had uncontrollable anger outbursts that made other people miserable. I had a few friends by 5th grade. In junior high I gradually grew out of my problems with coordination and developed my first close, meaningful friendships.
By high school I was a mostly normal, active teenager. I was happy and had a good network of friends. My social skills and coordination were still a bit below average but my massive intellectual development more than compensated. I earned straight A's in AP/honors curriculum, read lots of books for fun, and scored a 1480 on my SAT's. I felt healthy during this period, except for getting recurrent episodes of bronchitis. Looking back I believe I did though have more difficulty tolerating stress, particularly sleep deprivation, than other teens, I got sick more often and took longer to recover, I reached a plateau quickly with aerobic exercise performance, and I had subtle OI symptoms under stress. I remember friends poking fun at me for having to rest my head between my legs when we had stayed up really late.
I continued this level of health until my sophomore year in college when I developed cognitive difficulties and frank OI symptoms.
I had a gradual onset. My initial symptoms were cognitive dysfunction (especially difficulty reading due to an inability to visually process quickly), mild physical fatigue, emotional blunting or a feeling of disconnection. These were the only symptoms in the first six months (spring-summer 2001). At this point I felt bad but did not believe I had the severe disabling illness that my dad and sister had ... without doing any blood test I basically diagnosed myself with depression and ADD, got the university psych docs to agree, and I started on 20mg Prozac/day and 5mg Ritalin twice/day.
I was feeling and thinking better within a month of beginning this regimen (which also happened to be summer break when I was inactive). I returned to school in the fall feeling very optimistic, and began to take on more activities, such as a part-time job. During this period I began to develop new symptoms -- pronounced dizziness and fatigue when standing for >20 minutes, dizziness after exercise, and hypersomnia. The cognitive and emotional symptoms I had before came back. Raising the dose of either medication I was on made me worse instead of better.
I developed decidedly 'physical' symptoms, such as a constant flu-like malaise and OI symptoms that occurred in the sitting position. From then on I became known as the kid-who-always-has-his head-on-the-desk.
At this point I still thought I was depressed/unmotivated and forced myself to begin an aerobic exercise program -- 30 minutes running on a treadmill, three times a week, plus weight lifting. The effect of this program was that I felt better and improved my exercise performance in the first 4 weeks, but my performance plateaued then declined afterwards. I suffered a prolonged bout of bronchitis that fall that took me 6 weeks to resolve (the following year this would recur and NOT resolve and be falsely diagnosed as allergic asthma; eventually it was diagnosed as c. pneumoniae infection and cured by prolonged course of zithromax/ doxycycline)I continued this exercise/med regimen into the spring. In February of 2003 I developed decidedly 'physical' symptoms,such as a constant flu-like malaise and OI symptoms that occurred in the sitting position. From then on I became known as the kid-who-always-has-his-head-on-the-desk. My cognitive problems with reading and memory got worse and I knew there was something wrong with me other than depression. I had to drop one class due to fatigue.
When I came home for spring break, my dad ordered a series of lab tests -- my Rnase-L, 2-5A synthetase, came back elevated and my WBC and neutrophils came back low. I saw Dr. Peterson for the first time in May 2003 and got an official diagnosis of neuro-immune fatigue in July. He told me that my immune system was
I WANTED desperately to have a mental disorder, something I could treat, something I could fight by thinking and behaving rightly. I didn't want to have the illness that had left my sister bedridden throughout high school...
revved up and I should stop the purposeful exercise, which I did. In April I stopped the prozac, and stopped the ritalin by the end of the semester. The next time I tried these meds I couldn't tolerate them at all.This is why I hate the CBT school of thought regarding CFS -- the whole model rests on the assumption that patients are overcommitted to attributing their symptoms to a physical cause rather than being psychological. I was just the opposite -- I WANTED desperately to have a mental disorder, something I could treat, something I could fight by thinking and behaving rightly. I didn't want to have the illness that had left my sister bedridden throughout high school, an illness with no known treatment except a dubious $20,000/year drug called Ampligen.
If you have neuro-immune fatigue, your beliefs about what you have are completely irrelevant. Unlike pure CNS sensitivity syndromes, with this illness exercise makes you worse over very long periods of time, i.e. weeks to months. Even now I still am unable to notice a worsening after an activity increase for at least 4-5 days. Exercise SEEMS to make me feel better ... at first, but in reality my VO2 max is half that of a normal man my age, and my body breaks down if I continue to be active for more than a week.
I saw Dr. Peterson for the first time in summer '03, who documented an NK cell function of 6%, leaky gut, elevated Rnase-L, low WBC and neutrophils. I had a low-normal VO2 max of 42ml/kg/min on exercise test. Naturally, I ignored his advice about pacing and continued to exercise vigorously and took a full course load in the fall. The consequence was that I was only able to take 2 classes by
Naturally, I ignored his advice about pacing and continued to exercise vigorously and took a full course load in the fall. The consequence was that I was only able to take 2 classes by the spring and was nearly bedridden by summer '04
the spring and was nearly bedridden by summer '04, meeting all the Canadian CFS criteria at this time except pain. My recurrent bronchitis had become permanent. My VO2 max fell to 23.8 despite daily bike riding and walking. I experienced severe episodes of depersonalization, sensory storms and paresthesias.I was eventually dx'ed with c. pneumoniae infection, treated with long-term antibiotics, and improved dramatically but eventually began to worsen again. My Rnase-L defect improved then came back, and low NK cell function remained constant, the c. pneumoniae recurred when antibiotics were stopped, and I showed evidence of active HHV-6A infection by PCR, culture, antigenemia by late 2005. I have since remained partially disabled, limped through the rest of my Bachelor's at ASU, and been treated with 3 months cidofovir and, now, nearly 3 months Ampligen.
November, 2007.