Chronic Fatigue Syndrome (ME/CFS) Prognosis and Treatment Success Rate by Cort
Johnson
Prognosis. Most epidemiological studies report that many ME/CFS patients feel better over time but that full recovery is rare and that a subset of ME/CFS patients regress or remain severely ill. These studies do not, of course, take into account the improved improvement/recovery rates presumably found in those under an ME/CFS physicians care.
Treatment Success Rate. One encouraging sign is the consistent improvement rates ME/CFS physicians report they see in their patients. Dr. Lapp, Dr. Teitelbaum, Dr. Holtorf and Dr. De Meirlier have all stated that 80% or more of their patients see significant improvement over time. Dr. Lapp reports that even ‘simple supportive care’ can yield real benefits.
What constitutes ‘significant improvement’ is unclear, however. For the very severely ill person is it going from being bedridden to upright a few hours a day? For someone better off is it from walking 10 minutes a day to 30 or 45 minutes a day? The bottom line is that while ME/CFS patients want to get better what they really want is to be well. Can experienced ME/CFS physicians promise them this?
According to Dr. Teitelbaum in some cases yes, they can. Dr. Teitelbaum believes that while there is much more to learn that ‘we have crossed a threshold’ in learning how to treat ME/CFS and that this illness can be effectively treated. Remarkably he states that symptoms are no longer ‘a major problem’ for more than fifty percent of his patients. These people are presumably –carefully - leading close to normal lives. Thirty-five to forty percent of his patients experience significant improvement and his methods do not work on 10-15% of his patients.
A Severely Ill Subset This is encouraging news yet it still leaves approximately 50% of ME/Chronic Fatigue Syndrome patients significantly hampered by this illness and a small but significant subset for whom treatments offer little help. After speaking with several prominent ME/CFS physicians Marcia Harmon of the CFIDS Association reported that :
“It would be wrong to conclude that if patients just work hard enough to find the right combination of all the treatment strategies…. then they’ll get better, or at least substantially improve. The bitter, unpalatable reality is that CFS patients can be proactive, they can have a good attitude, they can try various drug and nondrug interventions, and they can still remain ill, even profoundly disabled.”
Indeed several physicians (Dr. Teitelbaum, Dr. De Meirleir) report that a subset of ME/CFS patients (@10-20%) do not report significant improvement no matter what treatments they throw at them.
Relapse. While many ME/CFS patients appear to improve over time the danger of relapse is real even in those whose health has improved. Several prominent ME/CFS figures (Dorothy Walls, Tom Hennessey) have suffered horrific downturns in their health after periods in which they described themselves as pushing too hard. (See Interview With Dorothy Walls).
____________________________
Teitelbaum, 2007. From Fatigued to Fantastic, 3rd Ed. Avery Press