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?
Chronic Fatigue Syndrome (ME/CFS): the Basics
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.
Dig Deeper! See Interview With Dorothy Walls.
Dig Deeper! Check out the Phoenix Rising Forums
What's Needed. The poor outcomes many patients face and the trivial amount of
research being done on the disease suggests that one thing that's vitally needed is better and more
effective advocacy. To find out what you can do
click here
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Teitelbaum, 2007. From Fatigued to Fantastic, 3rd Ed. Avery Press