Prognosis and Treatment Success Rates

Prognosis

Most studies and several doctors report that many people with chronic fatigue syndrome (ME/CFS)  feel better over time but that full recovery is rare and that a subset of  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 experienced ME/CFS physicians care.

Treatment Success Rate

One encouraging sign is the consistent improvement rates experienced 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. Dr. Pocinki reports that 15% of his patients recover fully. Several studies and several doctors statements suggest recovery rates are higher in the young people than in adults.

Rather remarkably, Dr. Teitelbaum 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  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.  One group of poorly delineated patients experience huge swings of health; feeling almost well -sometimes for years – only to relapse later on.  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.


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Teitelbaum, 2007. From Fatigued to Fantastic, 3rd Ed. Avery Press

 

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Annonyma December 4, 2012 at 5:05 pm

I was running a tiny life when my father suddenly died. Taking on his estate, my mother’s care for Alzheimer’s, and having to break my apartment and move into their house is the sort of terrible, unplanned, unexpected life event that can bring a person to the brink. The deterioration of my condition, once challenged with situations that would not respond to my need for rest and minimized stress, has taken an unsatifactory life and turn it into a nightmare of symptom exacerbation with no relief or improvement in sight.

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Deborah Waroff September 12, 2013 at 5:18 am

I’d like to see some follow up studies done so the methods employed and progress made for these patient successes are documented. Obviously at this point a Lenny Jason type study would be most appropriate — one can’t do a prospective controlled study after the fact. Doctors and patients need to have better access to this sort of information. Given that even rigorous scientific studies on MECFS were suppressed under Steve Schwartz and Bill Reeves, and that the hills are alive with ad hoc experiments that never reach publication, there is need for a vast information gathering on therapies.

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