Chronic Fatigue Syndrome, Fibromyalgia, and Myalgic Encephalomyelitis: A Clinical Perspective
Jacob Teitelbaum, MD, is director of the Fatigue and Fibromyalgia Practitioners Network and lead author of 4 studies on effective treatment for fibromyalgia and chronic fatigue syndrome, and a study on effective treatment of autism using Nambudripad allergy elimination techniques. His book credits include From Fatigued to Fantastic!, Pain Free 1-2-3: A Proven Program for Eliminating Chronic Pain Now, the Beat Sugar Addiction NOW! series, Real Cause, Real Cure, The Fatigue and Fibromyalgia Solution, and a free iPhone and Android application ?Cures A-Z.? He currently resides in Kona, Hawaii and maintains the Web site: http://www.EndFatigue.com. (Altern Ther Health Med. 2014;20(1):45-46.)
I applaud Dr Brown?s excellent overview of chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME). We find that most people with CFS/ME also have fibromyalgia syndrome (FMS) and that the principles discussed in his article and below apply to all of these conditions.
As he notes, these syndromes are not the same in everyone and do not lend themselves to a one-size-fits-all solution. Rather, these syndromes represent a severe energy crisis where the person has essentially blown a fuse called the hypothalamus. By restoring energy production and getting rid of problems that increase energy consumption, hypothalamic function can be restored, and the CFS, FMS, and ME usually improve?and will sometimes resolve. This has been demonstrated in our published placebo-controlled research,1 which showed that by treating with what we call the SHINE Protocol, 91% of people improved with an average 90% increase in quality of life.
Using the acronym SHINE can be very helpful clinically to organize the diverse treatments that are available. SHINE stands for (1) sleep, (2) hormonal support (despite normal lab tests), (3) infections, (4) nutritional support and detox, and (5) exercise as able.
Beginning the discussion with the confusion and problems created by our splitting of mind and body in Western medicine is especially apropos in these conditions, as this split has resulted in major trauma for people with CFS/FMS/ME. This has been seen in the past where illnesses without a clear diagnostic test have been treated as being psychological, with physicians implying to the person and their family that ?I don?t know what?s wrong with you, so you are crazy!? This was seen in multiple sclerosis, which used to be called hysterical paralysis, rheumatoid arthritis, and lupus, where as soon as accepted testing became available, millions of women went from being neurotic to suddenly having a real illness. This is now what is also occurring in CFS/FMS/ME.
To better understand the conflict about cognitive behavioral therapy (CBT) and graded exercise training (GET), it is helpful to look at cancer-related fatigue in comparison. Both of these treatment modalities are very helpful for cancer-related fatigue, and in fact exercise is the only proven treatment for cancer-related fatigue. No one would argue about their benefits, and just as important, no one would claim that cancer is a mental disorder, and that people with cancer should be denied health or disability benefits or other treatments, simply because the CBT/GET helps. Yet some well-meaning but very misguided people do just that in CFS/FMS/ME, lobbying that only CBT/GET should be allowed and/or financially covered for CFS/FMS/ME treatment. As part of their CBT therapy, some therapists even pressure the person to accept that their CFS/FMS/ME is not a real physical illness! This is where the problems begin surrounding CBT/GET.
These areas lend themselves to a common sense approach. When is counseling recommended for somebody with CFS/FMS/ME? As with any other illness, CBT is recommended when the patient feels that it would be helpful to have counseling to assist with coping skills. As for recommending exercise, again, common sense applies. People with these conditions have what is called postexertional fatigue, which can leave them bedridden for a day or two after excessive exercise. Because of fear of exercise, they also can have severe deconditioning, which will aggravate their illness. Let the person know that they only have enough energy to condition to a certain point, so they should begin a walking program at a level that feels comfortable and leaves them feeling good tired afterward and better the next day. If they feel wiped out the next day, cut back by 20% to a comfortable level. Let them know that once they have been on the treatments discussed in the article or treatment with the SHINE protocol for 3 months, their energy production will increase and they will be able to condition further. For now, a low-cost pedometer can be an excellent biofeedback tool. Have the person aim to increase their walking by about 50 steps per day as able. All this can be summarized in the 3 words that make up the E of the SHINE Protocol: Exercise as able!
So how do you tell if the person is also depressed? Just as in any other severe illness?ask them! Simply asking people if they were depressed was as reliable as more complex scoring inventories, with good sensitivity and specificity.2 In our study, 1 out of 8 people with CFS/FMS had an associated depression,3 a level on par with other severe illnesses.
The author gives an excellent overview of the research on nutrition in CFS/FMS/ME. The problem is that the Western diet now has almost half of its nutrition in the form of empty calories largely stripped of micronutrients. This occurs because about 18% of our calories come from white flour and another 18% from sugar; in addition, we lose additional nutrients in food processesing and cooking. Because of this, we are not seeing just a single nutrient deficiency and would not expect dramatic effects from replacing one missing nutrient. Instead, I recommend a vitamin powder that simply supplies all the missing vitamins, minerals, and amino acids in a single drink?rather than having people take handfuls of pills each day.
Nutrient deficiencies that occur not from dietary losses but rather from increased utilization and decreased production by the body are a different issue, and these need separate supplementation. In addition to adding acetyl-L-carnitine as discussed in the review, it is also helpful to add 200 mg coenzyme Q10 per day, plus 5 g ribose (3?/d for 2 wk and 2?/d thereafter). The ribose supplementation is associated with an average 61% increase in energy after 3 weeks.4
Beyond these nutritional recommendations, clinical experience suggests that, overall, people with CFS/FMS/ME, do best with a high-protein diet that is high in water and salt (salt restriction is not recommended in people with hypothalamic pituitary adrenal axis dysfunction, which is common in CFS) and in which people avoid sugar. As Dr Brown notes, when telling people to avoid sugar it is okay to add the 3 magic words: ?except for chocolate!?
As one can see, people would do best if a healthy dose of common sense and compassion was included in the treatment of CFS/FMS/ME. Let us look at 2 other critical areas where adding common sense would be especially important in the treatment of these conditions.
The first is an understanding of what the normal ranges mean for lab testing. Most normal ranges are based on what is called 2 standard deviations, which means you are only abnormal if you are in the highest or lowest 2.5% of the population. To put this in perspective, a normal range for shoe sizes would be 5 to 13. This does not mean that any shoe in that range will fit every person. In the same way, the fact that a blood test is in the normal range does not mean that it is acceptable for that person. Unfortunately, most physicians use the normal ranges incorrectly, presuming that a normal thyroid test, for example, means that no thyroid hormone is needed regardless of the person?s symptoms. When physicians do this in a person whose symptoms make them a poster child for low thyroid, I recommend the doctor wear a size 5 shoe till the patient?s next visit, as a size 5 shoe is in the ?normal range? of 2 standard deviations.
CFS/FMS/ME represent widespread dysfunctions in multiple systems rather than complete failure of a single system, so lab tests will often be in the lowest fifth to tenth percentile?in the normal range, but still needing treatment. Because of this, it is especially critical in this illness to treat the person and not only the lab tests.
Another area where there is dramatic room for improvement? Communication between health practitioners of different backgrounds. It is shocking to see how little most chiropractors, MDs, acupuncturists, and NDs truly understand about what the other is doing, let alone understand the dozens of other areas of health care. I sometimes picture the shock that would occur if these 4 practitioners simply sat around the dinner table and explained to each other what they do! Yet, this is exactly what is needed. To help promote this, we have launched the Fatigue and Fibromyalgia Practitioner Network (FFPN). The basis of this is a free, Facebook-like ?practitioners only? forum where all health practitioners worldwide can share questions and information, discussing how to treat many different conditions and ask me and the other practitioners questions. As a reward for beginning this dialogue, pratitioners will be able to get a 7.5% to 10% discount off of wholesale from many supplement companies. In addition, people with CFS/FMS/ME are constantly asking us how they can find a knowledgeable practitioner. To help with this, the FFPN offers online/CD practitioner training workshops in CFS and FMS. Completing this training will allow practitioners to be put on the FFPN Web site referral list. For more information, see http://www.Vitality101.com/FFPN.
Highly effective treatment is now available for CFS/FMS/ME, using a mix of treatments tailored to each individual. What has been missing is a way for people with these conditions to connect with knowledgeable practitioners, and a way for health practitioners of diverse backgrounds to communicate with and teach each other. This, fortunately, is now changing!
AUTHOR DISCLOSURE STATEMENT
The author is on the scientific advisory boards of Integrative Therapeutics, Nature?s Way, Bioenergy Life Sciences, EuroPharma, and a number of journals and other publications.
- Teitelbaum JE, Bird B, Greenfield RM, Weiss A, Muenz L, Gould L. Effective treatment of chronic fatigue syndrome and fibromyalgia: a randomized, double-blind, placebo-controlled, intent to treat study. J Chronic Fatigue Syndrome. 2001;8(2):3-28.
- Reme SE, Eriksen HR. Is one question enough to screen for depression? Scand J Public Health. 2010;38(6):618-624.
- Teitelbaum JE, Bird B. Effective treatment of severe chronic fatigue: a report of a series of 64 patients. J Musculoskeletal Pain. 1995;3(4):91-110.
- Teitelbaum JE, Jandrain J, McGrew, R. Treatment of chronic fatigue syndrome and fibromyalgia with d-ribose?an open-label, multicenter study. Open Pain J. 2012;5:32-37.