- Last Updated: 10 January 2016 10 January 2016
Living in the “energy envelope”
Mitochondrial specialists advise conserving energy to minimize the two types of fatigue. 51 ME/CFS specialists advise acknowledging the finiteness of energy for each patient for each day. Some call this the “energy envelope.” 59, 60, 61 Unfortunately, the energy and ability to function will vary for the patient from day to day. Especially if more is done one day, less will have to be done on following “recovery” days. Thus, the patient needs to make constant cost/benefit judgments about doing activities that use energy. There will be times that a patient decides that the psychological and emotional benefit of an activity outweighs the physical cost. That is acceptable, as long as the patient attempts to limit the physical damage that follows the activity and recognizes the recovery time that will be necessary. 63 We consider this acceptable since it is now known that most patients either do not recover, or don’t recover for years, if not decades. 62, 64 , 65 It is psychologically important for a patient to have some daily activity that creates a vestige of joy and psychological well-being, and not put everything “on hold” awaiting a recovery that might not come. 63
Supplements to treat mitochondrial dysfunction
Other than metformin, angiotensin II receptor inhibitors, and angiotensin converting enzyme inhibitors that help with the mitochondrial dysfunction of type-2 diabetes, there are no known pharmaceuticals for mitochondrial dysfunction. 27 Thus treatment consists of pacing (as described above) and over-the-counter supplements. Physicians will have to adjust dosages for the individual patient, especially keeping in mind that ME/CFS patients tend to be very sensitive to pharmaceuticals and supplements. It should be noted that very few side effects, if any, are known for the supplements below and very few interact with pharmaceuticals. More information about side effects, maximum safe dosages and interactions with pharmaceuticals can be found in the PDR for Nutritional Supplements 56 and on our website in "Review of Nutritional Supplements Used for ME/CFS/FM."
When we give dosages, we are usually quoting those given by mitochondrial specialists (which tend to be higher than those suggested by ME/CFS specialists). It is still not known what levels in the blood are needed to cross the cellular membrane and enter the mitochondria. 57, 58 Besides pacing, treatment is broken up into the categories of improving the function of mitochondria, antioxidants to help prevent damage from ROS, and recovery from excess acidosis and post exertional malaise.
- Magnesium (up to 600 mg a day 2, 71, 76, 80, 81 (Blood levels must be monitored periodically for patient safety))
- Co-enzyme Q-10 (100-200 mg three times a day) 27, 50, 51, 58, 66, 67, 68, 69, 72, 79, 80, 81
- Acetyl-l-carnitine (500-1000 mg three times a day) 50, 51, 79, 81 (The acetyl-l form of acetyl-carnitine crosses the blood/brain barrier and helps brain mitochondria as well)
- Creatine 50, 77, 78
- Folic acid 50, 79
- Malic acid (600-1200 mg twice a day) 2, 80, 81
Antioxidants for ROS
- Vitamin C (1000 mg twice a day) 28, 50, 51, 58, 73, 79
- Vitamin E (400-600 IU) 50, 51, 58, 73, 79
- Alpha-lipoic acid 28, 58, 66, 73, 79
- Vitamin B-6 74, 79
Recovery from prostration fatigue
- Vitamin B-1 (thiamine) (100 mg twice a day) 70, 50, 55, 79, 80
- Vitamin B-2 (riboflavin) (100 mg) 70, 50, 55, 79, 80
- Biotin (5 mg twice a day) 70, 55, 71, 75, 76, 79, 80
Postponing build-up of lactic acidosis
- Time-release guaifenesin (600-800 mg) 82
There is anecdotal evidence that guaifenesin slows the build-up of acidosis in skeletal muscles of ME/CFS patients who had enteroviruses or other skeletal-muscle attacking viruses as the trigger for their illness. Thus they have special extra damage to their skeletal muscles. Precisely why guaifenesin works is unknown, but it definitely does work for some patients. Guaifenesin is a uricosuric—a drug that increases the excretion of uric acid from the blood into urine. 83 It seems to help the excretion of excess phosphate from the cells of the body, which might have a bearing on mitochondrial dysfunction, since excess intracellular phosphate builds up with the hydrogen ion H+. 82, 83 Thus it might just act as a chemical buffer in the blood, slowing the build-up of acidity. The ME/CFS patient population that might be helped by this drug is a probably a small subset of the ME/CFS patient community.