Reprinted with kind permission of Health Rising, Sunday, October 20th, 2013
By Cort Johnson
Dr. Lapp has been treating chronic fatigue syndrome and fibromyalgia patients for decades at the Hunter-Hopkins Center, and regularly participates in clinical trials. In his latest newsletter he addresses the cognitive problems found in ME/CFS, briefly reviews the scientific literature, and offers up some treatment ideas.
It’s tough to lose your mental sharpness to a disease but all may not be lost. Dr. Lapp suggests some ways to combat the cognitive declines common in chronic fatigue syndrome. The research says the cognitive deficits in ME/CFS are relatively subtle compared to some other illnesses, but my guess is that a series of subtle deficits in information processing, short term memory, concentration, etc., can lead to pretty big cognitive and emotional hits.
Dr. Lapp notes cognitive problems are amongst the ‘most functionally disabling and disturbing symptoms found in ME/CFS.
The easy distractability, and flitting from half-completed task to half-completed task is something that I struggle with every day. It’s perhaps not surprising that several studies suggest high rates of ADHD are present in both fibromyalgia and chronic fatigue syndrome.
Short-term memory problems and intrusive body sensations can make it difficult to follow conversations and understand the printed word. Of course, there’s also the sheer mental fatigue; the inability to, at times, meaningfully incorporate, grasp or even understand outside events. It’s as if a wall came down, and all one’s mental energy is devoted to keeping one’s body going.
The loss of spontaneity and richness that disappears from interactions, and the kind of blasted or half-self that’s left over sometimes can be devastating emotionally. For me, when it gets that bad, all I can do is cultivate patience.
Documenting the Brain Drain
Dr. Lapp notes that neuropsychological tests can find deficits, but other tests can provide insights into the causes of the cognitive issues in ME/CFS. Brain MRI’s find Unidentified Bright Objects (UBO’s not UFO’s) – small brain lesions – in up to 80% of ME/CFS patients, and they appear to be correlated with physical impairment. The amygdala may be one area of the brain damaged in ME/CFS.
Researchers have not known what to do with these small lesions. Because they tend to occur in different places in different people, and because healthy people can have them, it’s not clear how important they are. However important or not important each specific lesion is, though, the fact that people with ME/CFS have significantly more small lesions than healthy people, in itself, suggests something significant has gone awry.)
SPECT scans often show reduced blood flow (i.e., reduced metabolism – reduced brain functioning) in the temporal lobes, amygdala, hippocampus and midbrain. PET scans show reduced metabolism in the brainstem, which controls many of the basic functions of the body (heart rate, breathing, sleeping.) Some brain volume appears to have been lost in the most severely ill – perhaps because of reduced physical activity) – and can be prevented or reversed by physical activity – if you can do it. Japanese studies indicate low levels of carnitine (acetyl-carnitine) are associated with reduced cognition.
Improving Cognition in Chronic Fatigue Syndrome and Fibromyalgia Supplements
- Carnitine – Dr. Lapp confirms that carnitine (1000 mg/day) can help with thinking, concentration and memory. Acetyl-carnitine increases glutathione levels (reduced in brains of ME/CFS patients), increases brain blood flow (reduced in ME/CFS), ATP production, and acetylcholine activity.
- Gingko Biloba – can increase brain blood flows – again, a documented problem in ME/CFS.
- Phosphatidyl serine (PS) – brain PS levels are associated with normal nervous system signaling, glucose consumption and other factors important in brain functioning.
- B-12 – methylcobalamin 1000mcg to 5000mcg daily / methylfolate (400mcg daily)
- Procera AVH (acetyl-carnitine + vinpocetine+ huperzine) – Derived from the periwinkle flower, vinpocetine increases cerebral blood flows, and, according to Procera’s manufacturers, has been shown to increase memory and brain processing speed – both of which are impaired in ME/CFS.
- Vinpocetine also is an anti-oxidant/neuro-protective agent, and can increase glucose metabolism (energy levels) in the brain. Derived from Chinese Club Moss, huperzine A (HUP) increases the levels of the neurotransmitter acetylcholine in the brain, and is an antioxidant.
Pharmaceutical companies are more and more interested, as our population ages, in finding drugs to enhance cognition
Defects in folate and B12 metabolism are sometimes found in chronic fatigue syndrome, and some patients find B-12 protocols work very well. Both defects are thought to contribute to cognitive issues.
- B-12 – Deplin ( 15 mg of methylfolate), Metanx ( 3 mg methylfolate / 2 mg B12 / 35mg pyridoxil-5-phosphate), and Cerefolin NAC (methylfolate 5.6mg, B12 2mg, N-acetyl cysteine 600mg).
Pharmaceutical companies have been plumbing the ‘brain enhancement’ market more and more as our population ages, and studies reveal nutritional deficits in the brain. The ‘medical foods’ below target nutritional deficiencies associated with disease.
- Vayacog (omega-3 fatty acids 26mg + phosphatidyl serine 100mg) – this ‘medical food’ was created to repair lipid (fatty acid) imbalances that have been associated with memory problems.
- Axona (an alternative energy source that the brain can use instead of glucose, 40 gm twice daily) – FDA approved to treat Alzheimer’s, Axona attempts to alleviate the effects of the reduced brain glucose levels associated with that disease. Axona metabolizes to ketone bodies which the brain can use when it’s not using glucose. Axona comes in small packets and is mixed with liquids. Half the ME/CFS patients in one study demonstrated reduced cerebral glucose uptake in one part of their brain for another in one study, and 90% did in another earlier one.
- Prevagen (a jellyfish extract that affects calcium channels).
Drugs Used in Alzheimer’s
Dr. Lapp reported that galantamine (Razadyne), donezepil (Aricept), and memantine (Namenda) have all undergone brief trials in ME/CFS, but while some patients respond to them, most do not, and in general, unless dementia is present, he doesn’t recommend them. Dr. Lapp has run the Hunter-Hopkins Center for the treatment of Chronic Fatigue Syndrome and Fibromyalgia for almost 20 years
Mind-Stimulation the Old Fashioned (and New-Fashioned Way)
Dr. Lapp recommends challenging your mind with crossword puzzles, word games, card or board games and computer games. (Like anything else – if you don’t use it – you can lose it.) He also recommends mind-stimulating websites such as Lumosity whose authors, Dr. Lapp reports, have ‘a special interest’ in ME/CFS).
Interestingly, Dr. Lapp did not recommend some of the more well-known cognitive enhancing drugs such as Ritalin (methylphenidate), Provigil (Modafinil) and Adderall. [Note: All of these are stimulants, which are known to cause rebound fatigue in ME/CFS patients]
- Carnosine – Carnosine supplementation in Gulf War Syndrome (GWS) increased one cognitive outcome substantially (and lead to a decrease in diarrhea as well )
- Yoga, Meditation/Mind/Body Techniques – have been shown to increase concentration and improve cognition as well.
About the Author: Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising