Management of CFS

Time had run out by the time we got to this part of the presentation. Nearly a dozen charts summarized a variety of interventions, which were broken down into 4 major categories (pathogenisis directed): immune modulatory approaches, HPA-axis interventions, neurally mediated hypotension (NMH) treatment, and sleep. Since many of these were not discussed in detail, most have been left off because their use, benefit or status is uncertain. (A number of therapies are in various phases of study.)

Overall, Dr. Klimas indicated that sleep should be one of the first problems to be treated. Earlier, she talked about the Stage III and IV sleep inducers. She also mentioned Doxepin as another helpful medication for sleep.

On her chart, it is noted that short acting hypnotics should be avoided (as they can “trap” a person in light alpha wave sleep).

Melatonin and Ritalin were also noted as still being studied for effectiveness in CFS, but the response/results to these appear to be rather poor. (In one study of 60 CFS patients, placebo-controlled, using 10 mg. BID of Ritalin, only 17% of subjects reported decreased fatigue with 22% showing improvement in concentration.)

The following information on immune modulatory treatments comes not from her lecture, but directly from Klimas’ PowerPoint notes. The text of the notes is as follows: “Ampligen, a immune modulator and antiviral (Phase 3 recently completed); Allergic immunotherapy to dow-regulate allergic drive; Future immunomodulators (trials underway): Isoprinosine, thalidomide, anti-TNF-alpha monoclonal Ab.”

Dr. Klimas’s PowerPoint notes (not mentioned in lecture) also state, under HPA-axis interventions—“Growth hormone study – was in Phase 1 (Antwerp study).”

Dr. Klimas mentioned a drug that is being used in Japan called Neurotropin is used to treat reflex sympathetic dystrophy and other painful conditions. Neurotropin is a “non-protein extract of cutaneous tissue from rabbits inoculated with vaccinia virus.” There is some indication it may be helpful with CFS. However, the drug has not undergone clinical therapeutic testing in the United States.” (Source: Clinical Trials – NIH site).

A survey was been done at the University of Iowa to determine things that patients have tried and found to be helpful. (Bentler SE, J Clin Psychiatry May 66(5) (2005): 625-32). A few supplements: Co-Q10, DHEA and ginseng were found to be helpful.

[Ed. Note: Treatment with DHEA can have very serious side effects and must be managed and monitored by a competent physician. Dr. Klimas has stated she is against such treatment. Also, there is some literature that of 3 types of ginseng, only one is helpful to CFS patients, while the other two types may worsen symptoms.]

Vitamins predicted improvement. Yoga seemed to be the most helpful form of exercise and treatment. However, the subjects in this study were described as having “unexplained chronic fatigue of unknown etiology for at least 6 months”—hence participants may or may not have had CFS.

Another study at the Univ. of Georgia (Black CD and McCully KK, Dynamic Medicine Oct 28; 4 (2008): 10) examined how people with CFS were initially able to meet target goals in a prescribed daily walking program (for 4 to 10 days), but then these individuals developed exercise intolerance and worsening of symptoms.

Dr. Klimas feels exercise is beneficial, but it is usually is best tolerated in short intervals (even 5 minutes at a time) with many rest breaks in between.

Dr. Klimas’ PowerPoint presentation (not presented in lecture) also noted certain dangers of nutritional interventions including: “Licorice root—potassium deficiencies [that can affect the heart]; ‘supplements’ that are actually hormones [including DHEA]; ‘supplements’ that have iffy contents—eg., St. John’s Wort, melatonin; products that make unsubstantiated claims; Under and overhydration.”

[Ed. note: either of these states can be very serious. Having enough water is important, but drinking too much water can harm essential physiological systems and processes.]

Everyone should really exercise caution about taking supplements without a full appreciation of their side effects or interactions with current medications.

So, what we can take away from this latest presentation is that there have been ongoing studies to help better understand ME/CFS. The breadth and depth of biologically-based ME/CFS research is expanding. There is some promise of more effective therapies—targeted to specific physiological systems—becoming available. Researchers conducting gene expression studies also hold out hope that their research may yield effective therapies.