From Winter 2013-2014 Forum

Nearly three decades ago, Dr. Harvey Moldofsky discovered that patients that had “post-viral fatigue syndrome” had abnormal sleep and he believed that, perhaps, there was an underlying problem that caused arousal when the patients were asleep. His work on sleep disorders has been confirmed many times since then. Today, it is known that the “fatigue syndrome”, that we refer to as CFIDS/ME, is not always activated by a virus although it may well feel like it is viral at first and then intermittently as it slowly progresses. It’s unusual and just about unheard of for any patient to escape sleep dysfunction with CFIDS/ME and the disorders it produces can be found in several very old texts describing encephalitica lithargica.

Hypersomnia often marks the beginning of what is often thought, though mistakenly, to be a viral onset although a virus could trigger a more active existence and is sometimes mistaken for infectious mononucleosis or encephalitica lethargica since the patient often sleeps for 18 hours daily. While the adult patient experiencing this can compensate, parents of children who have this illness get very concerned, especially since weight loss accompanies this phase.

Insomnia follows the phase of hypersomnia and is found to be one of the many problems of CFIDS/ME accompanied by a wide variability in their body temperature. It is not unusual to have frequent periods of pronounced sweating while asleep just as it is not unusual to have the extremities of the body experience hypothermia where the fingers and toes become so cold that the symptom awakens the patient. The bladder may become more sensitive and nocturnal urine output often becomes another symptom. Nightmares are often vividly colorful and can awaken the patient, especially during the first stage of the illness. Patients find these dreams violent and horrifying as well as very detailed and often quite personal. Disordered sleep inversion is seen when patients sleep days and are awake nocturnally. To date, none have been able to change this along with so many symptoms without targeting the actual cause. Abrupt muscular movements may wake a patient as well as muscle cramps and other painful spasms.

Hyperaccusis (acute sensitivity to sound) may wake patients and it is not unusual to experience hypotension while asleep. The patients with light and fractured sleep find it is not unusual to be misdiagnosed with sleep apnea yet they do not respond to the medications and equipment given to them to deal with their “apnea”. One study, published in 2008 (Athritis Res Ther 10/6), found the day sleepiness of CFIDS/ME patients is due to “a decrease in the length of periods of uninterrupted sleep” and thought it could be the main reason for the “overwhelming fatigue.” However, the medical journal article offered to our members by the NIH’s own National Cancer Institute found that our “fatigue” is actually cancer-related and cannot be helped with better sleep habits or helpful aides. It is the reason why the NCF is determined to prove where the damage is first targeting and injuring our bodies so it will be known how to block recurring damage.

Good sleep hygiene is practiced yet seems to be just a small help if at all. Avoiding anything stimulating before bedtime and appropriate lighting helps a bit, of course, but doing very boring things before sleep seems to help the most! While there are many agents to help a CFIDS/ME patient go to sleep, many may become less effective and have to be switched over time. An article listing sleep agents has been offered by the NCF for many years but, like most articles, it does not explain many things sufficiently nor does it give enough information or include all helpful agents. Patients should also be aware that one of the drugs listed as helpful, i.e. Clonazepam (Klonopin), may be helpful for a year. However, when being used for the seizure disorders (petit mal) that accompanies CFIDS/ME, it should not be substituted nor used for sleep but merely as a welcomed side-effect.