by Lourdes Salvador
Norwegian scientists surveyed 828 chronic fatigue syndrome patients to find out what treatments were most and least helpful.
Rest was rated the most helpful by 97% of participants, followed by pacing at 96%.
Pacing is a method of managing energy expenditure by limiting activities to the most essential that can be handled at a comfortable pace.
The easiest way to understand pacing is to imagine starting the day out with a handful of cards and each time energy is expended, a card is lost. When the cards are low, the day is over and sleep is required. Each activity of the day requires a card, including getting dressed, bathing, cooking, and visiting with someone. If too many activities exhaust the supply of cards, a deficit ensues and one nights sleep is not enough to recuperate.
Most of us start the day with unlimited cards. Certainly we have enough to get through until bedtime. For people with chronic fatigue syndrome, they have few cards to begin with and must pick and choose how they expend their energy so that they don´t run out of cards and collapse. This forces them to prioritize, establish routines, schedule extra rest, and keep activities short. This is known as pacing.
People with chronic fatigue syndrome also engage in shielding, which was rated as highly helpful by 96% of study participants. Shielding involves surrounding oneself in quiet and, in some cases, darkness. People with chronic fatigue syndrome are often sensitive to light and sound, which expends their limited supply of energy by stimulating the central nervous system.
One of the most misconceived treatments recommended by the medical profession is graded exercise therapy, yet 79% of the participants experience deterioration as a result. It stands to reason that with such limited energy to expend, using too much on exercise leaves woefully little, if any, energy for tasks of survival such as fixing meals, eating, paying bills, and bathing.
"Patients´ experience is important in this context," says Bjørkum and colleagues, "Graded training may cause deterioration of the condition in many patients."
Another failed treatment was cognitive behavior therapy, yet this is also widely recommended despite the scientific knowledge that chronic fatigue syndrome is a serious neurological disorder which can not simply be "thought" away.
More than 4 million Americans suffer from chronic fatigue syndrome and over 2.5% of the population aged 18-59 years meet the diagnostic criteria. Only 20% have been properly diagnosed. Though more frequent in women aged 40-59 years, people of all ages, ethnicities, economic statuses, and both sexes may be affected.
The exact cause is uncertain and likely multi-factorial. Conditions that have been proposed to trigger the development of chronic fatigue syndrome include viral infection, immune disorders, hypothalamic-pituitary adrenal (HPA) axis dysfunction, and toxic exposure.
Reference: Bjørkum T, Wang CE, Waterloo K. [Patients' experience with treatment of chronic fatigue syndrome]Tidsskr Nor Laegeforen. 2009 Jun 11;129(12):1214-6. [Article in Norwegian]
About the Author
Lourdes Salvador is the founder of MCS America, a science writer, and a social advocate for the greater awareness of environmental contamination, human toxicology, and propagation of multiple chemical sensitivity (MCS) as a disorder of organic biological origin induced by toxic environmental insults.
This article originally appeared in the MCS America News, June 2010 Issue http://mcs-america.org/june2010.pdf. For more articles on this topic, see: MCSA News.
Copyrighted 2010 Lourdes Salvador & MCS America