Sometimes I'd look at words or pictures but see only meaningless shapes. I'd stare at clocks and not understand what the positions of the hands meant. Words from different parts of a page appeared to be grouped together in bizarre sentences: 'Endangered Condors Charged in Shotgun Killing.' In conversation, I'd think of one word but say something completely unrelated: 'hotel' became 'plankton'; 'cup' came out 'elastic.' I couldn't hang on to a thought long enough to carry it through a sentence. When I tried to cross the street, the motion of the cars became so disorienting that I couldn't move. I was at a sensory distance from the world, as if I were wrapped in clear plastic.
A traditional case of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has a sudden onset and is accompanied by flu-like symptoms. One day a person is normal, and the next day, they don't feel like themselves. About 250,000 people in the United Kingdom suffer from myalgic encephalomyelitis. In 1999, DePaul University's Dr. Leonard Jason ran a community-based prevalence study of CFS in the Chicago area, contacing 18,675 ethnically and socioeconomically diverse households. The results indicate that CFS is a chronic condition, overall affecting 422 per 100,000 in the population, or about 836,000 people in the United States (based on the current US population count of 198,107,000 adults aged 18 years and older). 1
ME/CFS first occurred in the US in clusters, initially documented in the 1920s. However, the Centers for Disease Control did not take notice until the mid 1980s.
The CDC refused to call myalgic encephalomyelitis by its scientific name, rejecting it as "overly complicated and too confusing for many nonmedical persons." The stigma tagged onto a syndrome title (as opposed to a disease) has contributed to the struggle for understanding and recognition of those suffering from ME/CFS. "The CDC name functioned as a kind of social punishment. Patients were branded malingerers by families, friends, journalists and insurance companies, and were denied medical care. (It's no coincidence that suicide is among the three leading causes of death among sufferers.)" -A Case of Chronic Denial, NY Times
A new UK study on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) claims that cognitive behavioral therapy (CBT) and graded exercise therapy (GET) help patients more than adaptive pacing does. Pacing is essentially figuring out how much energy one has on a given day and not expending more than that, while still working to achieve goals without exacerbating the illness.
While CBT may improve quality of life for people with ME/CFS or people with any chronic illness, it most likely cannot improve their somatic symptoms Patients afflicted with ME/CFS suffer from post-exertional malaise (PEM), which means they can be wiped out for days following minimal physical activity.Because of this, GET can be very detrimental to the health of individuals with ME/CFS. Some critics of the study have suggested that the inclusion criteria were too broad and therefore may have incorporated individuals with primary depression, not ME/CFS. Subjects were not required to have PEM, a cardinal symptom of ME/CFS. Both CBT and GET may have increased benefit for individuals with primary psychological issues. Critics of the study have also suggested that the measures used to assess the health outcomes of these trials were inadequate.
1. Jason, L.A.,. Richman, J.A., Rademaker, A.W., Jordan, K.M., Plioplys, A.V., Taylor, R.R., McCready, W., J Huang,C., & Plioplys, S. (1999). A community-based study of chronic fatigue syndrome. Archives of Internal Medicine, 159, 2129-2137. PMID: 1052