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Long-term vs. short-term ME/CFS

Although our short-term group was small, it was large enough to do statistically meaningful comparisons between the groups.

The mean age at onset was significantly lower in the long-duration group (28.8) as compared with the short-duration group (41.4) years, F = 3.10; df 1,315; p< .000005).

While there was no significant difference in severity of the illness for both groups during the first year, the long-term group was currently more severely ill than the short-term group.

Neurocognitive symptoms accounted for most of the increase in severity in the long-term group.

Table 5 shows which of the 48 symptoms were significantly different between the groups. The frequency denotes the percentage reporting experiencing the symptom at least "rarely", not just "often" or "constantly" as reported in Table 2.

Table 5.  ME/CFS Symptom Frequency in Long-term and Short-term Groups

(Significant Differences Only)


Symptom                               Long-term ME/CFS (%)   Short-term ME/CFS (%)

Word block                                 92.8                                          78.6**   

Bumping into things                  77.1                                          50.0***   

Putting the wrong word in         76.7                                          43.1***

Trouble with directions              71.0                                          44.0***

Burning sensations_        _____33.6_____________________14.3*____

***p < .0001


Most of the long-term cases were not working due to their illness, while most of the short-­term group were still working. No significant differences were found between the long-term and short-term groups on measures of fatigue severity, stress, depression, coping profiles social support or functional status.

A very interesting result occurred when comparing the long-term group's perceived causes of illness and the short-term group's perceptions. The short-term group members were significantly more likely to endorse causes over which they had control. Both groups strongly endorsed immune/viral factors and persistent stress, however. The perceived cause results are in Table 6.

 Table 6.  Perceived Causes of ME/CFS

Perceived Cause                        Long-term ME/CFS (%)     Short-term ME/CFS (%)

Immune/viral factors..                         90.6                                      82.1

Persistent Stress                                  63.9                                      75.0

Genetic/Hereditary                               45.7                                      23.1 *

Toxic exposure                                     43.8                                      53.9

Allergies                                               37.6                                      32.1

Emotional trauma                                 34.1                                      57.1

Physical trauma                                    28.4                                      18.5

Diet                                                      22.5                                       50.0**

Vaccination/Immunizatio                    18.1                                       10.7

Pregnancy                                               9.3                                        3.7

Birth control pills/estrogen                    8.5                                        7.4


**p<.OOl  *p<.O5


The coping style did not significantly differ between long-term and short-term groups.

However, when we did an analysis based on a median split of duration ( < three years vs. > three years) in the short-term group, an analysis of symptom and coping scores showed a trend toward higher scores on the maintaining activity scale of the Illness Management Questionnaire in the less-than-three year duration subgroup.

This subgroup also showed a trend toward higher fatigue severity, higher depression and higher stress symptom scores, compared to the over-three year duration group. The combination of higher activity and higher symptom levels suggest a denial of illness may be a coping strategy used by the more recently ill. The other coping extreme, high levels of symptom preoccupation, was not seen in this group. Thus, some cognitive behaviorial therapy might help the more recently ill who use a denial strategy rather than the long-term ME/CFS patient.