- Last Updated: 09 December 2015 09 December 2015
Symptom patterns in the long-term group
All groups were asked to respond to a list of 48 symptoms with "never", "rarely", "sometimes", "often", or "constantly" for each symptom. The two ME/CFS groups were asked to respond to each symptom twice. The first response was to indicate the level of severity of the symptom during the first year of illness.
The second response concerned the level of severity of the symptom at the time the questionnaire was filled out (1994).
I am sorry to say that the peer reviewers of the paper made us take out the information about the first year of symptoms because they felt the long-term group couldn't remember accurately that long ago.
We strenuously disagree with that position. We feel that the first year of illness was sufficiently traumatic that the general impression of what happened then would be correct even 59 years later.
Our position was bolstered by the fact that there was no significant difference in the symptoms and their severity reported by the two groups for the first year of illness.
There was a very significant difference in the two groups concerning their current symptoms, which I'll discuss later. Just looking at the differences in the percentages in the long-term ME/CFS group responding "Often" or "Constantly" to certain symptoms in their first year versus currently is very instructive.
The problems with neurological symptoms have significantly increased over the ensuing decades, while the level of more flu-like symptoms has declined.
The pattern is striking in Table 2 below.
Table 2. Symptoms Most Frequently Reported "Often" or "Constantly" in
Symptom________________________First year _________ _Currently
Prolonged fatigue after 63.4% 83.3%
Severe persistent fatigue 73.2% 84.3%
Muscle aches and pains 54.7% 79.8%
Forgetfulness 38.3% 73.2%
Distractibility by noise 44.9% 69.0%
Concentration difficulty 48.8% 66.2%
Word-blocking 32.4% 65.9%
Distracted when reading 41.1% 63.1%
Sensitivity to light 41.1% 62.7%
Difficulty thinking 43.6% 61.3%
Gait less fluid 37.3% 58.5%
Pain in the extremities 38.7% 54.7%
Joint pain 38.3% 54.4%
Confusion 38.0% 53.7%
Trouble matching 30.7% 52.6%
Insomnia 43.6% 52.3%
Trouble with written 59.6% 47.4%
Trouble with attention 58.2% 46.0%
Mild fever 56.8% 41.5%
Sore throat ___________ _ _ 55.1%________ ______ 33.4%