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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

Long-term ME/CFS

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%  

    in conversation

Mild fever                                               56.8%                              41.5%    

Sore throat              ___________  _  _ 55.1%________ ______ 33.4%