Five-Year Follow-Up of Young People with Chronic Fatigue Syndrome Following the Double Blind Randomised Controlled Intravenous Gammaglobulin Trial

SummaryThree and 5 year follow-up studies of eighty-nine young people with Chronic Fatigue Syndrome who completed a double blind randomised controlled trial of intravenous gammaglobulin has been conducted to determine whether the improvement following the intravenous gammaglobulin was sustained.Initial telephone contact and a questionnaire that assessed functional outcomes including, physical activity, social activities, work/school attendance and work/school workload was used. Strategies and treatment that were found helpful and ways to improve management were also asked.Follow-up data were obtained on 86 of 89 after the study concluded. The 3-year follow-up yielded a 75% response to the questionnaire. A 78% follow up response rate at 5 years was achieved for those enrolled in the study with 84% (n = 74) of those who completed the study being traced. The mean follow-up time from commencement of illness was 56 months (s.d. 25 months), range 15-112 months. There was no persistent deterioration in function related to CFS in any young person. Four had reported recurrence of symptoms lasting 3-8 months and again improved. Others remained ‘improved’ or continued to improve.Seventeen per cent of those who responded were still moderately unwell with another 23% ‘not back to normal yet.’ Sixty per cent of participants considered they were ‘well’ at the last follow-up with 45% scoring 10/10. Seventeen (20%) had another condition during or after their illness. Anergy or hypoergy did not predict functional outcome at five years after the trial, although an earlier improvement was noted in those who were anergic and who received gammaglobulin.There was no deterioration in overall function over the 5 years following participation in the gammaglobulin trial, and young people continued to improve although a significant number were still disabled. The significance of the abnormal delayed type hypersensitivity reaction for the response to gammaglobulin is uncertain and warrants further investigation.