Adults recall childhood experience of ME/CFS
Prof Leonard Jason’s team in Chicago surveyed 617 adults and found a surprisingly high number (43%) had begun feeling ill while adolescents. They analysed their symptoms and experiences and found common themes, which they believe can lead to a better understanding of the experience of ME/CFS.
Table 3. Summary of themes from qualitative analysis (N = 70)
| Themes | Central meanings | % (n) |
| Feeling misunderstood | Comments related to being misunderstood, dismissed, or not believed by peers, educators, and medical practitioners | 20.0 (14) |
| Mental health | Descriptions of poor or adverse mental health experiences, either as a trigger for ME/CFS, or as a result of the unique burden of this illness | 18.6 (13) |
| Family pattern/history | Mention of a family history of ME/CFS or related chronic illness | 17.1 (12) |
| Healthy childhood preceding sick adulthood | Descriptions of being previously very healthy, active children before illness onset in adulthood | 15.7 (11) |
| School attendance | Descriptions of poor school attendance or problems functioning in a school setting | 14.3 (10) |
| Lack of clarity until adulthood | Descriptions of being ill for most of the patient’s life, and not having received a formal diagnosis or understanding the cause of illness until much later in life | 8.6 (6) |
| Sharing of resources | Attempts to share valuable resources or information related to illness experiences with fellow blog participants | 8.6 (6) |
| Isolation/poor social supports | Feelings of loneliness or isolation as a result of functional limitations or stigmatization | 5.7 (4) |
| Coping mechanisms | Methods that patients used to deal with their illness, either in terms of symptom management or the mental/emotional toll brought about by illness challenges | 2.9 (2) |
“The present study has several implications for future investigation. It is important that researchers and clinicians better understand patient-reported illness and family genetic history, patterns of symptom onset, and environmental exposure throughout the lifespan for patients with ME/CFS.
Representation of these issues in the literature will bolster our understanding of possible illness triggers or predispositions to ME/CFS in childhood and adolescence, as were revealed in the present study. It will also aid in legitimizing the lived experiences of patients who do not feel believed of their illness. There continues to be a lack of representation and knowledge of this illness despite its prevalence.”
Adults with ME/CFS report surprisingly high rates of youth symptoms: a qualitative analysis of patient blog commentary, by Madeline Johnson, Chelsea Torres, Halli Watts-Rich, Leonard Jason in Work, Pre-press, pp. 1-11, 09 March 2023 [doi;10.3233/WOR-220484]
Research abstract:
BACKGROUND:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating chronic illness that impacts pediatric populations.
OBJECTIVE:
The current study aimed to better understand adult perceptions of their experiences leading up to their diagnosis of ME/CFS.
METHOD:
Patients provided data regarding symptoms of ME/CFS they may have experienced during childhood through a popular community blog forum, with participants interacting via blog comments in real-time and across various geographical locations.
RESULTS:
Descriptive analyses indicated that roughly 43% of adult survey participants reported having developed ME/CFS prior to age 18. A standard content analysis of patient blog commentary revealed several themes, such as poor mental health, family pattern/history, healthy childhood preceding sick adulthood, feeling misunderstood, lack of clarity until adulthood, sharing of resources, poor school functioning, isolation/poor social supports, and coping mechanisms.
CONCLUSION:
There are unique benefits and insights that can be used by investigators who collaborate with patient organizations as a means of better understanding ME/CFS illness severity, presentation, and lived experiences.
