Adults with ME/CFS report surprisingly high rates of youth symptoms: A qualitative analysis of patient blog commentary 2023 Johnson, Jason et al

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.

Open access, https://content.iospress.com/articles/work/wor220484

 

This feels like unacceptable use of message board posts, depending on how consent was provided, especially given the tendentious focus of the research.

It makes me wonder what protection S4ME has against ill-intentioned researchers, thread about that here. https://www.s4me.info/threads/copyright.32324/

 

Here’s what they said here about consent: (spoiler, it was “deemed unnecessary”)

 

They simply analysed a poll and comments on the Health Rising forum.

 

"Informed Consent
Due to the public nature of the blog commentary and poll, the author’s Institutional Review Board deemed informed consent unnecessary."

How would we feel if this approach was used by the "usual psych suspects" to advance a psychosomatic or sectarian BPS agenda ? Clearly we have to be responsible for what we 'put out there' but simply disposing of informed consent because 'it was in public' seems insufficient.

 

I think that’s close to what happened here, as the analysis includes psychosomatic tropes: 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

 

very short video
"Leonard Jason discusses the prevalence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) among a sample of 465 patients with Long COVID https://buff.ly/414Ri6n #LongCovid "

https://www.youtube.com/watch?v=fn2RFUs50QU