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

Andy

Andy

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

Comments from 70 participants provided the basis for qualitative analysis. Participants who completed the single survey poll (n = 617) and those who provided blog commentary (n = 70) were analyzed and reported on separately. It is assumed that those who provided survey data or blog comments were of adult age (i.e.,>18) due to the survey item’s request for patients to report retrospectively on childhood experiences. However, no explicit information on age, location, or gender were collected. The authors’ Institutional Review Board was consulted via email regarding informed consent and study procedures. Due to the public nature of the blog commentary and poll, it was deemed unnecessary for review. Regarding anonymity, usernames and/or other identifying information associated with verbatim qualitative responses were omitted in this manuscript. While usernames and/or other identifying information can be found on the host’s website, Eldh and colleagues suggest that using verbatim quotes more effectively captures the informant’s emotions and experiences, especially in regard to limited data sets
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"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.
 
CRG said:
"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.
Click to expand...

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
 
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