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How is it to be an adolescent living with chronic fatigue syndrome/myalgic encephalomyelitis?

Messages
58
In the interview she says: "Adolescents with ME often get (or develop*) anxiety, and they have a 10 times higher chance of developing depression compared to the normal population.

At first glance, this seemed like absolute nonsense to me. My off the cuff estimation was that a 10x higher risk for depression in adolescents with CFS vs those without would equate to a greater than 100% risk. The abstract of the Crawley paper that the author of this paper cited for depression rate in pediatric CFS patients was listed at 29% (http://adc.bmj.com/content/98/6/425). NIMH puts percentage of adolescents who have had a 12 month depressive episode at 20%, with 12.5% having a major depressive episode at any one time (https://www.nimh.nih.gov/health/statistics/prevalence/major-depression-among-adolescents.shtml). Unless Brit kids are a lot less likely to be depressed than American kids, the increased risk becomes a maximum of 2.5x, not 10x. Following a hyperbolic statement with a citation to make it look like it is backed up with factual information when it is not is deliberately misleading, and poor scientific reporting.

I agree with those here who've called into question the second subtheme about anxiety over missed school work. As someone whose CFS started in adolescence, I was far more worried about missed attendance, not seeing friends, and being unable to perform the basic activities necessary to get to school in the morning than I was about the work. The only anxiety I felt that way was that I would be graded unfairly due to having to cram weeks of course material I'd receieved the day before a test, or being forced to take tests while enduring severe flu-like symptoms. Once I got access to the school coursework via computer, I blew through entire courses in a week, despite being coherent only a few hours a day. All this really points to is that adolescents with CFS should receive the same accommodations as other students with disabilities, rather than being held to the same standards as their healthy peers due to assumption of malingering on the part of the school and/or medical system.
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
As a former adolescent with ME/CFS, I can say that probably the worst part was being misdiagnosed and told it was all in my head.

Although I'm not suicidal, I can honestly say that I wish I had carried out my suicide plans as a teen.

Living 4 decades with this hell disease with no clue as to how to manage symptoms and no one, not family/doctors/teachers/friends/employers/government believing me has not been worth it.

@Webdog, I liked your post because I certainly understand what you are saying and you have said it most powerfully.

I wish that people in a position to make decisions about funding ME research and all those encountering people with ME could read your post and understand that the disbelief and lack of useful treatment must end.