A Blog For Those Affected By Environmental And Invisible Illnesses Written By Fellow Survivors
Lost Youth and Lost Lives: The Devastating Consequences of Chronic Fatigue Syndrome
This week the online medical journal BMJ Open published a study whose findings re-opened old wounds and caused me great dismay. The study looked at every pupil between the ages of 11 and 16 at three high schools in England and revealed that 1% of the total student population had myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). The researchers also reported that the illness accounted for more than 6% of pupils who were missing large amounts of school.
What struck me as shocking was that 20 years after myself developing ME/CFS aged 11 the illness is still very poorly recognised. This is evidenced by the study scientists reporting that only five students had already received a diagnosis of ME/CFS while the study itself identified a further 23 cases. From experience I can say that there is little sympathy sent your way when you have this disabling illness, even as a child. Those 23 kids who were yet to be diagnosed were no doubt in even more distress and likely seen as hypochondriacs or truents.
This study looked at only students who were missing at least one full day of school every week over a six week period. For the first three years of my illness I missed an average of two days of school per week. However, a large chunk of the days when I were absent were due to the fact that as a sporty kid I refused to give up physical education (PE) lessons. Most of my days absent from school were the days immediately after days that include PE. My body required the next day in bed to recover. At the time I thought the trade-off was worth it as I loved sports so much and was still able to keep on top of my academic work despite the missed days. In retrospect I know that pushing my debilitated body beyond its limits on a regular basis was not wise and ultimately contributed to a decline in my condition. What I'd like to point out however is that if I had abstained from PE lessons I could have pushed myself and been absent from school less than one day every week. Knowing other ME/CFS sufferers also have a great desire to push themselves, I would say that using an abritrary measure like "being absent from school one day per week" could only lead to this study underestimating the number of high school kids suffering from this cruel illness.
Although my school accepted my diagnosis of ME/CFS they did not provide much in the way of support. I accept that teachers and other school staff are already under a lot of stress and have limited time but I would expect that a chronically ill child would be given the support they need to make the best of their situation and fulfill their potential. I don't recall being given much in the way of flexibility regarding the amount of work expected of me or time given to complete it, for example. Reading through my old report cards a while back I was quite shocked to find teachers remarking that I was obviously intelligent but did not always apply myself fully or put in as much effort as I should. Well of course I wasn't always working at 100%...but then, what kid is? At least in my case the reason wasn't (always!) gossiping with friends. I was often struggling with fatigue, muscle aches and pains, fierce headaches, and a whole host of cognitive problems including inability to concentrate and a memory that often required hours rather than seconds to recall a fact. In addition, a noisy classroom of 30 kids is far from the ideal environment for an ME/CFS patient to get the most out of themselves! I suspect that most likely not all my teachers even knew I had ME/CFS, what it is, or even that I was ill at all. The school certainly never called my parents in to discuss my illness, what support or accomodations I might need, or any kind of strategy to help me. I would like to hope that things are now different but the fact that the majority of students in this study had not even been given a diagnosis suggests there are literally thousands of kids struggling with school without even the recognition that they have a disabling medical condition.
Another key piece of information to come out of this study is that all students identified as suffering from ME/CFS were offered treatment with either cognitive behavioural therapy (CBT) or graded exercise therapy (GET). Nineteen chose to take the treatment and as a result, 12 were back at school full-time after six months and six had made a full recovery. While I, like many affected by ME/CFS, feel CBT and GET are not the best treatment options available, I am certain that early intervention is key to recovery from this devastating illness. What is needed is a coordinated effort medical and educational institutions to ensure that kids suffering from ME/CFS are identified as early as possible and that suitable treatment and support is given. Without this, sick teenagers often become sick adults, marginalised and unable to fulfill their potential and contribute to society. The physical and psychosocial suffering endured by kids with ME/CFS is immense...but it could be much reduced if only schools were more aware of the signs of the illness.
Source: Crawley EM Emond AM and Sterne JAC (2011) Unidentified Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) is a major cause of school absence: surveillance outcomes from school-based clinics BMJ Open 1:e000252 doi:10.1136/bmjopen-2011-000252