A recent Dutch study attempted to quantify how many kids/teens have ME/CFS, information that is badly needed. However, I don't think they quite got it right, based on the headlines I've been reading, like this one from Reuters: "Chronic fatigue rare but serious in teens".
The problem, which is explained in the linked article, comes from the methods employed. The study authors based the numbers on responses to surveys from pediatricians and general practitioners. Less than half returned the surveys, and only half of the GPs participating in the study said they even recognize CFS as a distinct diagnosis! So, the numbers are obviously much lower in this study than they are in reality. How can you rely on a doctor's count of cases of ME/CFS if he/she doesn't even recognize it?
I can tell you from the number of kids and teens with ME/CFS I know personally just in my local area and the number of parents I hear from through this blog, that ME/CFS is NOT rare in teens. If the CDC's estimate that almost 80% of people with ME/CFS are undiagnosed, then the number of teens affected must be much higher than this study cited. At least, the study authors emphasized the severity of ME/CFS.
It's an interesting article, though, and perhaps it will spark some necessary and far-overdue debates about the incidence of ME/CFS in kids and teens.
As for my own teens, they've both been home sick most of the week so far. Craig went back into school today, even though he wasn't feeling well. He's got some fairly severe congestion, too, so I'm taking him to the doctor this afternoon - don't want to get stuck on the road on a holiday weekend with a sinus infection! Jamie is still badly crashed with severe symptoms. My husband and I said to each other last night that if this crash is still just from attending his prom Friday night, that's pretty depressing. We're hoping they both feel well enough for our spring break trip.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
I'm not sure about the incidence numbers that are being reported in any population (simply because of the factors you cited already), but I'm glad the severity of CFIDS in teens is being talked about.
ReplyDeleteI'm sorry that the boys aren't feeling their best right now either. It sucks that special occasions can be so damaging. And constantly having to choose what's important enough to risk the crash is something I still struggle with, so I can definitely relate.
(Also, thank you for your very compassionate comment the other day ~ I hope that time will help as well.)
I didn't sleep Sunday night and that messed me up for about 3 to 4 days. Sometimes it can take awhile to recoup. I pray the boys start feeling better soon.
ReplyDeleteHope and pray your boys are doing better. It's so hard...
ReplyDeleteI am hopeful that the study will get its act together and get some real numbers. That would be so helpful for those of you who have kids with it!
Blessings.