Thursday, January 28, 2016

First-Ever Population Study of Teens with ME/CFS

Big news was announced this week from the University of Bristol in the UK: the first-ever population study to estimate the number of teens with ME/CFS was published in the journal Pediatrics. Even better: this new study is some exposure in mainstream media.

The reason this is a big deal is that there has NEVER been a population study done to estimate the number of children and teens with ME/CFS. The U.S. CDC has undertaken two huge population studies in the past decades - one in the Quad cities in Iowa and a more recent one in the Atlanta area - however, both of those studies included only adults, over age 18. Incidentally, those studies estimated 1 million adults in the US with ME/CFS and 4 million, respectively (most people feel that the second study used criteria that was too loosely defined).

To be accurate, this new study out of the UK is not a full-blown population study. It relied on self-reported surveys from teens and parents. A real population study - like the two conducted in the United States - use multiple phases to identify and confirm diagnosis of ME/CFS. They start with a phone survey, then a more detailed paper survey (or vice-versa), and finally identified potential patients are actually examined by a doctor to confirm that they do indeed have ME/CFS. So, this is more of a population estimate...but it is still the first time EVER that any attempt has been made to count children and teens with ME/CFS - a very significant event, especially for those of us with children with the disease.

So, what did the study show? It reported that 2% (1 in 50) of the teens studied self-reported symptoms that matched ME/CFS, lasting more than 6 months, and 3% had ME/CFS symptoms lasting at least 3 months (the UK definition). It also reported that past age 13, girls were more likely than boys to develop ME/CFS (I'm assuming the numbers were similar for the genders in younger children). Finally, they found greater numbers of ME/CFS in children from poorer economic status, hopefully putting to rest the "yuppie flu" moniker forever!

The study is being reported in mainstream media outlets:
  • Science Daily article - pretty good, mentions the lack of real treatment in the UK and the huge lack of awareness and understanding of ME/CFS - taken directly from the University of Bristol's press release.
  • Newsweek - eh, not so good. They do report on the study, but their background "facts" are very limited, focusing on "tiredness" and the CDC definition, with absolutely no mention of immune dysfunction or infectious agents. I left a comment, filling in some of the gaps.
One final note: though this is the first attempt to quantify total children/teens with ME/CFS, it is not the first study to show that ME/CFS is very prevalent in teens. Earlier studies that focused only on ME/CFS following infection with the Epstein-Barr Virus (EBV) - aka mono or glandular fever - showed a significant prevalence of ME/CFS in kids who's had mono. You can see some of those earlier study results from 2009 here and an article from 2014 here.

Please share this study widely to help spread awareness of just how common ME/CFS is in children and teens! (I would use the Science Daily link to share).

3 comments:

  1. A more balanced report here , http://www.forbes.com/sites/emilymullin/2016/01/27/how-common-is-chronic-fatigue-syndrome-in-teens/#bd84e8563bb4

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    1. Thank you so much for taking the time to share that link! I agree - the Forbes article is much better - and a nice high-profile pub, too. Thanks -

      Sue

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  2. Anonymous6:33 PM

    poor methodology does CFS a disservice. The selective criteria would not edit out those with " fatigue" that is not CFS- a common problem with this research team - chronic fatigue and CFS get conflated which renders the results unrepresentative. The lack of medical diagnosis is an issue in itself. Whilst I do believe that CFS is under reported in teens, this study is too poor to base much on which is a pity as funding is precious.
    Colby & Dowsett's study, although a long time ago had a much better basis.

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