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Chronic fatigue syndrome affects 2% of teens, study finds

Chronic fatigue syndrome is more common than originally thought, affecting nearly 2% of teenagers, researchers have concluded. 

Researchers, who surveyed 16 year-olds and their parents about mood and behaviour, found that 1 in 50 teens are likely to experience CFS for more than three months, with girls almost twice as likely as boys to be affected.

Teenagers with higher levels of family adversity were also found to be at a higher risk of CFS in the study.

The researchers admitted a diagnosis of CFS was made from judging questionnaire responses rather than through a clinical classification.

But the researchers believe this was adequate and said: ‘We are as confident as we can be that we have the right prevalence figures here. [The teenagers] weren’t diagnosed by a doctor but you can’t do that as half wouldn’t turn up’.

The study, published in Pediatrics, concluded that there needs to be more awareness of the condition to ensure that teens are diagnosed correctly.

The researchers write: ‘Awareness needs to be raised to ensure that families of children affected by CFS access specialist medical care, and that paediatricians and those looking after children are trained in the identification and management of CFS.’

Experts believe that the study has highlighted the need to diagnose and start treatment for CFS sooner in teenagers.

Dr Phillip Hammond, a former GP and commentator on health issues, said: ‘We need to be more proactive in spotting [CFS] and starting treatment. GPs are vastly over worked at present but as a former GP, I think there is much we can do to help those with milder forms of the illness.

‘I think at the very least GPs should know where the nearest specialist centre is and what the referral criteria are for assessment and treatment, although currently it is something of a postcode lottery.’

Mary-Jane Willows, chief executive of Association of Young People with ME, added: ‘Our own research in 2015 revealed that 94% of children with CFS reported being disbelieved and, combined with the results of this study, we hope this unequivocal need for a far better level of understanding from health and education professionals will signal the beginning in a shift in access to treatment, with currently only 10% having access to a specialist’

A previous Dutch study in 2011 estimated the incidence of CFS in teens to be around 0.1%.

 

Readers' comments (17)

  • Could the criteria for depression also describe this group? Are we too afraid of a label of mental illness? Do "specialist centers" achieve better results than good GP care? I probably need to read the article as Phil Hammond is a credible bloke...

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  • I expect some of it is accounted for by increased incidence glandular fever in this age group.However I wasnt aware there was any specific treatment and paediatricians locally usually would see the patient only once to outrule another cause and then usually discharge with reassurance!

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  • Thats a difficult one. Being a teenager is complicated these days. I would first rule out poor sleeping and dietary practices before attaching a label of CSF to a child.

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  • @Medical student - 03 Feb 2016 3:29pm

    Oh dear, please educate yourself before you encounter any real life patients....

    http://iom.nationalacademies.org/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf

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  • Ha ha ha ha ha - no they don't!

    Researchers trying to make a name for themselves invent a questionnaire that delivers the results they are after. End result: more overmedicalisation. Bingo! More research contacts coming our way!

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  • When the researchers point out that current CFS criteria apply to 2% of teenagers, are they telling us something about teenagers, or are they telling us something about the usefulness of current CFS criteria?

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  • Yeah, but it affects 99% of GPs. Go figure.

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  • AS a mother of a young woman with ME/CFS who got whatever it is when she was 16 (now aged 30),I think the time limit should be well over what people commonly suffer from most post viral fatigue. The genuine sufferers whose lives are blighted by CFS, are often belittled by others who appear to make miraculous recovery after a few months. These people then patronise those who struggle for years with the condition as uncooperative or lazy.
    GP's or not, if you have children, and one day you see you beautiful 16 year old daughter who was once full of vitality and ambition, crippled to the point she is bedridden 23 hours a day, too weak to eat or stand, muscles visually twitching, migraine after migraine, periods of vomiting and retching for no discoverable reason, you would be worried. Then perhaps one or two days a month, almost normal, cruelly allowing a taste of normality, only to lose it again and again, then payback for that normality is back to bed again, sleeping for 15-20 hours a day for several days. One doesn't bother the GP because bloods are normal and there is nothing clinical knowledge can do. Many of these people are hidden because they know there is no treatment that works for them, only hangers on, trying to make money from the desperate with quackery. The PACE trials are scary because one has already experienced gradually trying to do a little more,year after year, but experience and living with CFS shows this only results in yet another relapse.
    Because the lifestyle often results in depression, CBT can help some, but the NICE Guidelines and PACE trials on which they are based misguides many health professionals into thinking CBT helps the CFS, rather than the restricted lifestyle that results in depression. The implications on those struggling day to day with the exhaustion beyond arousal at times, not just "tired" is patronising and demoralising.
    Even a GP my daughter saw a couple of weeks ago because she needed a letter of evidence stated, "Well I feel tired in the mornings too. You just have to push yourself!".
    I have seen my otherwise ambitious daughter many a morning, almost like in a paralysis, unable to move, eat, dress, wash. Even if food is taken to her, she hasn't the strength to eat. I fear for what will happen to her when I am gone if this most misunderstood illness is not recognised and believed.

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