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BBC - Chronic fatigue syndrome on rise among 16-year-olds

worldbackwards

Senior Member
Messages
2,051
Chronic fatigue syndrome is more common than previously thought, particularly among girls at the age of 16, research by the University of Bristol suggests.

Persistent exhaustion was found to affect 2% of 16-year-olds - and almost twice as many girls as boys.

Children from poorer families were also more likely to have the condition.
2% my arse. Bloody Crawley strikes again.

http://www.bbc.co.uk/news/health-35383832
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
This is in line with the prevalence under Oxford criteria. I wonder what criteria were used. As we know the Oxford criteria need to be retired.

They are still perpetuating the myth that "chronic fatigue = chronic fatigue syndrome = ME", all of which have different symptom requirements and different prevalence, and most importantly they have different severity.
 

GreyOwl

Dx: strong belief system, avoidance, hypervigilant
Messages
266
Children from families with poor housing, financial difficulties and a lack of support for (sic) their mother were more likely to report problems of severe fatigue.

I only read the news article, not the published article, so setting aside that it's about "chronic fatigue" I'm wondering how this reconciles with BSP babbling about children of middle-class whiny over-protective mothers?
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
Not sure a pencil and paper exercise adds anything of value, apart from highighting that lots of school children have chronic fatigue.

...Persistent exhaustion was found to affect 2% of 16-year-olds - and almost twice as many girls as boys.

The Bristol study, published in Pediatrics, asked more than 5,700 parents and their children about their experiences of persistent exhaustion... The diagnoses of the condition in the study were based on responses to questionnaires sent to teenagers and their parents, and were not made by a doctor.

This large population study found that one in 50 16-year-olds have CFS/ME lasting more than six months and nearly one in 33 have CFS/ME persisting for more than three months.

In the study, those with CFS/ME missed, on average, more than half a day of school every week [seems low, and further evidence they are using an ultra-broad criteria inappropriately...Sonya Chowdhury was quoted on how many patients were much worse than this inc bedbound]


Dr Esther Crawley, senior report author and consultant paediatrician specialising in CFS/ME, said treatment for teenagers with the condition was effective but few had access to treatment in the UK [later adds " but research showed it could be successfully treated with cognitive behavioural therapy (CBT) in young people."]

"Children attending my specialist service only attend two days a week of school on average. This means that only the most severe cases are getting help" [though of course it may also mean the study is picking up Chronic fatigue more generally, and mecfs cases are making it ot the clinic]

Sonya Chowdhury, chief executive of Action for ME, said the study pointed to the need for more effective treatments.

"We know from contact with the parents of children with ME that this disabling condition impacts on every area of family life.

"The reality is that many young people miss considerably more than half a day of school a week, while for the most severely affected, their disabling symptoms are compounded by the isolation and loss that comes with being housebound and/or bedbound."

Bonus! Yuppie flu headline here too
'Yuppie flu' taking toll on teens | Western Daily Press
Lead author Dr Simon Collin added: "CFS is a very debilitating illness which has a huge impact on the lives of children and their families, and the results of our study underscore the need for further research into the causes of, and improved treatments for, paediatric CFS."
 
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K22

Messages
92
Let's see who speaks out that Crawley's persistent fatigue isn't CFS let alone M.E. Certainly nothing from AYME or AFME who go along that Crawley is studying CFs/ME. Will anyone make it clear that use of these broadest of umbrellas and conflating fatigue with complex illness isn't useful. Who will say that M.E entails more than persistent fatigue & explain what and that loose questionaire research on tired teens isn't bringing answers for people really ill & that not enough state funds are getting put in to help the sickest...
Conflating M.E with PF is as harmful as the press calling it derogatory names.
 

charles shepherd

Senior Member
Messages
2,239
Re Western Daily Press

INTENDED FOR PUBLICATION

Dear Sir

Re the headline to the news item in today's Western Daily Press covering children with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS):

http://www.westerndailypress.co.uk/Yuppie-flu-taking-toll-teens/story-28594735-detail/story.html

Yuppie flu is a derogatory and inaccurate description for the serious and debilitating neurological illness known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

The name was invented by journalists and has NEVER been used by the medical profession

And as you say in the news item, ME/CFS is an illness that was more common in children from poor homes with little practical or emotional support from their mothers

ME/CFS has no social class bias and has nothing to do with so-called yuppies

To comply with the press code of conduct on accuracy please take immediate steps to remove this appalling headline from your on-line news item and place a suitable correction and apology in the paper edition tomorrow

Yours
Dr Charles Shepherd

Medical Adviser, ME Association
7 Apollo Office Court
Radclive Road
Gawcott
Bucks MK18 4DF

Website: www.meassociation.org.uk

Not sure a pencil and paper exercise adds anything of value, apart from highighting that lots of school children have chronic fatigue.



Bonus! Yuppie flu headline here too
[URL='http://www.westerndailypress.co.uk/Yuppie-flu-taking-toll-teens/story-28594735-detail/story.html']'Yuppie flu' taking toll on teens | Western Daily Press
[/URL]
 

Denise

Senior Member
Messages
1,095
The press release (includes mention of AYME, Action for ME and other "interesting" notes to editors)
http://www.eurekalert.org/pub_releases/2016-01/uob-1i5012216.php

includes info on how to access a proof of the paper.

"The paper, 'Chronic Fatigue Syndrome at Age 16 Years' by Simon Collin et al is published today [Monday, Jan. 25, 2016] in Pediatrics, the official journal of the American Academy of Pediatrics. An advance proof of the paper can be downloaded here: https://fluff.bris.ac.uk/fluff/u3/indoh/m2jZ5k_4imurceZIJHdGRgVXL/"
 

charles shepherd

Senior Member
Messages
2,239
Re Western Daily Pres
INTENDED FOR PUBLICATION

Dear Sir

Re the headline to the news item in today's Western Daily Press covering children with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS):

http://www.westerndailypress.co.uk/Yuppie-flu-taking-toll-teens/story-28594735-detail/story.html

Yuppie flu is a derogatory and inaccurate description for the serious and debilitating neurological illness known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

The name was invented by journalists and has NEVER been used by the medical profession

And as you say in the news item, ME/CFS is an illness that was more common in children from poor homes with little practical or emotional support from their mothers

ME/CFS has no social class bias and has nothing to do with so-called yuppies

To comply with the press code of conduct on accuracy please take immediate steps to remove this appalling headline from your on-line news item and place a suitable correction and apology in the paper edition tomorrow

Yours
Dr Charles Shepherd

Medical Adviser, ME Association
7 Apollo Office Court
Radclive Road
Gawcott
Bucks MK18 4DF

Website: www.meassociation.org.uk

Rapid response from editorial at the Western Daily Press:
Hi there,


Thanks for your email.


‘Yuppie flu’ is a nickname that is used to referred to ME, hence it being used in the headline in inverted commas.


However we have taken your point that the headline has not reflected the story well enough and the headline has now been amended.


Thanks,


Philippa
 

Cheshire

Senior Member
Messages
1,129
How they "diagnosed" the patients:

We used data from parent- and child-completed questionnaires in a two-stage process to classify children as having CFS. In the first stage, parent-reported data were used to classify presence/absence of CFS using criteria similar to the definition of chronic disabling fatigue in children in this cohort at age 13 years.8 Parents received a “Your son/daughter 16+ years on” questionnaire (at median age 16.6, IQR 16.5 to 16.8 years) which included questions on whether their ‘teenager’ had been “feeling tired or felt she/he had no energy” over the last month (yes/no) and, if so: how long the tiredness/lack of energy had lasted (<3 months, between 3 and 5 months, between 6 months and 5 years, or >5 years); how many days (in the past year) their child had been off school/college because of tiredness/lack of energy; and whether the tiredness/lack of energy had prevented the child from taking part in hobbies, 6 sport or leisure activities (not at all; only a little; quite a lot; a great deal).

The questionnaire asked whether the parent thought that the tiredness/lack of energy was due to: i) illness; ii) problems with sleep; iii) playing a lot of sport; iv) stress or worry; v) other reason (free text question). We classified children as having CFS (by parental report) if they had fatigue lasting ≥6 months that had stopped them from taking part in activities “quite a lot” or “a great deal”, that was not due to playing too much sport, and that had resulted in any absence from school/college in the past year due to tiredness or lack of energy.

In the second stage, we used child-reported data to classify children as not having CFS if they had a Chalder Fatigue Questionnaire (CFQ)19 score below 19 (out of 33), including children who had been classified as having CFS by parental report, i.e. children classified as having CFS by parental report were re-classified as not having CFS. The CFQ was incorporated into a “Life of a 16+ teenager” questionnaire, which was completed by participants at age 16 (median 16.7, IQR 16.5 to 17.1) years. The CFQ asked about “problems you have had with feeling tired, weak or lacking in energy in the last month”. No data were collected from the child regarding duration of fatigue. A cut-off score of 19/33 has a sensitivity of 82.4% and a specificity of 86.4% for CFS in adolescence.20 Children were classified as having CFS if they met the criteria by parental report but CFQ data were missing, under the assumption that children with CFS would be less likely to have completed the “Life of a 16+ teenager” questionnaire. For the purpose of sensitivity analysis, we estimated the prevalence of CFS if all children with both CFS and depressive symptoms (SMFQ score ≥11) were recoded as not 7 having CFS, on the basis that chronic fatigue in these children might be secondary to depression.

Apart from the loosy and only criteria of fatigue, the fact that these people are "diagnosed" without even seeing a doctor, by self report of symptoms is just astonishing!!

This is just so stupid words fail me...
Even for the Fukuda criteria, it's always said CFS is a difficult diagnosis, you have to eliminate other diseases, and so on...
Have the rare tests recommended even by the BPS crew been ruled?

Disgraceful.
 
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sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Children were classified as having CFS if they met the criteria by parental report but CFQ data were missing, under the assumption that children with CFS would be less likely to have completed the “Life of a 16+ teenager” questionnaire.

Goodbye Monty Python, hello Esther Crawley. Can you imagine research into any other disease establishing patient eligibility on a "his mum said he's got it" basis?

It's a bad joke. And thanks to the 'Science' Media Centre this sort of garbage is reported nationwide as though it were actually science.
 

A.B.

Senior Member
Messages
3,780
We estimated the prevalence of CFS among those children for whom sufficient data were available to define this outcome. Performing only complete-case analyses (omitting children with any missing data) can result in bias, and will inflate standard errors compared to analyses with no missing data.

What, making assumptions about missing data is less biased than not making assumptions? Surreal.

And sure enough, their assumptions inflate the prevalence of CFS:

Multiple imputation to correct biases caused by missing data increased the overall prevalence estimates for CFS of ≥3 months’ duration from 2.02% (1.68%, 2.41%) to 2.50% (2.04%, 2.96%), and for CFS of ≥6 months’ duration from 1.46% (1.18%, 1.80%) to 1.86% (1.47%, 2.24%)
 
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K22

Messages
92
Crawley on twitter has a tweet along lines of "ME found in 1 in 50 teens". How does she get away with conflating this research type fatigue questionnaire conclusions with ME.? This type of thing happened in USA in the past. This is why some will argue that a collaborative approach as broad as this ,with these type of individuals can not work in the UK. How can we get ME understood and respected in this company? We are only taking dolly steps progress not the strides required because the BPS school go unchallenged undermining us left , right and centre. Also AFME are right there alongside them ,speaking as the largest national charity yet misusing the name ME with the worst of them & then declaring anyone who points out that ME isn't CFS or CF is being discriminatory - the cfs/me club is open to all fatigue. Been a bit tired lately?
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
The article is now online here
Chronic Fatigue Syndrome at Age 16 Years | Articles | Pediatrics

Abstract
BACKGROUND: In the Avon Longitudinal Study of Parents and Children (ALSPAC) birth cohort, chronic disabling fatigue lasting ≥6 months affected 1.3% of 13-year-olds, was equally common in boys and girls, and became more prevalent with increasing family adversity.

METHODS: ALSPAC data were used to estimate the prevalence of chronic fatigue syndrome (CFS) at age 16 years, defined by parental report of unexplained disabling fatigue lasting ≥6 months. We investigated gender and a composite 14-item family adversity index as risk factors. School absence data were obtained from the National Pupil Database. Multiple imputation was used to address bias caused by missing data.

RESULTS: The prevalence of CFS was 1.86% (95% confidence interval [CI]: 1.47 to 2.24). After excluding children with high levels of depressive symptoms, the prevalence was 0.60% (95% CI: 0.37 to 0.84). Authorized school absences were much higher (mean difference: 35.6 [95% CI: 26.4 to 44.9] half-day sessions per academic year) and reported depressive symptoms were much more likely (odds ratio [OR]: 11.0 [95% CI: 5.92 to 20.4]) in children with CFS than in those without CFS. Female gender (OR: 1.95 [95% CI: 1.33 to 2.86]) and family adversity (OR: 1.20 [95% CI: 1.01 to 1.42] per unit family adversity index) were also associated with CFS.

CONCLUSIONS: CFS affected 1.9% of 16-year-olds in a UK birth cohort and was positively associated with higher family adversity. Gender was a risk factor at age 16 years but not at age 13 years or in 16-year-olds without high levels of depressive symptoms.
Accepted November 16, 2015. Copyright © 2016 by the American Academy of Pediatrics
An advance proof of the paper can be downloaded here: https://fluff.bris.ac.uk/fluff/u3/indoh/m2jZ5k_4imurceZIJHdGRgVXL/"

I simply don't understand how parental reported chronic fatigue can be presented as mecfs, certainly the 1.9% prevalence figure claimed is not sound, given the methodology.​
 
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Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
With any other condition these researchers would have been able to obtain funding to do a proper study and actually investigate these cases clinically to get a more realistic estimate.

Alas, all we have is sloppy vague questionnaire based 'research'.