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Crawley: Natural course of CFS/ME in adolescents

Cheshire

Senior Member
Messages
1,129
Natural course of chronic fatigue syndrome/myalgic encephalomyelitis in adolescents

Tom Norris Simon M Collin Kate Tilling Roberto Nuevo Stephen A Stansfeld Jonathan AC Sterne Jon Heron Esther Crawley


Abstract

Objective Little is known about persistence of or recovery from chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adolescents. Previous studies have small sample sizes, short follow-up or have focused on fatigue rather than CFS/ME or, equivalently, chronic fatigue, which is disabling. This work aimed to describe the epidemiology and natural course of CFS/ME in adolescents aged 13–18 years.

Design Longitudinal follow-up of adolescents enrolled in the Avon Longitudinal Study of Parents and Children.

Setting Avon, UK.

Participants We identified adolescents who had disabling fatigue of >6 months duration without a known cause at ages 13, 16 and 18 years. We use the term ‘chronic disabling fatigue’ (CDF) because CFS/ME was not verified by clinical diagnosis. We used multiple imputation to obtain unbiased estimates of prevalence and persistence.

Results The estimated prevalence of CDF was 1.47% (95% CI 1.05% to 1.89%) at age 13, 2.22% (1.67% to 2.78%) at age 16 and 2.99% (2.24% to 3.75%) at age 18. Among adolescents with CDF of 6 months duration at 13 years 75.3% (64.0% to 86.6%) were not classified as such at age 16. Similar change was observed between 16 and 18 years (75.0% (62.8% to 87.2%)). Of those with CDF at age 13, 8.02% (0.61% to 15.4%) presented with CDF throughout the duration of adolescence.

Conclusions The prevalence of CDF lasting 6 months or longer (a proxy for clinically diagnosed CFS/ME) increases from 13 to 18 years. However, persistent CDF is rare in adolescents, with approximately 75% recovering after 2–3 years.

http://adc.bmj.com/content/early/2017/01/19/archdischild-2016-311198.full.pdf html


The problem of diagnostic criteria is still a burning question for this study. Althought claiming that they can't say they're studying "CFS/ME" in the text because children haven't been diagnosed by a physician but an entity they call CDF, the title and the text still refer constantly to CFS/ME. More muddling of the water...

And she still uses weakened NICE criteria:
The aim of this study was to describe the prevalence of CFS/ME at 18 years and the persistence and recovery of CFS/ME during adolescence. By defining persistent fatigue using a 6 months criterion, we aimed to compare persistence and recovery consistent with the widely used CDC diagnostic criteria for CFS/ME.7 ,16 However, results based on a 3-month criterion of fatigue duration, in line with the NICE diagnostic criteria, will also be presented in the online supplementary material. As children in our study were not examined by a physician, we have used the term ‘chronic disabling fatigue’ (CDF) rather than CFS/ME to indicate chronic fatigue that is disabling.
 
Messages
2,158
How does Crawley manage to push out so much "research"? The stream is relentless.

I suspect most of them are student projects which she simply puts her name to. Set them a meaningless task. Wait six months. If they haven't died of boredom or called your bluff, you will have another paper to publish.

If you have a large set of questionnaire data you can endlessly mine and p-hack for spurious and meaningless results and award MSc and PhD degrees on the results, and no ethics or understanding of what ME is, you can carry on for ever.

If you have tame editors of Psych journals willing to publish junk you can keep up an endless stream of dangerous drivel.

Easy.

:bang-head::bang-head::bang-head::bang-head::bang-head:

EDIT: This is one of the many reasons I'm opposed to MEGA.

Crawley is the ME 'expert' on it, and all it's promising at the moment is the collection of a vast set of questionnaire data on 12000 loosely defined chronic fatigue patients and to set up and store a biobank of samples from them. No plans yet to actually do biomedical research.

This would give Crawley enough questionnaire data to mess about with for the rest of her career... Doesn't bear thinking about.
 
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Messages
30
She is admitting she isn't actually studying children with verified ME/CFS, and yet she goes on to say she is studying ME/CFS. If we truly "know so little" about this illness how can we find a suitable proxy for it for use in research? Shouldn't we instead focus on researching people we know actually have the illness? Shouldn't that be the priority...?

How can you research the natural course of an illness if you are not actually researching that (or a related) illness?
 

Dolphin

Senior Member
Messages
17,567
We classified the following as not CDF: the tiredness or lack of energy had lasted for <6 months; the adolescent thought it was due to exercise or medication; the adolescent felt better after resting or if exercise did not make them feel exhausted the following day.
Frustrating. Feeling better after resting shouldn't be an exclusion.
 

Dolphin

Senior Member
Messages
17,567
One reason which would reduce patients been classified in the same category at age 13, 16 and 18 is that different methods of defining the condition at these time points were used.

Due to differential availability of relevant data at the three measurement occasions, the criteria used to classify adolescents as CDF were different at 13, 16 and 18. For example, classifications at 13 were based on parental report, with both parental and child-reported data used at 16, and exclusively childreported data at 18. We acknowledge the limitation of different reporting methods and that this may lead to slight inconsistencies in the prevalence estimates, with studies reporting differing prevalence estimates depending on whether report was done by parent or child or both.18 38
 

Dolphin

Senior Member
Messages
17,567
The main limitation of the study is that our classification is based on a combination of self-report of symptoms experienced by the adolescents and by parental report, with no diagnosis confirmed by a paediatrician. We therefore cannot rule out that other diagnoses could have been present that explained the fatigue. However, the exclusion criteria employed, including those on medication, those who reported having had problems with alcohol or drugs in the previous year or received a diagnosis of anorexia nervosa, means we are likely to have excluded such conditions.
 
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Dolphin

Senior Member
Messages
17,567
Finally, as we did not have data on whether the adolescents were receiving specialist treatment or not, we are unable to accurately define the ‘natural course’ of CDF during this period. However, data were collected before there was a specialist service available in Bristol, and therefore, it is unlikely that children received specialist treatment.
 

Dolphin

Senior Member
Messages
17,567
Table 1 shows that 29% of those classified with chronic disabling fatigue at 18 years had 4 or more of the CDC criteria.

Given the prevalence of chronic disabling fatigue at that age of 2.99%, that gives a prevalence for the Fukuda/CDC criteria of 0.8671%.

Note that one of the 8 CDC criteria was not assessed, so this would be an underestimate.

However the CDC criteria also look for a physician assessment to rule out other conditions.
We classified the following as not CDF: the tiredness or lack of energy had lasted for <6 months; the adolescent thought it was due to exercise or medication; the adolescent felt better after resting or if exercise did not make them feel exhausted the following day. The CIS-R also provided data on seven of the eight symptoms of CFS/ME specified in CDC diagnostic criteria, 7 namely muscle or joint pain, headaches, painful glands, sore throat, problems with memory or concentration (cognitive dysfunction) and insomnia (as a proxy for ‘unrefreshing sleep’). We required the presence of at least one of these symptoms, rather than the minimum of four required by CDC criteria, as this is consistent with UK guidance for the diagnosis of CFS/ ME. Adolescents were classified as not having CDF if they reported having had problems with alcohol or drugs (crack, solvents, heroin or cocaine) during the previous year or a diagnosis of anorexia nervosa.
 
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Dolphin

Senior Member
Messages
17,567
Of those who had both CDF at 18 years and available depression data, 40% (20/50) had depressive symptoms. If all those with any depressive symptoms during adolescence (13, 16 or 18 years) were recoded to non-CDF, the prevalence of CDF at 18 was 1.21% (95% CI 0.92% to 1.59%). This increased to 2.17% after imputation.

At all three time points, the presence of comorbid depressive symptoms was not an exclusion criteria for the classification of CDF, but sensitivity analyses excluding those with significant depressive symptoms (≥11 on the Short Moods and Feelings questionnaire (SMFQ))22 were conducted. The SMFQ correlates well with other measures of depression and has good test–retest reliability.23 24 A cut-off score of ≥11 was used to indicate high levels of depressive symptoms, a threshold that has shown high sensitivity, specificity and negative predictive power for an International Classification of Disease-10 diagnosis of depression at age 18 years in this cohort.25

I doubt all of these should be excluded as some people will have CFS and depression.
In comparison to the 40% figure, 19.5% in the non-chronic debilitating fatigue group had depression at age 18.
 

JohntheJack

Senior Member
Messages
198
Location
Swansea, UK
Table 1 shows that 29% of those classified with chronic disabling fatigue at 18 years had 4 or more of the CDC criteria.

Given the prevalence of chronic disabling fatigue at that age of 2.99%, that gives a prevalence for the Fukuda/CDC criteria of 0.8671%.

Note that one of the 8 CDC criteria was not assessed, so this would be an underestimate.

However the CDC criteria also look for a physician assessment to rule out other conditions.

I was struck by the 29% figure.

Note that they then go on to say:

Furthermore, as we have defined CDF using a 6-month criterion and adopted a number of exclusionary criteria used in the classification of CFS/ME, we have produced estimates that are comparable with the widely used CDC definition of CFS/ME, albeit with more relaxed criteria regarding the number of symptoms required to be present (one rather than four).

29% is, apparently, comparable.

The whole study is awful. Meaningless waste of time and money.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
This invention of CDF looks completely bonkers. The abstract makes no sense at all, so I am not bothering to look further. Presumably this is a tactic to avoid any criticism about this not being about ME/CFS. They make it clear that it is not about ME/CFS, but is. Simple, everyone should have thought of that before.
 

Kati

Patient in training
Messages
5,497
(Not a recommendation)

Natural Course of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis in Adolescents

Objective
Little is known about persistence of or recovery from chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adolescents.

Previous studies have small sample sizes, short follow-up or have focused on fatigue rather than CFS/ME or, equivalently, chronic fatigue, which is disabling. This work aimed to describe the epidemiology and natural course of CFS/ME in adolescents aged 13–18 years.

Design
Longitudinal follow-up of adolescents enrolled in the Avon Longitudinal Study of Parents and Children.


Setting

Avon, UK.

Participants

We identified adolescents who had disabling fatigue of >6 months duration without a known cause at ages 13, 16 and 18 years. We use the term 'chronic disabling fatigue' (CDF) because CFS/ME was not verified by clinical diagnosis. We used multiple imputation to obtain unbiased estimates of prevalence and persistence.

Results The estimated prevalence of CDF was 1.47% (95% CI 1.05% to 1.89%) at age 13, 2.22% (1.67% to 2.78%) at age 16 and 2.99% (2.24% to 3.75%) at age 18. Among adolescents with CDF of 6 months duration at 13 years 75.3% (64.0% to 86.6%) were not classified as such at age 16. Similar change was observed between 16 and 18 years (75.0% (62.8% to 87.2%)). Of those with CDF at age 13, 8.02% (0.61% to 15.4%) presented with CDF throughout the duration of adolescence.

Conclusions The prevalence of CDF lasting 6 months or longer (a proxy for clinically diagnosed CFS/ME) increases from 13 to 18 years. However, persistent CDF is rare in adolescents, with approximately 75% recovering after 2–3 years.


(Bolding mine)

Link to Medscape (you may need a free membership)
 
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