CFS -Internet-based CBT for Adolescents

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THE LANCET

Internet-based CBT for

adolescents with chronic

fatigue syndrome

Tom Kindlon a

Three of the four thresholds used by Sanne

Nijhof and colleagues (April 14, p 1412)1 for

their post-hoc definition of recovery from

chronic fatigue syndrome are virtually the

same as the entry criteria.

For example, 40 or more on the fatigue

severity subscale of the checklist individual

strength 20 (CIS-20) was equivalent to

“severe fatigue” at baseline, yet once a

participant scored less than 40 (the mean

+2 SDs for a healthy population) they could

be counted as recovered!

The face validity of their other post-hoc

recovery definition, listed in the appendix,

seems stronger, but it gives a much lower

figure for recovery of 36% (rather than

63%).

The cognitive behavioural therapy (CBT)

intervention used encourages individuals to

see themselves as “ex-patients”.2 This

alone might have coloured the individuals'

assessment as “fully recovered”.

Indeed the figures in table 4 show that the

controls who had “recovered” were

numerically, although not statistically,

better on the three indices than were those

on internet-based CBT.

It would have been interesting if Nijhof and

colleagues had reported the recovered

groups' actometer readings: previous

research has shown that self-reported

improvements after CBT have not translated

into significant improvements in objectively

measured activity levels3 or cognitive

function.4

Three of the four measures that make up

the recovery definitions are self-reported

and thus subject to reporting biases.

Attendance at school is an objective

measure, although again the cutoff for “full

school attendance” (=10% school absence)

is questionable and students might have

foregone extracurricular activities to attend

school.5

Furthermore, attendance does not mean

that participants' academic performance

was in accordance with their abilities.5

I work in a voluntary (unpaid) capacity for

the Irish ME/CFS Association.

References

1 Nijhof SL, Bleijenberg G, Uiterwaal CSPM,

Kimpen JLL, van de Putte EM. Effectiveness

of internet-based cognitive behavioural

treatment for adolescents with chronic

fatigue syndrome (FITNET): a randomised

controlled trial. Lancet 2012; 379:

1412-1418. Summary | Full Text |

PDF(143KB) | CrossRef | PubMed

2 Bleijenberg G, Prins J, Bazelmans E.

Cognitive behavioral therapies. In:

LA, Fennel PA, RR, eds. Handbook of

chronic fatigue syndrome. Hoboken: Wiley

and Sons, 2003: 493-526.

3 Kindlon T. Reporting of harms associated

with graded exercise therapy and cognitive

behavioural therapy in myalgic

encephalomyelitis/chronic fatigue syndrome.

Bull IACFS/ME 2011; 19: 59-111. PubMed

4 Knoop H, Prins JB, Stulemeijer M, van der

Meer JW, Bleijenberg G. The effect of

cognitive behaviour therapy for chronic

fatigue syndrome on self-reported cognitive

impairments and neuropsychological test

performance. J Neurol Neurosurg Psychiatry

2007; 78: 434-446. CrossRef | PubMed

5 Van Hoof ELS, De Becker PJ, Lapp C, De

Meirleir KL. How do adolescents with chronic

fatigue syndrome perceive their social

environment? A quantitative study. Bull

IACFS/ME 2009; 17: 16-31. PubMed

a Irish ME/CFS Association, PO Box 3075,

Dublin 2, Ireland

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http://bit.ly/To2zYh

Internet-based CBT for

adolescents with chronic

fatigue syndrome

Joan Crawford a

Sanne Nijhof and colleagues1 claim that,

after their FITNET intervention, 63% and

36% of the participants with chronic fatigue

syndrome (CFS) were classified as

“recovered” as defined by scores of within 2

SD and 1 SD, respectively, of the healthy

population.

Data from a questionnaire measuring

self-rated improvement were also used.

However, are such criteria valid?

Nijhof and colleagues previously published

data from a comparable group of

adolescents (n=144, mean age 15·3 years

[sD 0·6], 79% female) who did not have a

chronic illness and who were not currently

under treatment.2

A t test comparing this group and the

“recovered” CFS group (at 12 months)

shows that the recovered group had similar

fatigue levels but significantly worse results

(p<0·05) on school attendance and on the

“physical functioning” subscale of the child

health questionnaire than did the controls.

CFS can have a relapsing-remitting course:

some patients self-report recovery, only for

the condition to return.3 Further

longitudinal data are required to show that

the recovered FITNET patients did not

subsequently have a return of their

symptoms and disability.

A key feature of CFS is that exertion brings

on a range of symptoms;4 those affected

tend to engage in little high-intensity

activity to avoid such effects.5

Information from actigraphy is essential to

ascertain whether the recovered CFS

patients are truly well or if they have

adapted their lives and are engaging in less

high-intensity activity (such as sports and

dancing) than their healthy peers.

I declare that I have no conflicts of interest.

References

1 Nijhof SL, Bleijenberg G, Uiterwaal CSPM,

Kimpen JLL, van de Putte EM. Effectiveness

of internet-based cognitive behavioural

treatment for adolescents with chronic

fatigue syndrome (FITNET): a randomised

controlled trial. Lancet 2012; 379:

1412-1418. Summary | Full Text |

PDF(143KB) | CrossRef | PubMed

2 Nijhof SL, Maijer K, Bleijenberg G, Uiterwaal

CS, Kimpen JL, van de Putte EM. Adolescent

chronic fatigue syndrome: prevalence,

incidence, and morbidity. Pediatrics 2011;

127: e1169-e1175. CrossRef | PubMed

3 Reyes M, Dobbin JG, Nisenbaum R, Subedar

N, Randall B, Reeves WC. Chronic fatigue

syndrome progression and self-defined

recovery: evidence from the CDC

surveillance system. J Chronic Fatigue

Syndr 1999; 5: 17-27. PubMed

4 VanNess JM, s SR, Bateman L,

Stiles TL, Snell CR. Postexertional malaise in

women with chronic fatigue syndrome. J

Womens Health 2010; 19: 239-244. PubMed

5 Newton JL, Pairman J, Hallsworth K,

S, Plötz T, Trenell MI. Physical activity

intensity but not sedentary activity is

reduced in chronic fatigue syndrome and is

associated with autonomic regulation. QJM

2011; 104: 681-687. PubMed

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Internet-based CBT for

adolescents with chronic fatigue

syndrome — Authors' reply

Sanne L Nijhof a, Gijs Bleijenberg b, Cuno

SPM Uiterwaal c, Jan LL Kimpen a, Elise M

van de Putte a

Tom Kindlon questions the definition of

recovery, arguing that entry criteria can be

virtually the same as recovery criteria.

Our baseline data1 show very severely

fatigued and impaired adolescents, not even

close to the cutoff points for recovery.

We determined normal ranges on the basis of

our own sample of healthy peers, which is a

control group that is healthier than

average: all children with a medical or

mental disorder were excluded.2

Theoretically, a patient might only change

from -2·1 SD at inclusion to -1·9 SD after

treatment, but analyses showed that not a

single case merely “crossed the border”.

We agree that cognitive behavioural therapy

finally encourages individuals to see

themselves as “ex-patients”, but

maintenance of this self-reported

improvement 6 months after the end of

treatment suggests that this is the

patient's own and lasting reflection.

We regard school attendance as a major

indication for recovery, and this outcome

measure was validated through external

assessment of school attendance.

Kindlon and Joan Crawford both suggest use

of actigraphy as an objective outcome

measure.

Our actigraphic data aided the therapist in

tailoring the intervention. Patients with low

activity need a different approach from

patients with fluctuating activity.

The goal of our treatment was reduction of

fatigue and increase in school attendance,

not increase in physical activity per se.

Actual physical activity as measured by

actigraphy is not likely to be the mediator

of reduction in fatigue.3

We do agree with Crawford that the cutoff

point of -2 SD for recovery is arbitrary and

no standardised criteria exist to define

recovery of adolescents with chronic

fatigue syndrome. In the appendix, we

showed results with -1 SD cutoff points.

Although this obviously changed the

proportion of patients classed as recovered,

it did not change our findings with regard to

the relative effect of FITNET compared with

care as usual, and therefore it does not

alter our main conclusions.

Further longitudinal data are required to

determine the tenacity of the initial

treatment effect. A paper describing the

long-term follow-up results is currently in

preparation. This will address Crawford's

concerns about future relapses after initial

recovery.

We declare that we have no conflicts of

interest.

References

1 Nijhof SL, Bleijenberg G, Uiterwaal CSPM,

Kimpen JLL, van de Putte EM. Effectiveness

of internet-based cognitive behavioural

treatment for adolescents with chronic

fatigue syndrome (FITNET): a randomised

controlled trial. Lancet 2012; 379:

1412-1418. Summary | Full Text |

PDF(143KB) | CrossRef | PubMed

2 Nijhof SL, Maijer K, Bleijenberg G, Uiterwaal

CS, Kimpen JL, van de Putte EM. Adolescent

chronic fatigue syndrome: prevalence,

incidence, and morbidity. Pediatrics 2011;

127: e1169-e1175. CrossRef | PubMed

3 Wiborg JF, Knoop H, Stulemeijer M, Prins

JB, Bleijenberg G. How does cognitive

behaviour therapy reduce fatigue in

patients with chronic fatigue syndrome?

The role of physical activity. Psychol Med

2010; 40: 1281-1287. CrossRef | PubMed