Transcript Submission to the Parliamentary Group into ME/CFS

Submission to the
Parliamentary Group into
ME/CFS
Professor Trudie Chalder,
King’s College London
Aims



To describe a model of understanding
CFS
To review the evidence for CBT
To suggest future research ideas
Introduction



CFS/ME is a heterogeneous disorder
And what starts it may not be what
perpetuates it
….or causes disability
Definition of Cognitive
Behavioural Therapy (CBT)



CBT is an active, collaborative,
structured, time limited, common
sense, individualised problem solving
approach for a range of conditions
It is based on theory
It addresses the way thoughts and
behaviours affect physiological and
emotional processes and vice versa
Cognitive Behavioural Model

Physiological and emotional
responses (symptoms)
Cognitive response
(thoughts/beliefs and images)
Behavioural response

Environmental factors


We already know that CBT works
for:








Chronic Pain
Chronic Diseases i.e rheumatoid arthritis
Cancer (fatigue, distress)
Irritable Bowel Syndrome
Anxiety disorders
Depression
Eating disorders
PTSD
to name but a few
Myths



CBT is only used for anxiety or
depression
If you get better with CBT your problem
was “all in the mind”
CBT only works if a person is depressed
or anxious (In CFS its more the
opposite!)
Pilot study

32 patients referred to the NHNN (Queen
Square) accepted the offer of treatment



(Butler et al 1991)
6 had severe disability being confined to
wheelchair or bed most or all of the time
We adapted treatment used in chronic pain
and our aim was to improve fatigue and
functioning
About ¾ improved significantly
CBT for CFS (RCT’s)

3 high quality studies carried out by
independent research groups (King’s,
Oxford & Nijmegen) showed that
individual CBT improved fatigue &
physical functioning
(Sharpe et al BMJ 1996; Deale et al Am J Psych
1997: Prins et al Lancet 2001)
Long term outcome of CBT v
relaxation for CFS: a 5 year
follow up (Deale et al 2001)

Setting:
Design:
Patients:
Results:

Conclusions:



Medical out patient clinic
Longitudinal follow up
53/60 patients who took part in RCT
24% who received CBT were
completely recovered; 71% of those
who received any CBT rated
themselves as much better; 18% of
those receiving relaxation were much
better.
CBT produces long term benefits but
some waning of effects at 5
years. Booster sessions would help
maintain gains
Does it work in “real life”?
(Chalder et al)




Setting:
Treatment:
Patients:
Results:
General Hospital fatigue clinic
Routine practice
293 patients with CFS
58% rated themselves as
very/much or much better; 26%
were a little better; 16% were the
same or worse on global
outcome, fatigue and social
adjustment

Conclusions:
It works in real life settings, not just
clinical trials
Prevention of Chronic Fatigue in Glandular
Fever Candy et al 2005
CASES OF FATIGUE
100
90
% who are fatigue case
80
70
Baseline
60
3 months
6 months
50
40
30
20
10
0
T reated group (%)
Control group (%)
CBT for CFS in adolescents


2 RCT’s carried out independently in
Holland and London
Both demonstrate improvements in
fatigue and increase likelihood of
returning to school
Psycho-educational intervention for
Cancer related fatigue
Three one hour sessions over 9-12 weeks
 Session 1:
Assessment
 Session 2:
Activity planning
Sleep management
 Session 3:
Increasing activity
Dealing with negative
thoughts
Cancer related fatigue (RCT)
MFI global fatigue
100
90
Mean scores
80
70
60
50
40
30
20
10
0
T1
T2
T3 *
Time
Linear regression at T3 (Corrected for T1)
B = -15.9, 95% CI = -30.2, -1.7, P = 0.030
T4
Conclusions




CBT is an effective rehabilitation
strategy for CFS/ME
It is cost effective
It requires skilled therapists – much of
what passes as “CBT” isn’t
It does not mean that CFS/ME is all in
the mind
Future Research




Now need to focus on the severely affected
Need to develop and evaluate interventions
for fatigue in work settings to reduce
likelihood of fatigue developing into chronic
disorder
Need to carry out large trial of CBT for
adolescents to examine effects outside of
specialist centres
Why does CBT work? What biological changes
occur as a result of CBT – eg neuroendocrine,
fMRI, PET