Peter May reports on clashes between consumers and scientists cfs
http://www.cmf.org.uk/helix/spr02/helix_19.pdf
A report to the Chief Medical Officer by an independent working party has considered best practice in managing Chronic Fatigue.
1 But the working party’s conclusions caused
six resignations from its committee. The four
medical specialists who resigned constituted the majority of the expert medical
members. The working party had used a ‘trident’ approach to evaluating the
medical evidence: trying to find consensus from research findings, considered
clinical opinion and patients’ anecdotal stories
What is in a name?
The report adopts the name CFS/ME as an interim title for the condition, while
an international USA-based group is currently looking for a more acceptable
title. The term ‘fatigue’, according to the report, provokes ‘strong loathing’
from sufferers, who do not consider it to be their main problem. Many consider
it demeaning yet it is the sine qua
non of the illness.
‘Myalgic’ is inappropriate, as muscle pain is not a significant feature for many patients. ‘Encephalomyelitis’, implying inflammation of the brain and spinal cord, is plainly incorrect.
There is no evidence for it. An acceptable title would remove unnecessary conflict that is present at the beginning of the important doctor/patient relationship.
Approaches to management
The working party identified three successful approaches to modifying the
condition that are offered on equal terms.
These are Cognitive Behavioural Therapy (CBT), Graded Exercise Programmes and Pacing.
There is now good documented trial evidence for the first two but none at all for the third.
2,3 A number of
clinicians advocate pacing as part of a ‘common sense’ approach to fatigue. Patients
and patient self-help groups also advocate it strongly.
Cognitive Behavioural Therapy (CBT)
Evidence is accumulating that CBT helps most patients. The core components of
this approach to CFS/ME include energy/activity management, establishing a
sleep routine, goal setting and psychological support. Three out of four
randomised, controlled trials found positive benefits. Few patients felt worse
though only a few reported complete recovery. However, some patients refuse
what they see to be a psychological treatment for what they perceive to be a physical
illness. They need to be encouraged to take a holistic view of
their illness, open to both physical and psychological interventions.
The lack of general availability of CBT is a cause for concern.
Graded Exercise
Based on the belief that CFS/ME is maintained, though not caused,by inactivity,
graded exercise seeks to offer a structured and supervised programme of gradual
and increasing aerobic activities such as swimming or walking. This is
initially based on the patient’s current
physical capacity. All three randomised controlled trials published so far
have found varying degrees of improvement. Very few participants reported
feeling worse, though patient surveys revealed more negative feedback for this
than any other form of treatment, including drug treatments.
Pacing
The principles and practice of pacing are described in the 1994 task force
report. 4 While some clinicians advocate pacing within a framework of graded
exercise, there lies within this approach an internal contradiction. The theory
behind pacing holds that the sufferer
only has a certain amount of available energy (physical, mental and emotional)
that is limited and finite. There is held to be a ‘glass ceiling’that the
patient cannot go beyond. Therefore, energy expenditure must be kept within
budget throughout the day, maintaining a careful
balance between expenditure and rest.
Critics maintain that if the patient is encouraged to believe that there is
only so much energy available, there is no scope for increasing the amount of
exercise. Bound by the conviction that their illness is essentially a physical
condition, patients with strongly held beliefs
about pacing are trapped into a lifestyle of persisting inactivity; this itself
perpetuates the fatigue.
Inactivity is held by many clinicians to be a root cause of continued symptoms.
Physical deconditioning has physiological consequences: muscle wasting, sleep
disturbance, balance problems, autonomic dysfunction and loss of confidence may
all result from it.
The Expert Patient?
Underlying the philosophy of the report is the view that patients should be
encouraged to be experts in their own right and should become key decision
makers in their own care. 5 Patients’ fixed beliefs, not open to evidence or
discussion, are not addressed in the report.
However worthy it is, the approach of regarding the patient as an expert
clearly would have limited usefulness in various other conditions. Patients are
not always in the best position to evaluate treatments objectively.
The report advocates the various ME self-help groups without drawing attention
to the dangers of prejudice and fixed beliefs propagated by some of these
organisations; not least in denying psychological factors, denigrating
psychotropic medications and promoting a rigid view of pacing. 6
Christians will welcome the working party’s approach of getting alongside and
listening to a group of patients who often feel alienated from orthodox medical
care and is vulnerable to alternative therapists’claims. They will be less
welcoming of recommendations that are not
soundly based in objective evidence, are undergirded by a new ‘political
correctness’ and may leave patients trapped in their illness by their own false
perceptions.
Peter May is a General Practitioner in Southampton
SPRING 02 TRIPLE HELIX 5
References
1. CFS/ME Working Group. Report to the Chief Medical Officer of an independent
working group. London: Department of Health, 2001 www.doh.gov.uk.cmo/
cBound by fsmereport/index.htm.
2. Bagnall AM, Whiting P, Sowden A, Wright K. Systematic review on the
effectiveness of interventions used in the treatment and management of chronic
fatigue syndrome/myalgic encephalomyelitis (ME) among adults and children.
University of York: The NHS Centre for Reviews and Dissemination, 2001
http://www.york.ac.uk/inst/crd/cfs.htm.
3. Whiting P, Bagnall AM, Sowden AJ, Cornell JE, Mulrow CD, Ramirez G.
Interventions for the treatment and management of chronic fatigue syndrome.
JAMA 2001; 286(11):1360-68.
4. National Task Force on Chronic Fatigue Syndrome, Post Viral Fatigue
Syndrome,
Myalgic Encephalomyelitis. Bristol: Westcare, 1994.
5. The Expert Patient – A new approach to chronic disease management for the
21st Century. London: Department of Health, 2001
6. CFS/ME Working Group. Op cit: section 4.3.2
Peter