CHRONIC FATIGUE SYNDROME (CFS)
This section provides only an overview of ME/CFS and is
intended as a starting point to people who are unfamiliar
with the condition and its history.
Myalgic Encephalomyelitis (ME)
Chronic Fatigue Syndrome (CFS)
Post-Viral Fatigue Syndrome (PVFS)
Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)
are all names for a condition of uncertain cause(s) affecting
many thousands of people. All types of people at all ages
are affected. Severe and debilitating fatigue, painful muscles
and joints, disordered sleep, gastric disturbances, poor
memory and concentration are commonplace. In many cases,
onset is linked to a viral infection. Other triggers may
include an operation or an accident, although some people
experience a slow, insidious onset.
Effects
In some the effects may be minimal but in a large number,
lives are changed drastically: in the young, schooling and
higher education can be severely disrupted; in the working
population, employment becomes impossible for many. For
all, social life and family life become restricted and in
some cases severely strained. People may be housebound or
confined to bed for months or years.
Prognosis
Recovery is variable and unpredictable: some people may
recover completely, although it may take a number of months
or years; in the majority, recovery is only partial and
typically follows a slow course of variable improvement
and relapse; in a small but significant minority, the symptoms
become more severe as time proceeds.
Treatment
There is currently no accepted cure and no universally effective
treatment. Those treatments which have helped reduce particular
symptoms in some people have unfortunately proved ineffective
or even counterproductive in others. An early diagnosis
together with adequate rest during the acute phase and during
any relapse appear to bring the most significant improvement.
Controversy
ME/CFS has attracted more than its fair share of controversy.
Initially, and for many years, there was a debate as to
whether it was actually an illness at all. Although the
situation is still not perfect, many influential bodies,
(The World Health Organisation, the Department of Social
Security, the Department of Health, the Royal Colleges of
Physicians, Psychiatrists and General Practitioners amongst
them) are now in agreement that it is real. Two major questions
now occupy the minds of the people involved:
• What is it? and
• What's to be done about it?
Currently there are several views of precisely what causes
ME/CFS, and these have been loosely split into two schools
of thought: one which favours 'psychiatric' causes and the
other which argues 'physical' causes, although there is
also an argument which proposes that no such distinction
should be made. What also seems possible is that the illness
currently defined as 'Chronic Fatigue Syndrome' is actually
a number of different conditions, all characterised by similar
symptoms. (A 'syndrome' characterises an illness by its
symptoms, not by the underlying disease process.)
The second point , 'What's to be done about it?' attracts
equally heated debate. Until more information on what we're
having to deal with is forthcoming, there will remain a
wide range of views on how people can be helped. Research
into causes, treatment methods and cures continues, perhaps
a little more in earnest now that it has become a 'respectable'
condition to investigate. Treatment is often aimed at reducing
symptoms and so can encompass a range of 'mainstream' and
'complementary' methods, ranging through drugs, homoeopathy,
behavioural therapies, acupuncture, diet changes and beyond.
The Role of the ME Association
As research into the cause(s), effective treatments and
cures continues, The ME Association offers help and support
for all people in the UK who are affected by ME/CFS, while
also taking very active parts in the medical, welfare and
advocacy arenas.
Information Courtesy of ME Association:
4 Corringham Road
Stanford-le-Hope
Essex
SS17 0AH
Tel: 01375642466 (10.00am-12.3Opm, 1.30-4.00pm)
Fax: 01375 360256
Information Line: 01375 361013 1.30-4.00pm Monday to Friday
Listening Ear Service: Ring 01375 361013 after 4.00pm and
at weekends for details of Listeners on duty.
For Further information visit the website
www.meassociation.org.uk
Activity and Rest
Striking the correct balance between rest and activity -
both physical and mental, is one of the most difficult aspects
of coming to terms with ME/CFS. On one side of this equation
is the need to take an appropriate amount of rest and relaxation,
especially during the acute early stages and any subsequent
relapse. However, this has to be balanced by the need to
try and increase activity within individual limitations.
It is not easy achieving the correct mix of rest and activity,
particularly when you start to realise that although inactivity
brings considerable relief from many ME/CFS symptoms, it
can also lead to frustration and anger at not being able
to carry on with a normal way of life. Equally, just taking
relatively small amounts of physical exercise can cause
an exacerbation of symptoms, and this is very obvious when
too much activity on a ‘good day’ leads to post-exertional
malaise (to use medical jargon) the following morning. Finding
the correct balance - which is ‘rather like making
mayonnaise’ to quote one consultant-really comes down
to using up your daily energy quotient in a planned and
sensible manner.
The two most important variables which must be taken into
account when planning an
individual rest-activity programme are(a) what stage you
have reached in the illness and (b) how severely affected
you are.
Stage 1 - Acute ‘Toxic’ Phase
For anyone who fits the classic pattern of being perfectly
well, then falls ill with an infection, and from that point
onwards ‘fails to recover’ with all the characteristic
symptoms of ME/CFS, there is a strong case for having a
period of bed rest. This will need to be combined with slowly
increasing the amount of time spent out of bed sitting in
a chair or gradually mobilising yourself about the house.
Complete and prolonged bedrest should be avoided wherever
possible, but it may be required for the more severely affected.
Stage 2 - Partial Recovery
Whilst accepting that a small but significant minority will
make no recovery whatsoever after their initial triggering
infection, for those who do, a progressive step-by-step
approach is advised. The aim is to steadily increase both
physical and mental activities - something which used to
be known as convalescent, but is no longer fashionable as
a medical treatment. Depending on your rate of progress
during the following weeks and months, this might involve
short periods of bed rest in the morning and afternoon,
but try to ensure that any daytime sleeping is not then
interfering with your ability to have at least 5 or 6 hours
of good solid sleep that night. Any return to school or
work will need to be carried out in a -flexible and, if
at all possible, part-time manner. If such attempts are
clearly not being successful, then do not force yourself
on till you are heading back to square one again before
going off sick. Keeping a simple diary to monitor and regulate
progress can be very helpful at this stage.
Stage 3a - Variable Pattern of Disability
Unfortunately, this is the most common outcome after stage
2 - a return to a significantly reduced level of normal
functioning, which fluctuates, on a day-to-day and week-to-week
basis. On ‘good days’ you may function at up
to 60% or 70% of normal self on ‘bad days’ this
may fall to 20% to 30%. No matter how hard you try, it is
just not possible to break through the baffler - or ‘glass
ceiling’ -, which forms your upper limit. Anyone in
this category needs to establish a baseline of activity
at which they feel perfectly comfortable. For some, this
may actually mean a quite significant reduction in the amount
of activity being undertaken. From then on levels of activity
should be gradually and progressively increased, but do
not try to push yourself too far too soon or a relapse will
probably follow. Goals will need to be realistic and achievable,
and you will have to accept that progress may turn out to
be two steps up followed by one step down.
Stage 3b - Chronic and Severely Affected
For those who fail to make any real progress, a different
set of guidelines apply. Any increase in physical or mental
activity will have to be very tiny to begin with and help
from a sympathetic occupational therapist or physiotherapist
may be worth considering. In some cases a more structured
programme involving short amounts of activity, coupled with
adequate rest periods, may be worth trying. As already stated
total and prolonged bed rest should be avoided whenever
possible as this will inevitably lead to what is termed
deconditioning - a state of generally decreased body fitness,
which may also involve a loss of body calcium (predisposing
you to osteoporosis) and wasting or contractures in the
muscles.
Coping with a Relapse
At the first sign of a relapse or exacerbation of symptoms
- possibly due to an infection or too much activity - cut
right down on your amount of activity. If your symptoms
are predominantly ‘toxic’ in nature (e.g. raised
temperature, sore throat, enlarged glands), a short period
of bed rest is probably wise. This should then be followed
by a gradual return to previous activity levels. However,
it may take several weeks or months before you return to
previous levels of functioning.
What Sort of Physical Activities Are Advisable?
Gentle walking or swimming in a warm pool (check with your
local baths to see if the water is heated up on certain
days of the week; you could even qualify for admittance
to the hydrotherapy pool at your local hospital) are two
forms of exercise which are worth carrying out on a regular
basis. The buoyancy provided by warm water can be very helpful
for easing pains in the joints and muscles. You could also
consider adding some form of indoor activity such as the
gentle movement of Tai Chi and some types of yoga. Some
people find breathing exercises useful; they are also good
for relaxation. Head Office can supply details of a self-help
tape for beginners.
What Sort of Activity is Harmful?
Any type of sudden or intense physical activity will almost
certainly lead to exacerbation of symptoms or full-scale
relapse. So-called graded exercise regimes, which involve
a progressive increase in activity, regardless of how the
patient feels on a day-to-day basis, are NOT beneficial
in this condition.
What is Pacing?
This is a term used in the National Task Force Report to
describe the sort of general advice already given above.
You may find that pension and benefit providers will ask
for evidence from your GP that this has formed part of your
management plan.
Further In formation
• National Task Force Report on ME/CFS/PVFS, Sept.
1994 (pages 63/69 on Pacing). Available from:
Westcare, 155 Whiteladies Road, Clifton, Bristol 8S8 2RD
Tel: 0117 923 9341
Price: £6.95 (post and packing included).
• Living with ME (pages 141 - 147)
Dr Charles Shepherd, Cedar, 1992.
Jan.1997
Dr C Shepherd
Information Courtesy of ME Association
4 Corringham Road
Stanford-le-Hope, Essex
SS17 0AH
Tel: 01375642466 (lOam-12.3Opm, 1.30-4pm) Fax: 01375 360256
Email: enquires@meassociation.org.uk
Information Line: 01375 361013 1.30- 4pm Monday to Friday
Listening Ear Service: Ring 01375 361013 after 4 p.m. and
at weekends for details of Listeners on duty.
For Further information visit their website
MEA website www.meassociation.org.uk
