What is Myalgic Encephalomyelitis?
Known by the medical profession as Chronic
Fatigue Syndrome (CFS), it is a very
debilitating syndrome (group of symptoms)
which often follows a viral infection such as
summer flu or glandular fever. GPs may refer to
this as PVFS in the early stages.
Other factors which may trigger the illness are
traumas or stresses such as accidents, surgery,
bereavement, other infections, contact with
chemicals such as organophosphate pesticides.
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It is a debilitating neurological illness and is
extremely variable in its effects from person
to person, hour to hour, day to day
It affects millions worldwide
Relapses are common after overexertion,
stress or infections
PWME may look well, but feel very ill
It can affect men, women and children
A long fluctuating course distinguishes
ME/CFS from other fatigue states.
How does it begin?
Suddenly, often following an infection or
gradually, with no easily identifiable source
Diagnosis
Currently there are no definitive tests to determine
or confirm the diagnosis. GPs will carry out a range
of routine tests to eliminate other illnesses which
can mimic ME/CFS symptoms.
In the absence of alternative diagnoses and the
presence of a characteristic symptom pattern
ME/CFS may be diagnosed.
N.B. Other, testable and treatable conditions may
occur alongside ME/CFS, so all new symptoms
should be investigated. It is dangerous to assume
that all symptoms are attributable to ME/CFS.
What are the symptoms?
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Profound exhaustion, both physical and
mental, induced or exacerbated by minor
exertion
Flu-like malaise or like hangover
Facial pallor
Extreme muscle fatigue and pain
Gastric problems, including food allergies
and irritable bowel (IBS)
Intolerance of alcohol - thought diagnostic
Memory and concentration problems
Difficulty finding words when talking
Painful joints – usually without swelling
Headaches
Disordered sleep patterns and unrefreshing
sleep. Sleep reversal is common.
Problems with balance and clumsiness
Postural hypotension when first standing or
standing still for long periods (POTS)
Cold hands and feet due to poor circulation
Poor temperature control and inability to
cope with extreme climatic changes
Hypersensitivity to light, sound and smells
Emotional lability/mood swings.
How long may it last?
Most people are confined to bed from time to
time. Others are permanently bedridden or
housebound. Some are less severely affected,
with fewer restrictions to their lives.
For many people with PWME the return to
health takes many years, involving a long struggle
for themselves, their carers and families.
The sooner a diagnosis is made and correct advice
given the better the chances of recovery.
Treatment
Currently there is no known cure for ME/CFS
and medical treatment is restricted to alleviation
of symptoms, e.g. pain, digestive and sleep
problems.
PWME generally react badly to most
medications so these should first be prescribed
at very low dosage then gradually increased to
find the tolerance level.
Antidepressants
ME/CFS is not the same as, nor caused by
clinical depression, although the two conditions
may occur together. If so the depression needs
to be treated.
PWME often react badly to antidepressants but
LOW DOSE amitriptyline (a tricyclic
antidepressant similar to antihistamine) can be
useful as a sedative to help with sleep problems
and muscle pain.
Management of ME/CFS
Early diagnosis and advice on management will aid
recovery and reduce the risk of long-term illness.
Resting energy expenditure is high in PWME so
that available for physical and mental activity is
low.
The best strategy is pacing activities and
avoiding stress, which can exacerbate and
perpetuate symptoms. Activities should be
switched between muscle groups and between
mental and physical activities.
Who are we and how can we help you?
Established over 25 years ago, the Shropshire
ME Group is run by ME/CFS sufferers and
their carers for the benefit of fellow sufferers
and carers.
We aim to provide information* about the
illness and mutual support for members by
means of:
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a monthly newsletter (except January)
a website www.shropshiremegroup.org.uk
for access to a wealth of relevant resources
and information on ME/CFS
a private/closed Facebook Group
a free library of around 50 books on
ME/CFS (some just for fun) plus a similar
number of CDs and DVDs of our and other
important conferences
informal local group meetings where fellow
sufferers can exchange ideas and gain
mutual support.
medical conference with visiting speakers
most years
telephone, email and penpal contact
between members - especially valuable for
the less mobile
occasional fund-raising events to support
Group activities and for much-needed
medical research
for legal reasons we are not able to give
advice, but are able to put members in touch
with statutory and other bodies who can advise
on Benefits, etc.
Shropshire ME Group offers many points of
contact with about 160 fellow-sufferers and
their carers. As a member you can meet and
discuss your situation with others who
understand exactly how you feel. We can
supply you with valuable information about
your illness, and where to find an empathetic
GP.
Shropshire ME Group
(S.M.E.G.)
Registered Charity number 1072171
www.shropshiremegroup.org.uk
Newsletters keep readers informed of the latest
research into causes and management of
ME/CFS and the success or otherwise of local
and national lobbying to improve services and
statutory benefits available to PWME. The
Newsletters also contain details of local
meetings and social events organised for
members and their family/carers.
Join your local ME Group
- and learn to understand your illness.
ME/CFS is still treated with disbelief by many
of the general public and some in the medical
profession. PWME lose many former friends
who cannot understand why sufferers cannot
participate in former activities. So ME/CFS can
be very isolating, especially if close family and
friends are sceptical.
PWME are not alone. There are a quarter
million other sufferers in the UK. Nearly 160
are members of SMEG – your local self-help
group.
Ask your GP to refer you to the local CFS/ME
Service, which our support group helped
establish with Shropshire Enablement Team,
which runs the service.
We are a self-help support group for those
affected by Myalgic Encephalomyelitis (ME),
Chronic Fatigue Syndrome (CFS) or Post Viral
Fatigue Syndrome (PVFS). We refer to these as
PWME (person/people with ME.)
For membership information:
Maralyn Hepworth
Tel. 07516401097
Email - maralyn4@googlemail.com
Monica Dalby
114 Sundorne Road,
Shrewsbury, SY1 4RR
Email - dalby.50@gmail.com
Annual Membership: £5 a year.