Who are we?
The 25% ME Group is a unique
nationwide charitable organisation managed entirely by volunteers (most of whom
are severely affected by ME) and was set up to offer support services to those
severely affected by ME (Myalgic Encephalomyelitis), and their carers. The group
is also supported by two part-time admin staff. We provide a wide range of
services to people affected by severe ME many of whom are virtually housebound
and/or bedbound. (Please refer to the “About Us” section for more service
details and how to join the group).
What is severe
ME?
ME has been classified by the
World Health Organisation (ICD 10 G 93.3) as a neurological illness affecting
approximately 200,000 individuals within the UK. Of that number, approximately
25% of those affected will go on to develop severe ME which is an extremely
debilitatin*g illness, sometimes lasting for years, in some cases, even decades,
often rendering the sufferer completely housebound, wheelchair & bedbound and
dependent upon carers for their everyday needs. The Chief Medical Officer’s
Report on the subject of CFS/ME (Chronic Fatigue Syndrome/Myalgic
Encephalomyelitis) issued in January 2002 recognises that “CFS/ME should be
classed as a chronic condition with long term effects on health, alongside other
illnesses such as multiple sclerosis and motor neurone disease.”
To date there is no known
specific medical diagnostic test to determine or confirm a correct diagnosis nor
is there any specific treatment for this condition.
The varying symptoms experienced
by many severe ME sufferers may include:
visual problems ¨
vocal/muscular limitations ¨ general chronic weakness of limbs ¨ cognitive
problems such as memory loss & concentration difficulties ¨ problems with
balance and fine motor control ¨ muscle pain ¨ malaise ¨ hypersensitivity
¨ sleep & temperature disturbance ¨ cardiovascular symptoms ¨ digestive
disturbances ¨ neurological disturbances
What causes the
illness?
There has been much research
into this condition, and a variety of causes have been suggested (immunological,
endocrine, muscoskeletal, neurological etc) but no single factor has been
identified as the cause of this condition (which is known to affect all social
classes, ages and ethnic groups) although there is often a viral trigger,
probably associated with an enterovirus.
The condition affects the
central nervous system and the immune system, varying greatly in both severity
and duration of the illness for the sufferer. Since the symptoms experienced by
ME sufferers, are similar to other illnesses, such as; gastric disorders, MS,
fibromyalgia, this can delay a formal diagnosis being given.
The 25% ME Group do not offer
specific medical advice to individuals on what treatment(s) may or may not be
suitable to meet individual(s) needs. We as a group accept and recognise that
what works for some does not work for others.
We would also stress that any
advice or information which we are able to provide, should not be considered or
interpreted to mean that we support any one form of treatment, nor do we
advocate that any advice or information provided should be substituted for
information and/or guidance provided by your GP or any other medical
specialist.
The 25% ME Group promotes an
equal opportunities policy.
