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| General information about ME/CFS |
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| (All of the opinions stated below are my own and are in no way supposed to be taken as absolutely "right".
However, they are based on personal experience and many years' knowledge of ME!!) |
The Basics
ME is an abbreviation for "Myalgic Encephalopathy", which translates as "problems
with muscles (myalgia) and with the nervous system" (encephalopathy).
No-one knows how long the disease has been around as diagnosis is so difficult. It is quite possible that people have suffered from
the disease for centuries, but have given it different names at different times. The disease is characterised
by severe muscle fatigue, muscle weakness, pain and a number of associated neurological problems such as problems with memory and concentration.
There is no fixed duration to the illness and most ME sufferers experience some improvement in symptoms within two years of onset. Most sufferers seem to
experience a fluctuating course of relapses and remissions with no obvious explanations. A small minority remain significantly disabled for many years.
Due to the huge range and severity of
symptoms experienced and the absence of any clear diagnostic test, doctors
remain unsure of how to deal with patients who present the mystifying symptoms of the disease (see "Dealing with doctors" for more).
Indeed those of us who have been unfortunate enough to have M.E.
have inevitably had to struggle hard to convince the medical establishment, including doctors
employed by the Benefits Agency, that we really are unwell (see "Dealing with employers" and "Dealing with the benefits issues").
One of the main problems in recognition of the disease is that most ME sufferers simply don't look that ill.
Apart from the unfortunate and rare instances when
ME is so bad that the sufferer needs a wheelchair to get around, there is no obvious visible sign that
the patient is feeling totally debilitated. In my experience the majority of people with the illness tend to
develop very determined and stoical personalities as a result of their experiences with ME.
Myths
The first myth that needs knocking on the head is that ME is caused by
depression. Yes, ME sufferers do get depressed (shock horror!),
but the situation is no worse than for sufferers of other chronic illnesses. ME is a real illness and it is important
not to let anyone try to convince you otherwise. If you are faced with disbelief then just remember
that the World Health Organisation recognises M.E. as "a disease of the
central nervous system" and the U.K. government has finally accepted that ME is a physical rather than a psychological illness.
The sceptical response to ME/CFS is a direct result of the misunderstandings surrounding the disease. Many ME sufferers reach an impasse
where they feel that there is nothing to be gained from trying to explain their condition to a prejudiced system. This is because
they are persistently confronted by the ignorance of professionals who are not prepared to understand the complexities
of the illness and all too easily cast the problem aside as mere "yuppie flu" or hypochondria.
In addition someone who is suffering from ME simply doesn't have the energy to constantly fight to convince people that
they are very ill. I have experienced at first hand the disbelief of GPs
who do indeed want to help but who find it easier to diagnose depression than look more carefully into the
patient's physical problems. It seems to me that this is a sad indictment of the over-burdened health system
rather than a direct fault of over-stressed and overworked GPs. A vicious circle
develops in which the medical profession and the public are none the wiser and
in which ME sufferers become progressively more frustrated and isolated!
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| Is ME the same as Chronic Fatigue Syndrome? |
The simple answer to this is "Yes", but there has been a great deal of debate over the nomenclature of the disease.
Many doctors did not like the original term "Myalgic Encephalomyelitis" because they felt, perhaps justifiably, that it did not accurately describe the problem
as there had been no direct evidence to support inflammation of the brain (the myelitis part of the term).
Only very recently has there been a concerted change
from "Encephalomyelitis" to "Encephalopathy", a term which those in the know believe more accurately reflects the fact that there are a number of
general central nervous system abnormalities seen in patients.
For many health professionals Chronic Fatigue Syndrome (CFS) is the prefered term. This is because, in their opinion, it makes no assumption about what they see as unmeasurable abnormalities in muscle or nervous tissue.
CFS is effectively a compromise, because whilst it makes no specific predictions on the severity of symptoms and prognosis (which is all but impossible in ME/CFS anyway)
it does at least recognise that patients have a genuine illness. A more specific term such as ME is rarely used (in my experience).
I think that this situation has arisen because the health services are not prepared (or simply cannot afford!) to put in the resources required to study each individual
case of ME/CFS. This would involve a thorough analysis of a whole host of physiological abnormalities, which is impractical in a cash-strapped health service.
Generally speaking, unless you are lucky enough to be one of a chosen few to be
selected for clinical research into ME/CFS then you are likely to remain in the dark as to what exactly is wrong with your body. Clearly this is an unsatisfactory
situation for anyone suffering from a long-term illness and is a strong argument for resources being focussed upon finding what exactly causes the disease
so that appropriate treatments can be developed.
What is Post Viral Fatigue Syndrome (PVFS)?
For a long-time in the early years of my illness I was using the term "Post-Viral Fatigue Syndrome", mainly because I believed I had had a virus and that I was in the process
of recovering from it. In essence I thought that I would be better within 6 months. I think that this term, PVFS, is appropriate in the early stages, because it is quite possible that
you have had a bout of a particularly nasty bug and that it will take you a few months to recover anyway. ME/CFS is different, I believe, because it lasts for over 6 months and may last for a lot longer
than that. Therefore, if you have been ill for longer than 6 months then you have much more of a case for convincing your GP that you have more than just PVFS.
What term should I use?
In my experience people who suffer from the disease tend to use the phrase "ME" because they feel that it is taken a lot more seriously than
"Chronic Fatigue Syndrome" or PVFS. It is easy to imagine how the latter term could be perceived as simply sleep deprivation, burn-out or even laziness, particularly by those
people who already doubt the existence of the disease! The use of CFS to describe all illnesses that have unexplained fatigue as a symptom has the potentially
damaging effect of grouping together long-term ME sufferes with people who are only temporarily debilitated,
perhaps as a result of a viral illness, depression or excessive stress. I have come up against this barrier myself and avoid using the term altogether to avoid feeding prejudices.
Having said that, as far as disability, employment or benefits issues are concerned there is little difference in the terms used to describe the disease. It is worth bearing in mind, however, that
doctors connected with the state benefits systems or with employers, who after all have their paymasters interests at heart and not yours, may prefer to use the term which implicitly minimises
the disabling effects of the disease.
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