Today, 12th May, is M.E. International Awareness Day. Those who read, or follow, my blog, will be aware that I suffer from this disease. I don’t usually write a lot about it because there are other things that I prefer to write about, and I do not want this illness to define me, but it is a major part of my life, and the disability that results from it affects everything I do, and limits greatly what I am able to do. It has forced me to re-think many of my priorities and adjust my way of life to make room for it, and it has had a profound effect on my family. I have been very fortunate that for most of the time since I have been ill, I have been treated well and taken seriously by the professionals responsible for my care, but this is far from the experience of many, which is why I am writing this.
I thought I would take this opportunity today, to join the M.E. community worldwide in helping publish the facts about the illness, and to try and dispel some of the myths and downright lies.
First of all, the disease itself, Myalgic Encephalomyelitis, is a complex neurological disorder, categorised by the World Health Organisation as a neurological condition, along with Multiple Sclerosis and Epilepsy, in their International Classification of Diseases (ICD), under the number ICD-10 G93.3. The rule is that no condition can appear in two different classifications, so if it is classified as a neurological condition, it cannot also be classified as psychiatric.
The symptoms of the disease are many and varied, making diagnosis difficult, but certainly not impossible – with the right training and experience, a diagnosis can be relatively simple as long as the correct diagnostic criteria are used, which exclude other, unrelated conditions. Symptoms can affect every system in the body – central and peripheral nervous system, autonomic nervous system, endocrine (hormonal) system, digestive system, immune system, cardiovascular system – to name a few. Sufferers from M.E. have cognitive difficulties (brain fog, short term memory problems, etc.) and can suffer from depression and emotional lability, sleep problems (unrefreshing sleep, interrupted sleep, disrupted sleep patterns sometimes resulting in a complete diurnal reversal so the sufferer sleeps all day and is awake all night, very vivid and disturbing dreams), and many digestive problems, including IBS, reflux, and food and chemical intolerances. One of the main symptoms is an overwhelming and pervasive exhaustion made worse by the slightest exertion; in addition to this base-line, ongoing fatigue, one of the key diagnostic features of the disease is “post-exertional malaise” – with an onset maybe several days after the activity, and lasting proportionately very much longer and with greater severity than the fatigue suffered by normal people after overdoing things. Overdoing things for a person with M.E. may be something as simple as preparing (or even eating!) a meal, or having a telephone conversation, or getting dressed. This is not just tiredness as experienced by the normal population but something quite different and much more extreme. There is also the extreme and rapid fatigability of muscles and lack of stamina, causing muscular pain after the smallest exertion, which can also cause post-exertional malaise. This, and associated joint pain, can lead to quite severe disability, which can be helped by the use of mobility aids.
These are just a few of the problems experienced by M.E. sufferers. It is certainly not an exclusive list! The severity of the illness varies from person to person, and from time to time in an individual. It can range from a mild form where an individual may be able to hold down a job, but have little energy in reserve for domestic or social activities outside work, to an individual being completely bed-bound, sometimes for many years, unable to tolerate light or sound, in constant and agonising pain, and having to be tube-fed because they are unable to feed themselves.
There is a move to “re-brand” this illness as “Chronic Fatigue Syndrome.” (This is one reason why the condition is now often known as “ME/CFS,” to try and avoid confusion, but in my opinion, it just adds to the confusion!) This, to most of the M.E. community, is to downgrade the condition to something more trivial. There is much more to the disease than simply being tired all the time. Chronic fatigue is not the same as “Chronic Fatigue Syndrome,” but merely one of many symptoms of the illness. Chronic fatigue may also be a feature of several other conditions, such as Multiple Sclerosis, Cancer, Rheumatoid Arthritis, Depression, AIDS, Hypothyroidism, Anaemia, or post-viral flop.
There is no treatment. It is more a question of management – most people with M.E. agree that the only sensible way to manage the condition is by pacing – short periods of activity interspersed with numerous rest periods, and the breaking down of tasks into small, manageable chunks, and the planning of one’s days to allow for unavoidable periods of more extended activity by factoring in rest periods, and the ability to say “No!” even if one wants to do as much as one can! Pushing oneself to do more each day, to increase one’s activity level (as in the government’s recommended “Graded Exercise Therapy”) is extremely counter-productive for someone with M.E., and can actually be dangerous, leading to serious relapse or even, in some cases, death. “Living within one’s energy envelope” by pacing, is the only option available if one is to remain stable, or to make small improvements.
There are many physical markers detectable in individuals with M.E., with the right testing, but these tests are not normally made available. In the UK, no public funds are devoted to biomedical research, which is carried out by charitable organisations and dedicated physicians and researchers who sacrifice a great deal to enter an area of work which is often despised by the majority of the medical and scientific establishment, and which does not attract research grants. Even today, approximately 50 percent of doctors still fail to recognise that the illness exists at all, and there are many horror-stories of people being sectioned under the Mental Health Act, and children being forcibly removed from the care of their parents and placed in psychiatric institutions.
This scandalous state of affairs is not helped by the political background to this disease. You would not think that politics should come into the diagnosis and treatment of any disease, or the attitudes of physicians and other professionals to their unfortunate patients, who suffer enough from the condition itself without having to bear the brunt of deliberately engineered political dogma designed to denigrate the condition and drive funds away from proper research, education of professionals, and provision of much-needed help for sufferers and their families.
Despite the huge body of evidence to the contrary, the general consensus among the decision-makers, especially in the UK, is that the basis of the illness is psychiatric – if not in the initial cause, then in the perpetuation of the condition. This means that government monies are being directed towards a psychological paradigm and away from the biomedical approach, with the result that patients are short-changed in every way, and frequently not taken seriously, or treated with the dignity and respect that every patient has the right to expect. Many are refused access to mobility aids and benefits.
The majority of M.E. charities in this country receive no government funding, and are keen to educate the medical and associated professions, the government, the media and the general public about the truth of the matter, and to try and promote this “poor relation” to the status of being taken seriously, to the extent that decent funds are made available to research the cause, treatment and ultimate cure for this terrible disease, which appears to be on the increase.
For more information on the illness, and the scandalous political ramifications, a good place to start is the excellent charity Invest in M.E. whose website is at www.investinme.org.
Thank you for reading this. We must become more aware, in order to ease the plight of many thousands of sufferers and their families, in this country and around the world. This problem is not going to go away; new sufferers are coming online all the time, and although some people may go into spontaneous remission or enjoy some improvement, most go on to suffer for many years. It is no respecter of persons; you or one of your family members may be next.