Saturday, 12 May 2012

M.E. International Awareness Day


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

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.


  1. Thanks for this - I learnt a lot. x

  2. This is an interesting post Shoshi. I don't think I would have heard of this disease had I not had a good friend who suffered with it. Meg had a little girl, though she had to stay in bed for the whole of her pregnancy, who was the same age as one of my sons, so we met at a Mums and toddlers group and stayed in touch throughout their school days. At my boys birthday parties Meg would suddenly lose the thread of our conversation and Peter would immediately take her home, but later she had an elctric wheelchair which made her more mobile and independent. It is a very complex condition. I know she had no recognition from professionals for many years. I hope your post gives greater understanding to those who know little about M.E.
    I hope you have a good day.
    Kate x

  3. I found your blog through the Velvet Moth Studio and I too think Diana is a very talented lady. I was interested to see your post as I am also a sufferer of M.E. My symptoms have greatly improved over the last six years although they still rear their ugly head now and again. On an artistic note your zentangle art is beautiful.

  4. That was very enlightening-thank you!!

  5. Thank you for this incredibly informative post. I think you are a an amazing champion for M.E sufferers. Mo x

  6. Great post! It's so hard to explain 'I don't have a psychological disease' wihtouth sounding like you have a psychological disease! I also have M.E. - great to see you on here.

  7. I found your blog through looking at zentangle images on google and came across this section - BTW I love your hands tangle, it is just beautiful. I also have ME/CFS and although I have only been diagnosed for about 2 yrs, I have seen umpteen Neurologists for years whilst they were constantly looking for MS. They kept saying I had MS symptoms but not the disease - joy. Eventually I saw my Neuro who asked what my biggest issue was and I replied the tiredness, that I was tired of being tired and she sent me onto the dept who dealt with ME so after 10 years or more I eventually got my diagnosis. This condition is so under rated it is beyond not funny, doctors don't give it much credit and as a result neither do employers or job centres/ benefit agencies etc. I sometimes think if any of their family suffered with it then they might just have an inclination to change the way they think, but that is just me being bitter. Anyway I love your blog and your art. Debbie

  8. Thank you for your comment, Debbie. I have tried to find a way to reply but you do not appear to have a blog and I couldn't comment on your Google+ page, so I hope you return here to see my reply!

    I am sorry you have had such a rough ride on the journey to diagnosis, and I agree with everything you say. M.E. can be every bit as disabling, and even more so, than M.S. and it presents in many similar ways. I was also tested for M.S. If one's GP is not familiar with the illness, or is ignorant or mis-informed, he or she may be quite unsympathetic to one's plight and can block all avenues of help - the GP is the gateway to all available services. I believe the education of professionals is one of the most important aspects which needs addressing if M.E. patients are going to get a better service. I agree that a bit of inside knowledge goes a long way to changing the attitudes of the professionals!

    Thank you also for your lovely comments about my blog and my art. Both have been somewhat in abeyance for several months because of our house move, but hopefully soon I shall be up and running again, in my beautiful new ARTHaven studio.

    Hope you are as well as can be expected.



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