Living with M.E. (Myalgic Encephalomyelitis)

Living with M.E. (Myalgic Encephalomyelitis)

Good to know's article featuring Viv Jones, Vice-Chair of ME North East Branch ('ME isn't all doom and gloom', www.goodtoknow.co.uk, 14 May 2009), who has been diagnosed with M.E. (Myalgic Encephalomyelitis) after Glandular Fever and Coxsackie viruses, makes a valuable contribution to increasing knowledge about and raising public awareness of this dreadfully disabling neurological illness during the week dedicated to it, though some may think that she paints a somewhat rosier picture than most long-term M.E. sufferers experience. The Good to Know Forum is a welcome opportunity to exchange these experiences with fellow sufferers, as well as other readers interested in learning more.

The onset of M.E. varies amongst sufferers and appears to be, sometimes, sudden, at others, gradual. Furthermore, the range of symptoms affects people with different levels of severity. For example, this Research Psychologist who, apart from a clear medical history, had Viral Pneumonia three months before being diagnosed with M.E. in 1988 and Glandular Fever (Epstein-Barr Virus), in 1977, while doing his PhD. Amongst other childhood illnesses, I can recall having Chicken Pox, often thought to be a precursor of both Shingles (Herpes Virus) and M.E. and I also had the "sugar cubes" Polio Vaccine which, with others, is suspected as a possible cause of M.E. What else is there in my - and other M.E. sufferers' backgrounds - that we don't remember, or even know about, which may be significant in bringing about a better understanding of this dreadfully disabling illness which may, in turn, lead to a cure?

This is why biomedical research is so essential to understand the pathogenesis of M.E. and what better time for those of us affected to share our experiences, for everyone's benefit, than M.E. Awareness week (10 - 16 May) 2009. This is why Action for ME's "Faces of ME" Campaign is such a great initiative. I recommend as many as can manage to visit http://www.afme.org.uk/news.asp?newsid=534 to tell their stories and read others.

There's a way to go yet. This illness is often invisible because you only ever see an M.E. sufferer when they have enough energy to leave the house and you never see the most severely affected 25% who are either housebound or bedridden. Rather than admit ignorance people will often say that M.E. doesn't exist at all, is a psychiatric illness, or is just laziness, attention-seeking, or a bit of tiredness.

Rather than admit ignorance, or helplessness, there is a tradition, amongst both doctors and patients, of denial and of soldiering on, in defiance of pain which, experience shows, frequently turns out to be the worst thing to do.

As well as improving knowledge about and public perception of M.E., it is essential to jettison some myths, once and for all, which are hampering progress towards a cure.

From the focus on Viv, readers will see how inaccurate is that old chestnut 'Yuppie flu". M.E. affects both sexes, all age groups and social classes all over the world. Furthermore, if you think of the duration of a bad bout of flu, from take off, as an Easy Jet or RyanAir short hop, M.E. is a long haul flight which, most often, never lands.

Other myths that need dispelling are that M.E. is a psychiatric illness, attention-seeking, laziness or just a bit of tiredness.

Although it is possible to have a psychiatric illness, in addition to M.E., there is no evidence of a greater incidence of a psychiatric history or concurrent psychiatric illness amongst M.E. sufferers than in the general population; nor is one a prerequisite for the other.

Those who still think that M.E. is an excuse for laziness may ponder how smart a move this might be: Get a piece of paper and put down, on the credit side, how much income you will have to depend on while ill. This is often less than £5,000 per annum or £100 per week (incidentally, less than the National Minimum Wage for a 40-hour week, or what teenagers get for doing paper rounds and odd jobs). Now, compare this with loss of salary, for even an average earner, before you start considering highly paid professionals. This is quite apart from the other factors, which are not measurable in financial terms but should go down on the debit side of your balance sheet: social isolation, dependency, loneliness, shattered relationships - the list goes on - in addition to the disabling painful physical symptoms of the illness itself.

Now consider that, if M.E. is just chronic fatigue, as is often erroneously believed, instead of being an extremely disabling neurological illness, having a range of symptoms including muscle pain, poor concentration and dizziness, since being diagnosed 21 years ago, I should have had enough sleep with (*check my figures, 21 x 365.25 [leap years, remember] x 8) = *61,362 hours. It hasn't worked so far. M.E. really is a great deal more than just tiredness and needs to be treated as such.

M.E. is a discrete neurological illness, named in the 1950s,recognised by the world Health Organisation in 1969, for which there is an abundance of evidence. There is, as yet, no cure. The best medical attention any M.E, sufferer can have, as I have had, is the support of a good GP for symptom relief, such as pain or difficulty sleeping or whatever you have. There is no evidence that anything else -- orthodox, complementary or radical -- works. Cognitive Behaviour Therapy (CBT) has no enduring benefit for people with M.E.; Graded Exercise Treatment (GET) makes a majority worse, sometimes irrecoverably so and you'd be better to keep your money in your pocket than invest in any of the others. The best agreed common sense plan is pacing, which is really doing as much as you can manage without overdoing things and then resting or sleeping as required. But, it does require some discipline to stop when you know you should --- I'm the World's worst for not practising what I preach!

I am neither an optimist nor a pessimist; I'm a realist. I think it is best to recognise where we are and have a determination to improve things. I do believe that it is only a matter of time before we do get that test --- maybe a blood test or a scan -- just as they did for illnesses like MS, which were once written off or dumped in the psychiatrists dustbin --- but it's never going to be soon enough for those people whose lives have been devastated by this extremely disabling neurological illness, which is so much more than mere tiredness and needs to be recognised as such.

To do their bit towards M.E. Awareness Week (10 - 16 May 2009) and beyond, carers, relatives and friends of M.E. sufferers, who are housebound or not so mobile, may like to download, print off and hand deliver some of the stunning eye-catching posters, designed by fellow sufferer Joss Morton for maximum display all over the country. You can download the posters directly here http://www.mefreeforall.org/fileadmin/PDFs/ME_Awareness_Posters_2009.p df or contact info@mefreeforall.org

Thank you, again, Good to Know, for providing this comforting and educational forum

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org
www.mefreeforall.org