Myalgic Encephalomyelitis (M.E.), also known as Chronic Fatigue Syndrome (CFS)., a debilitating blight on the body of a person who has it.
It exhausts the person's system with headaches; disturbed sleep patterns; sensitivity to noise, light and changes in temperature; reactions to food and environmental factors; concentration problems; nausea; dizziness; digestive disturbances; sore throats; muscle and joint pain; in various combinations and severity which often produce, unsurprisingly, a reactive malaise or depression.
Many groups and individuals are trying to keep the condition in public consciousness during International M.E. Awareness Week 8th–14th May.
In 2004 the Department of Health ring-fenced £8.5 million to fund new specialist services for M.E. sufferers around the U.K.
The illness is coming out of a haze of almost medieval attitudes. It is as though its long history and its internationality has made it open to so many approaches that different definitions abound and different names. Myalgic Encephalomyelitis (nearly always shortened to M.E.), is synonymous with Chronic Fatigue Syndrome (CFS) and the name of the illness is frequently dubbed M.E./CFS.
Ute Elliott, Chair of Sheffield M.E. Group, explains, "Many people seem to think that M.E. is 'just' about feeling tired, but it can actually result in a huge range of devastating symptoms from chronic pain to severe allergies."
Even though recognised by the World Health Organisation as a neurological disorder and even though the Report of the Chief Medical Officer for England in 2002 concluded that M.E./CFS is a genuine and disabling condition, there is a residue of disbelief among medical practitioners and the public in the U.K. Called "yuppy flu" in the 1980s, when a wide rash of cases among the U.K.'s young-upwardly-mobile people or "yuppies" gave the illness a foppish legacy, it seemed only the young and economically-privileged could aspire to it and that it was a convenient excuse for not turning up for work, or simple, immature attention-seeking.
On top of this, there are no test-tube procedures to pinpoint the disease and no absolute distinction between the ranges of fatigue and symptoms which occur in M.E./CFS and many other illnesses.
The U.K. lacks accepted, diagnostic criteria for M.E./CFS. Although the National Institute for Health and Clinical Excellence (NICE) is taking evidence, it will not publish its guidelines until 2007. Meanwhile, GPs and clinicians have to go on a diagnosis of exclusion. Blood tests are used to rule out exotic, tropical, or other diseases; then the assumption is made that the patient has M.E./CFS.
A conservative estimate of the number of people with M.E./CFS in the U.K. is a quarter of a million. 25,000 of these are young people and 25 percent of individuals with the sickness are unable to look after themselves.
There is no one pharmaceutical therapy for the whole illness, but pain, sleep disturbances and allergic symptoms can be treated with the usual chemicals and healings.
The best recoveries have been found in "pacing" and Cognitive Behaviour Therapy (CBT).
Pacing is a way of taking one step at a time. A balance is metered between activity and tranquillity.
Starting the day can be a trial after waking with bruising muscle pain, like having been hit all over the body through the night with claw hammers. So, getting out of bed into the kitchen to pull something from a cupboard and calmly digest, stretch one's resources. The next quarter or half hour is put aside for relaxation, meditation or soothing unchallenging time. This plotting of small exhaustions with small rests has been the most appropriate remedy for M.E./CFS at all its different stages from mild to severe. It requires cutting down on previously doable, often enjoyable, activities. This is dispiriting at the best of times and especially if the individual has been physically fit and active before the onset of the illness.
It can be more discouraging when, feeling they are on an upturn in energy levels after being practically bed-bound for days or weeks, the person becomes even more debilitated after re-potting a house plant. Or some overlooked ingredient in a new food wipes out weeks or months of slow, careful and painstaking recovery.
CBT takes a pragmatic approach to a person's attitude to what is happening to them. It helps people accept their lot in life.
CBT helps the sufferer come to terms with what they are now able to do and calm down from the excessive stimulation usually experienced when pursuing success. New goals are set without the inner drives or external measures which can often move people to strive in unrealistic ways.
It can also help with the boredom experienced during enforced rest or those times when even reading a book is hurtful, never mind the TV glare and over-the-top sound of day-to-day music or radio.
With climate change most of us can feel we can do our bit to make things better: get a composter, walk instead of using a car and buy local produce. For people with M.E./CFS recovery is more to do with not doing things—like switching the body's from standby to off when not in use. Mostly it is experienced in isolation and sometimes with no one to believe them.
It seems climate change and M.E./CFS will affect the planet and its human population for a long time.
As climate change cracks the ice caps and scientists admit they do not know its exact origin or future course, so people with M.E./CFS struggle with debilitating changes in their bodies' abilities while doctors and specialists labour with reasons, definitions and solutions.
Sheffield M.E. Group has a social event on Saturday 14 May at 2pm at the Centre in the Park, Norfolk Heritage Park, (Guildford Avenue entrance) in Sheffield.
Sources: Sheffield M.E. Group Tel. (0114) 292 2311, e-mail info@sheffieldMEgroup.co.uk www.SheffieldMEgroup.co.uk Other useful contacts: Action for M.E. www.afme.org.uk 01749 670799 www.a4me.org.uk (for young people); The M.E. Association www.meassociation.org.uk 08704441835 www.ayme.org.uk (under 25s) M-F 10 – 2 0845 123 2389
Feeds