This week (9th-15th) is Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Awareness Week in the UK. However, Australia, America and other countries do not have an officially recognized equivalent and in Australia only the
M.E/CFS Society of NSW have taken the initiative and launched their own campaign. M.E/CFS is a debilitating medical condition that involves central nervous system dysfunction resulting in neurological problems, muscle pain and severe persistent, recurring exhaustion that cannot be relieved by rest. Many sufferers have their quality of life significantly diminished and 80% are unable to work or attend school. Only 4% will fully recover and 39% will improve after four years
The precise
cause for M.E/CFS is not currently known, though research is making significant inroads to finding it. "Published studies continue to demonstrate that the basis lies in abnormalities of the central nervous system and immune system." There is also evidence to suggest that it can be triggered by viral infections such as glandular fever, viral meningitis, viral hepatitis, and less commonly infection with bacteria, or other organisms like Q fever. In rare cases vaccinations and toxins in the environment can also be triggers.
Once the condition has been triggered it is still very difficult to diagnose due to the nature of the illness and that no tests exist. Doctors need to pay careful attention to the patient's medical history and consider all displayed symptoms. A series of blood tests can be made to rule out various other diseases, and then certain symptoms must be present and have been reoccuring for at least six months. Firstly,
"Clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset, is not the result of ongoing exertion, is not substantially alleviated by rest and results in a substantial reduction in previous levels of functioning."
Secondly, the concurrent occurrence of four or more of the following symptoms:
"Substantial impairment of short-term memory or concentration, sore throat, tender lymph nodes, muscle pain, multi-joint pain without redness or swelling, headaches of a new type, pattern or severity, unrefreshing sleep, post exertional malaise lasting more than 24 hours."
Information on additional symptoms can be found here, here and here.
Although the symptoms must be present for at least six months, it is important that treatment begin as soon as possible, so doctors should give a conditional diagnosis that is to be confirmed at six months, by this time a diagnosis must be confirmed or ruled out, however this only happens in 25% of cases.
There is no cure and no definite treatment as research is still in its infancy but there are a wide variety of them. The most popular, a reportedly most successful, one involves the patient "pacing" themselves to avoid the boom and bust cycle where patients over-extend themselves and relapse - to the point where they are unable to do anything. Patients will learn to spot when an activity is about to exhaust them and stop and rest for a few hours. Alternating mental and physical activity is another important component of the treatment. Depending on the severity of the condition, what constitutes "activity" may range from sitting up in bed for a few minutes to walking around the block. It is commonly accepted that you should not expend more than 75% of available energy each day. Graded exercise is another treatment, but has been proved to be ineffective or even counter-productive for the overwhelming majority of patients. Cognitive Behaviour Therapy is another treatment strategy that may be helpful. Patients can also be prescribed low doses of anti-depressants to help with painful joints and muscles, nerve pain, sleep disturbance and anxiety
One of the problems with M.E/CFS, and something that separates it from other conditions, is that it is wildly unpredictable. Not only do symptoms and the effectiveness of different treatments differ between patients, the severity of each individual's case fluctuates from day to day.
"It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute... It's quite possible that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room."
"You feel like you're doing better, push yourself a little too far or even just get a cold, and then with almost no warning you're back at square one... if I'm having a bad day it's hard to not see these four walls as my cage."
"On bad days it can be hard work just lifting a spoon to your mouth... My legs ache continuously; the muscles twitch and jump. I start off walking quite well but soon my legs grow heavier until they can't straighten under my weight."
A Functional Ability Scale is used to determine the severity and functionality of the patient at any given time - and how the patient should behave at each point on the scale.
It has been thought by some, including a large number of medical professionals, that M.E/CFS is a psychological disorder (a British journalist even branded it as "an excuse for young people to say up late on the Internet texting friends". It has also been called "yuppie flu"), but this is a myth. In the words of Harvard University professor Dr. Anthony Komaroff:
"In summary, there is now considerable evidence of an underlying biological process in most patients (which) is inconsistent with the hypothesis that (the illness) involves symptoms that are only imagined or amplified because of underlying psychiatric distress. It is time to put that hypothesis to rest."
M.E/CFS can cause psychological problems in sufferers, many of these are for obvious reasons - if you had a condition like this that was incurable, unpredictable, and left you unable to live your life to the full, would you be particularly happy about it? Many are downright traumatised at the beginning of their condition - isolated, abandoned, lonely, afraid, and frustrated. That coupled with the public misunderstanding and disbelief, including that of friends, family and employers. The dysfunctional CNS can also lead to medical mental illness in some cases.
In the USA, M.E/CFS costs the economy a staggering $9 billion each year in lost productivity, this does not include healthcare benefits. A quarter of sufferers cannot work at all and the rest will lose a third of their income - a significant amount when you factor in treatment costs.
M.E/CFS affects over 134000 Australians and 800000 American adults but awareness of the condition is still astonishingly low, even in the medical profession. It is absolutely vital that awareness be increased for two important reasons:
Firstly, there is a very strong link between the length of time taken to diagnose the illness, and the severity and length of recovery. 27% of severe cases were diagnosed within a year compared with 54% of moderate or mild cases. Patients can also be given harmful medical advice and have reduced chances at gaining much needed government benefits. For this reason the recommendation is six months, but only 25% of cases meet this, some take up to six years. 90% of cases are not properly diagnosed, often because M.E/CFS is difficult to diagnose and GPs simply do not have the training - not helped by the fact that 42% do not believe it is a physical illness, even though the myth that it is psychological has been comprehensively disproved.
Secondly, public misunderstanding and disbelief concerning M.E/CFS leads to frustration, stress and depression for the patient, with a number of cases resulting in suicide. As a result they lose friends and strain family relationships, causing feelings of isolation and anxiety. This must be addressed.
Awareness must be increased, medical training must be improved, research must be funded and greater media attention must be given.
To do this, as well as providing support and services for sufferers, charities and researchers need donations from the public, corporations and government grants. There is a long, hard road to go before the cause is even pinpointed, let alone an effective treatment or cure. This worthy cause is one worth making your wallets a little lighter for; many more people are affected worldwide than were affected by the tsunami, for which millions worldwide gave generously. I implore you to give whatever you can - all donations are tax deductible so think about what you can afford to give and then double it.
If you are in Australia you can donate online here.
UK: here and here.
US: here.
You can also buy Leigh Hatcher's book "I'm Not Crazy, I'm Just a Little Unwell", presumably part proceeds will go to Australian M.E/CFS charities.