The ME Association in the UK runs an annual ME Awareness Week campaign to raise awareness of this invisible yet very real physical disease. Campaigns to get ME recognised as a severe neurological illness are consistently pushed by the association, which provides essential information and self-help support for ME. The ME Association also raises funds for biomedical research into the physical nature and causes of ME under Charity Registration No. 801279. This year, they have already raised a total of £1,672.98 with an additional £275.75 in gift aid.
This year’s campaign for ME Awareness Week is Go Blue for ME 2018. It is aimed at encouraging more people to Go Blue to help people acknowledge and understand what ME is, what people who have it go through, and what current issues revolve around the disease.The week-long campaign runs from Monday, 7th May, to Sunday, 13th May this year. You can participate by going blue in a variety of ways both physical and virtual, by running your own ME campaign, or by promoting #GoBLUE4ME on social media and sharing free printable ME leaflets wherever you can.
ME – better known as myalgic encephalomyelitis and also as myalgic encephalopathy, is a complex and severe neurological disease with a sudden onset, often after a heavy trauma. It has a wide range of disabling symptoms and involves multiple body systems. The World Health Organisation (WHO) recognises ME as a neurological disease. Still, many doctors lack the knowledge and/or experience to diagnose ME early enough – if at all – to provide the much needed treatment that can at least alleviate its chronic symptoms. There is as yet no cure for ME.
ME is a particularly difficult illness to diagnose, mostly because it has no established biomarker. In addition, it involves different systems in the body and is connected with many symptoms that are also present in other conditions such as heart disease and thyroid imbalances. Since it can be triggered in more than one family member, ME may have genetic factors that predispose individuals to the disease, although there is no definitive indicator as of now.
As far as it has been successfully diagnosed in the UK, ME is known to affect around 250,000 people. It does not discriminate between social class or ethnic group. ME affects a broad age range, from children to the elderly, but most sufferers are between the ages of 20-40 years. ME is not a prevalent disease, but it is currently the most common cause of long-term absence from school due to sickness. ME also impacts the rate of absence from work in adults. Every year, £3.3 billion is spent in the UK on ME.
ME can cause serious functional impairment – more than many other severe medical conditions like multiple sclerosis and cancer. It is a crushing multisystem disease marked by significant abnormalities in the central nervous system, endocrine (hormone producing) system, immune system, and muscle that causes energy metabolism impairment. Other systems are also involved in the disease process. ME can be moderate to severe, and around 25% of people with ME are so severely affected that they are home-bound and can only get around in wheelchairs, or even bed-bound and unable to mobilise, sometimes requiring tube-feeding. The illness progresses in various stages with the severity of symptoms at any stage fluctuating in form and intensity from day to day, week-to-week and over longer periods of time. ME is therefore a very unpredictable illness with serious effects. In the most severe cases, seizures, speech and swallowing difficulties, and extreme intolerance to light and sound are present. People with severe cases of ME require 24/7 care.
ME is triggered by a viral infection that the sufferer has seemed unable to recover from, or in some cases a vaccination or other triggering event such as a very stressful life event. ME shares symptoms with many other conditions and can therefore only be ideally diagnosed after 3-4 months. In some cases, it takes up to 6 months after the triggering event, although some have reported waiting up to a full year before being diagnosed.
Diagnosing ME is no simple matter. Doctors must conduct a careful assessment of clinical history first. then a thorough physical examination. Other possible causes of symptoms must be excluded, and the diagnostic criteria for ME must be applied. There are no blood tests or other diagnostic tests available at this point in time that can definitively diagnose ME. Post-exertional malaise is a unique and defining clinical feature of the illness, which can help in the diagnosis. Some features of the illness can make diagnosis difficult, however. For instance, people with ME can also experience a delayed exacerbation of symptoms – or an increase of symptom severity over time after exertion. This physical or mental exertion can be very minor, and combined with the delayed response, can be especially difficult to pinpoint and connect with ME.
ME is often connected with chronic fatigue syndrome, or CFS. Both ME and CFS are characterised by debilitating effects and general tiredness and malaise. However, reviews of ME over the past few decades have shown that putting ME and CFS together may not be appropriate.
ME has also been associated with post-viral fatigue syndrome, or PVFS. The onset of both ME and PVFS can be traced back to a viral infection. PVFS is only accepted in medical circles, however, as a temporary description for people experiencing extended periods of ill health following acute infections where a diagnosis of ME is not yet appropriate. Moreover, ME can also be triggered by a non-physical life event, not exclusively a viral infection.
It is interesting to note as well that the term myalgic encephalomyelitis itself may not be appropriate. Encephalomyelitis is an inflammation of the brain and spinal cord that is usually caused by an acute viral infection. This is not an accurate or definitive explanation for what may be happening in the nervous system in people with ME. Encephalopathy, however, may be a better descriptive term. This is a general term that means brain disease, damage, or significant disorder of brain function. The major symptom of encephalopathy is an altered mental state. This is present in ME in the form of cognitive impairment – short-term memory loss, poor concentration, short attention span, etc. Encephalopathy can furthermore be caused by metabolic problems, toxins, anoxia, physiologic changes, trauma, drugs, and more, in addition to infections. ME research literature reports various abnormalities in autonomic, cognitive and hypothalamic functions as well as in cerebral perfusion, which correspond to ME.
Living with ME
The forms of ME symptom vary in different individuals, and their severity can fluctuate at different points in a day, week, month and even over the course of an entire year. However, people with ME generally suffer from flu-like symptoms including muscle pain (myalgia) and migraine-like headaches coupled with sometimes profound fatigue that is not substantially alleviated by rest. In connection, they also often experience unrefreshing sleep and malaise after even light mental or physical exertion. ME causes them to suddenly be unable to engage in the same level of educational, occupational, social, or personal activities as they were before. They often experience some degree of cognitive impairment and/or orthostatic intolerance, or a lowered blood pressure when standing up.
It is difficult to accurately summarise this complex illness, but in short, ME causes people to feel overly tired all the time and leaves them unable to cope with what is considered as normal levels of common activity. People with ME wrestle with regular, daily activity such as going to school or working. This is compounded by a constant fear that they will lose the stability that schooling or a job can provide them, and the stress of uncertainty that this ultimately brings. Moreover, the loss of education in younger sufferers affects their ability to be engaged in gainful employment almost as much as the disease itself.
ME requires a higher level of care, and those who suffer from it require more rest. Today, even healthy individuals struggle with getting adequate rest. With the added burden of self-care in ME sufferers without a support system plus the chronic fatigue associated with the illness, it is much more difficult for them to achieve quality rest.
Support someone with ME today to help them attain higher quality of life. Donate funds through the ME Association for ME research and support campaigns, or give gift items to help people with ME get better sleep to alleviate discomfort and help them get much needed quality rest. If you are not currently able to donate more, giving someone with ME even a small gift like a pack of relaxation foot pads can help them find relief from back pain, migraines, fatigue and stress as well as improving blood circulation and sleep quality while promoting the removal of toxins from the body. A simple gesture can go a long way!