ME Awareness Week is an annual effort of the ME Association in the UK to raise awareness of this invisible but very real physical disease. The Association aggressively campaigns to get ME recognised as a severe neurological illness by providing essential information and self-help support, and raising funds under Charity Registration No. 801279 for biomedical research into the physical nature and causes of ME. So far this year, they have raised a total of £1,672.98 and have received pledges for £275.75 in gift aid.
Go Blue for ME 2018 is this year’s campaign for ME Awareness Week, aimed at encouraging more people to Go Blue to help people acknowledge and understand what ME is, what it does to people who have it, and what the current issues revolving around it are.The campaign runs this year from Monday, 7th May, to Sunday, 13th May. You can participate by going blue, running an ME campaign of your own, or simply promoting #GoBLUE4ME on social media and sharing free printable ME leaflets.
What is ME?
ME (myalgic encephalopathy or myalgic encephalomyelitis) is a severe and complex sudden-onset neurological disease. It involves multiple body systems and has a wide range of disabling symptoms. The World Health Organisation (WHO) recognises ME as a neurological disease, but many doctors still lack the experience and/or knowledge to properly diagnose ME, or to diagnose it early enough to provide much needed treatment to alleviate its chronic symptoms.
ME is particularly difficult to diagnose because it has no established biomarker, involves different systems in the body and has many symptoms that are also present in other conditions. This disease may have genetic factors that predispose individuals to the disease since it can be triggered in more than one family member. As far as it has been successfully diagnosed in the UK, it affects around 250,000 people from all social classes and ethnic groups. ME strikes a broad age range, from children to the elderly although most sufferers are aged from 20-40 years. ME does not affect a large percentage of the population, but it is the most common cause of long-term absence from school due to sickness, and also impacts absence from work in adults. £3.3 billion is spent each year in the UK on ME.
As a severe neurological disease, ME can cause serious functional impairment. For comparison, many other medical conditions such as multiple sclerosis and cancer do not reach this level of impairment. ME is a devastating multisystem disease marked by significant abnormalities in the central nervous system, immune system, endocrine (hormone producing) system, and in muscle (causing energy metabolism impairment), among other systems involved in the disease process.
ME can be moderate to severe, with around 25% of people so severely affected that they are confined to their homes and sometimes their beds, often requiring a wheelchair although some are not even able to make use of one. The disease comes in various stages and the severity of symptoms can fluctuate throughout the day and over longer periods of time. The symptoms themselves can vary, making ME a very unpredictable illness. In the most severe cases, sufferers can experience seizures, speech and swallowing difficulties, and extreme intolerance to light and sound, requiring continuous 24-hour care and sometimes tube-feeding.
ME is triggered by a previous viral infection and in some cases a vaccination or other triggering event. Because its symptoms are shared by many other conditions, ME is ideally diagnosed only after 3-4 months - in some cases 6 months - after the triggering event. A careful assessment of clinical history is first conducted. Then a thorough physical examination is done to exclude other possible causes of symptoms and to apply the diagnostic criteria. No blood tests or other diagnostic tests are as yet available to definitively diagnose ME. The illness has a unique and defining clinical feature, however, known as post-exertional malaise. Sufferers will experience a delayed exacerbation of symptoms following even minor physical or mental exertion - or an increase of symptom severity over time after such exertion.
ME and CFS
ME is often associated with chronic fatigue syndrome, or CFS, because of its debilitating effects and the general tiredness and malaise generally experienced by sufferers. However, recent reviews of ME have suggested that the pairing of ME and CFS may be inappropriate. ME has also been connected to post-viral fatigue syndrome, or PVFS, because the onset of both can be traced back to a viral infection. PVFS is only appropriate, however, when a patient is experiencing an extended period of ill health following an acute infection but a diagnosis of ME is not yet certain. Note that ME can also be triggered by a stressful life event rather than viral infections exclusively.
In connection, the term myalgic encephalomyelitis itself may not be appropriate. Encephalomyelitis is defined as an inflammation of the brain and spinal cord, typically due to acute viral infection. This is not a pathologically proven explanation for what may be happening within the nervous system in people with ME. Encephalopathy, which is a general term indicating brain disease, damage, or significant disorder of brain function, may be a better descriptive term. The main symptom of encephalopathy is an altered mental state, which is present in ME in the form of cognitive impairment such as short-term memory loss and poor concentration or a short attention span. Encephalopathy can be caused by infections, anoxia, metabolic problems, toxins, drugs, physiologic changes, trauma, and more. The various abnormalities in hypothalamic, autonomic and cognitive functions as well as in cerebral perfusion reported in ME research literature concur with this.
Dealing with ME
ME symptom forms and their severity vary in different individuals, and at different points in a day, week, month and even over the course of a full year. In general, however, people with ME suffer from flu-like symptoms including muscle pain and migraine-like headaches. They are suddenly unable to engage in occupational, educational, social, or personal activities at the same level as previously and often experience profound fatigue that is not substantially alleviated by rest. In connection, people with ME experience unrefreshing sleep and malaise after even slight mental or physical exertion. They also present with some form of cognitive impairment and/or orthostatic intolerance - a lowered blood pressure when standing up.
To sum up, albeit awkwardly, people with ME often feel overly tired and unable to cope with what we consider to be normal levels of activity. They struggle to attend school regularly or hold down a job. They are in constant fear of losing stable employment and the uncertain future that this forces upon them. The stress of this often aggravates the condition, as does the more tangible loss of education in younger sufferers.
People with ME need a greater level of care and require more rest. In this day and age, even healthy individuals struggle with this most basic need. Support someone with ME today. Help the ME Association raise funds for ME information campaigns and research, or donate gift items for better sleep to ease the discomfort of an ME patient and help them get much needed quality rest. If you can’t afford to gift a larger item, even the simple relaxation foot pads can help someone with MS to find relief from headaches, back pain, stress and fatigue while eliminating toxins and improving blood circulation and sleep quality.