Severe ME Awareness Day – 8th August

I am sad – and indeed embarrassed – to say that I was completely unaware that yesterday was Severe ME Awareness Day – a condition that SO badly needs attention focused on it as it is so little understood. However, I am delighted to say that having logged into the ME Association, I see that the whole week is devoted to raising awareness of Severe ME.

I was alerted to the day by one of our long term subscribers who sent me a charming E-card to celebrate it. She suffers from severe ME and has been bed bound for many years. Apart from being light and sound sensitive, she is also unable to regulate her body temperature so extreme weather, such as we are experiencing at the moment, makes life even harder for her. (And what provision will there be to enable her to pay for the extra electricity she has to use to keep her fan on?)

Most people have heard of ME. Indeed many have friends who have suffered from what is classed as mild or moderate ME, a horribly debilitating condition but one from which sufferers usually manage to recover – if not entirely, at least enough to allow them to lead a moderately normal life. However around 25% of ME sufferers do not get better – they just get worse and very occasionally, they die. (8th August was chosen as the start day for Severe ME awareness week in honour of Sophia Mirza, a severe ME sufferer who died in 2005 and whose death was, it is thought, the first to be attributed to ME.)

There are several websites which describe the condition in detail – and include posts from those whose only way of occasionally communicating with the outside world is via a blog. See for example Whitney Dafoe’s contribution to the Open Medicine Foundation’s Community News site or these contributions to the ME Association’s Severe ME Awareness week page. However, for those who want an overview, this is adapted from MEAdvocacy’s excellent blog post on the week.

Myalgic Encephalomyelitis (ME) is a chronic, often severely disabling disease, that affects the autonomic nervous system, immune system, endocrine system, among others……… One out of four people with ME (PWME) over time become so ill as to not only be disabled, and not just housebound, but completely bedridden. These patients struggle to do what most take for granted like brushing one’s hair without gasping for air, feeding themselves, or getting to the bathroom unassisted. For them, life is reduced to survival, with the 4 walls of their bedroom becoming their prison, and the outside world a faded distant memory…..

….To date there is no cure and no meaningful universally effective treatments. For many of the sick undone by Severe ME, there is little more to look forward than darkened and hushed rooms (due to light and sound sensitivities), and incapacitating weakness, absolute exhaustion, and far too often, unrelenting pain.

Severe ME for loved ones, means…

…they need help with personal care

…cannot walk and even turning over in bed is painful

…unable to cut their own food, even a banana

…many are forced to use BOTH hands to lift a small plastic drinking glass

…daily water rationing for many because they lack the strength to walk the 10 steps to the bathroom

…being too weak to brush their hair or teeth

…requiring dark towels be taped over the black-out curtains in their bedroom, because the stimulation of even a few pinpricks of light can prove agonizing

…speech reduced to whispering, if sufferers can muster the strength to speak at all

…being tube fed. For many Severe ME patients, the ability to feed themselves eventually slips away.

Plight

The plight of these severe patients has been misunderstood, trivialized and even disbelieved. They suffer in silence, in darkened rooms because their hyper-sensitivities to light, sound and touch…..  Severe ME patients are seldom seen by a doctor because they cannot travel to a doctor’s office. Consequently, they have not taken part in studies and their unique symptoms have been missed or ignored in the medical literature for the disease…….………. It is hard to imagine any other illness having their severest patients omitted from research studies, criteria development, and even choosing a name for the disease!

……..The devastating symptoms of these Severe ME patients still are not understood by many in the medical profession. The result for many Severe ME sufferers has been catastrophic. Due to medical and societal ignorance, ME patients have been inappropriately “sectioned” as mental patients against their will, despite suffering no mental illness. Children and young adults with ME have been forcibly taken from their parents and denied proper medical care as per ME expert clinicians. Medical education about the true nature of this disease is the only way forward to make sure the atrocious abuse of these severely ill patients stops.

Please check into any of the sites below if you want to know more or to find out how you could contribute to a greater awareness of this truly horrible condition.

• ME Association
• Open Medicine Foundation
• ME Advocacy