It has been great to see ME (Myalgic Encephalomyalitis) given space in the media. Without media assistance, raising public awareness would be impossible and I for one feel indebted to anyone who dedicates his/her time to bring ME patients’ plight to light.
Unfortunately, however, ME is recently being characterised in news bulletins, features and television programmes as mere “exhaustion”, “fatigue” or “severe tiredness”. This is a huge, and potentially damaging, over simplification.
ME is a neurological (classified as such in the World Health Organisation’s International Classification of Diseases since 1969) and multi-systemic disease with over 64 individual symptoms scientifically documented. As with many chronic illnesses, fatigue is present in ME but the overwhelming range of neurological symptoms and serious immune abnormalities are what make ME such a devastating and challenging disease which without expert medical assistance is progressive and in rare cases life-threatening.
Although symptoms vary in number, type and severity depending on how badly affected an ME patient is, symptoms such as dysautonomia, cognitive impairment, speech difficulty, low CO2, metabolism abnormality, myalgias, exercise intolerance and/or post-exertional malaise, severe gut problems, food and chemical sensitivities, intolerance to light and noise, mobility problems, problems with body temperature and weight, immune system abnormalities, infection reactivation, chronic co-infections, just to mention a few, plus the accompanying complications, give a more realistic picture of how disabling the condition really is – ranging from completely bedridden to somewhat functional.
Sadly, misinformation could do more harm than good. Describing an ME patient as being merely tired is what has earned him/her the label of notorious malingerer. It definitely doesn’t do justice to the experience of a person genuinely suffering from a neuro-immune disease such as ME.
People with ME have been misunderstood, ridiculed and ‘silenced’ for ages, so having avoice in the press is very reassuring and we are thankful. Backing us accurately would be really appreciated.