In July 2011, a new set of criteria for diagnosing ME were published, under the authorship of most of the major researchers involved in the ME or "CFS" field (Byron Hyde is absent, however). It is based on the former Canadian Consensus Criteria with some modifications, notably the use of the term myalgic encephalomyelitis and a decisive rejection of the term Chronic Fatigue Syndrome, or even the combination of the two, and the abolition of a requirement for the disease to be established for six months. The criteria have received enthusiastic acceptance from most of the ME community although there are some dissenters.<\/p>\n
One weakness I notice in the criteria is how they decide what constitutes "severe" ME:<\/p>\n
\nOperational notes:<\/strong> For a diagnosis of ME, symptom severity must result in a signi\ufb01cant reduction of a patient\u2019s premorbid activity level. Mild<\/strong> (an approximate 50% reduction in pre-illness activity level), moderate<\/strong> (mostly housebound), severe<\/strong> (mostly bedridden) or very severe<\/strong> (totally bedridden and need help with basic functions). There may be marked \ufb02uctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects.\n<\/p><\/blockquote>\n
The tendency in British ME organisations has been to define "severe" as starting when someone is housebound, not when they are mostly bedridden; the 25% ME Group, which represents the severely affected in the UK, includes the housebound<\/a> among the severely affected. Someone with ME can, however, suffer very extreme symptoms such as pain and hypersensitivity and yet not be bedridden: many of the videos featuring Linda Crowhurst show her sitting in a chair rather than lying in bed, and I recently read an account by a sufferer in Minneapolis who, while not bedridden, has such severe sensitivity to light and sound that she must live in total darkness and, for some time this year, has been unable to speak or tolerate any speech or other sound and had to communicate through finger-spelling<\/a> (however, she said in September that her hearing had improved a lot in recent weeks).<\/p>\n
By the ICC's criteria both these women have "moderate" ME. By anyone's standards, that is a form of severe illness which puts enormous restriction on the sufferer's life and causes them great suffering — more so than simply rendering them deaf and blind, because someone who is deaf and blind does not have to avoid light or sound. Being bedridden is only one factor which might determine severe ME; although nobody would disagree that someone who really is totally bedridden is very severely affected, matters such as pain, light and sound sensitivity and cognitive dysfunction need to be taken into account as well. The classification is more than just semantics, as it may well affect the patient's access to services and benefits if they are wrongly classified as "moderate".<\/p>\n","protected":false},"excerpt":{"rendered":"
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