Malta Today Letters.
It is difficult to decide which would be worse: (1) not to accept that M.E. (Myalgic Encephalomyelitis) exists at all as a seriously disabling discrete neurological illness - even though the World Health Organistion has done so since 1969 and the most recent International Consensus Criteria (Carruthers et al, August 2011) reinforces that M.E. is separate from Chronic Fatigue Syndrome (CFS), or (2) to admit that M.E. may exist, obfuscate it within the heterogeneous CFS bundle, where it does not belong, since the nebulous symptom "fatigue" is not a prerequisite for M.E. but then reckon that M.E. is not sufficiently debilitating to make the sufferer eligible for welfare payments (A sick joke? Study reveals how ME sufferers excluded from welfare system, Malta Today, 9 October 2011 - http://www.maltatoday.com.mt/news/2011/1008/a-sick-joke-ME-sufferers-welfare-system). There's no humour here, only rotten science, poor logic, feeble morality and utter carelessness for one's fellow beings.
May I suggest that representatives of the Maltese Government, who hold either of these views, visit just one or two people whose M.E. meets the International Consensus Criteria and, perhaps be shocked into the reality that current welfare policy is untenable. I am sure that ...
the caring and supportive group ME sufferers Malta (http://www.mesufferersmalta.org/), which for many is the only life line they have, will provide you with contact details for a few of the millions of sufferers there are around the World, who are invisible because of the severity of their illness and for whom, sometimes, the consequences of revealing themselves - disbelief, even ridicule; disciplinary action from schools or social services, even involuntary psychiatric treatment - may be worse than remaining concealed.
Malta is far from alone in its shabby treatment of M.E. sufferers. The UK Government is using a foreign outsourcing company, Atos, to do its dirty work of trying to force some people back to work, who cannot stand upright, or will suffer relapses due to enforced medical examinations by unqualified assessors, when there is no one to witness them 24 or 48 hours later. M.E. sufferers are not entitled to assistance with fuel payments, which some healthy people receive, or prescriptions for essential drugs which they sometimes go without to pay for food or to avoid loan sharks at the door. I have no reason to believe it is much different anywhere else in the world.
Perhaps you have to have this hideous illness yourself, or see it devastate the life of a loved one before you appreciate its destructive force. Having done so for more than two decades, I could not wish it on anyone, not even these who seem to know not what they do but nor can I forgive them for it. Ignorance is only tolerable if it is accompanied by a willingness to be educated by those who know.
Yours sincerely
drjohngreensmith@mecommunitytrust.org
M.E. Community Trust.org
Dr John H Greensmith
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