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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 -
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.
M.E. Community Trust.org
Dr John H Greensmith