Myalgic Encephalomyelitis, The cause now has 653 members.:
Sufferers, their friends and family, the community and most of the medical profession have been operating under mistaken beliefs surrounding M.E. - namely, that it is equivalent to 'Chronic Fatigue Syndrome', which is defined as an untestable, fatigue-centred diagnosis of exclusion.
This needs to change as it denies all those diagnosed with M.E. or 'CFS' proper medical investigation and treatment.
Various interest groups benefit from M.E. being trivialised by being falsely associated with the 'fatigue' concept, but no-one with M.E. benefits from it. [And nor does any sick person *without* M.E. benefit from the wastebasket diagnosis of 'CFS'.]
We need to fight for the interests of M.E. sufferers to come before the interests of medical insurance companies and other profit-tainted medical services, including government medical services that deprioritise science-based and patient-centred medical care.
M.E. has been studied for decades and contrary to beliefs, much is now known about it. It is not an illness that cannot be seen by medical tests. Some research has, however, been tainted by inclusion of population samples who do not have M.E. but fatigue and/or immune symptoms, which can be caused by hundreds of conditions. This situation has to change as it benefits no-one other than those who profit from steering proper research and medical treatment away from M.E. sufferers.
We need a patient-centred medical system that isn't tainted by the profit motive. We need to combat the misconceptions around M.E. which have already been spread by those ignorant of it, or who have an interest in perpetuating the "CFS" invented syndrome. But in order to get there, we need to mobilise the community and dispel the myths surrounding Myalgic Encephalomyelitis.
We need to spread the word!
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M.E. is a serious, occasionally fatal and well-documented disease. It has had a World Health Organisation listing since 1969.
It has no more association with 'fatigue' than have most other chronic, serious illnesses.
M.E., in contrast to 'Chronic Fatigue Syndrome', is not a syndrome but a testable disease. It should not be conflated with 'CFS'.
The waste-basket diagnosis of 'CFS' needs to be swept away, as it benefits no-one. ME treatment must receive adequate, not zero, government funding!