Scandalous that ME is still being ignored

[Ember]

Thank you for your letter, drjohn.

Published: 09/04/2012 08:00

YOUR readers who are not online, or subscribed to Facebook, might not be aware of the hundreds of messages of sympathy, together with thoughts and prayers, on the passing of Victoria Webster (Complications from ME led to death of teenager, Burton Mail, March 31) from fellow sufferers of ME (myalgic encephalomyelitis).

It is a sadness mixed with frustration, leading to anger that, in the same week as the passing of another dearly loved friend, Emily Rose Collingridge, there is no change in research policy or treatment that will prevent this from happening again and again.

Still, this seriously disabling neurological illness is treated as nothing different from chronic fatigue, which may be managed by lifestyle changes but which do nothing for people with ME apart from divert much-needed funding for biomedical research.

It is scandalous that, until ME is recognised and treated differently from chronic fatigue syndromes, hundreds of thousands of people in the UK, millions worldwide, will remain neglected, invisible and in oblivion, until we hear the next piece of tragic news.

Dr John H Greensmith, ME Community Trust

http://www.burtonmail.co.uk/News/Letters/Scandalous-that-ME-is-still-being-ignored-09042012.htm

 

[alex3619]

This isn't a scandal. A scandal is minor social mistake, like a politician having an affair and then making the mistake of being caught. This is a inter-generational crisis affecting millions world wide. It occurs to me something similar might have happened with neurasthenia. Initially it sounded almost identical to ME, then it broadened to cover everything that might be nervous exhaustion, and then it fractured into many separate diagnoses. How long will it take for that to happen with CFS? How come medical authoriies haven't learnt from mistakes made in the early twentieth century? Its a collossal systemic blunder repeating itself, and has already brought the medical profession into disrepute for many of us.

Bye, Alex