Letter, Re: Mum's city centre messages offer inspiration (Oxford Mail, 24 January 2012)

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Oxford Mail Letters.

M.E. (/Myalgic Encephalomyelitis/) patients are always pleased to hear

that someone, who has been chronically ill, has now recovered and will

hope that Ben Linus (Mum's city centre messages offer inspiration,

Oxford Mail, 24 January 2012 -

http://www.oxfordmail.co.uk/news/9488070.Mum_s_city_centre_messages_offer_inspir\

ation/

) stays well and does not relapse.

They will, however, be as concerned as always, that his illness -

whatever it was - is taken to be, " also known as " M.E. This aka tag

continues to impede progress towards understanding of and recovery from,

not only M.E. but all the other conditions that are bundled into an

indiscriminate diagnostic term, more commonly Chronic Fatigue Syndrome

(CFS) but sometimes, as here, Chronic Immune Dysfunction Syndrome (CFIDS).

It would be a serious mistake, for doctors and patients alike, to assume

that since Ben improved after taking exercise - tennis, in his case - it

would be the best thing to do for everyone else. All the hard-knock

experience of M.E. sufferers being set back and research evidence to

date (Twisk & Maes,2009) proves that Graded Exercise Therapy (GET), even

supervised by professionals, makes a majority of people with M.E. Worse,

sometimes irrecoverably so.

Perhaps Starling Linus could knock out a few posters to get this message

across as effectively as she did her husband's recovery because none of

us has been able to in at least 25 years of suffering.

Yours sincerely

drjohngreensmithmecommunitytrust (DOT) org

Dr H Greensmith

ME Community Trust. org