More on ME

Yes
in this weeks Big Issue in the North there are three letters from ME
Campaigners in reply to Spencer’s comments on behalf of AfME, myself Joy Rees
and Ciaran Farrell. So time to publish them methinks beginning with Ciaran’s,
Joys then finally mine, so here goes:


The
methods and methodology by Action for ME used for their two surveys in 2001 and
2008 were completely different. Avery large percentage of the 2008 survey was
carried out online without any apparent check on who was an AfME member, or ME
sufferer or carer for someone with ME.


AfME
broadened the concepts of psychological graded exercise therapy and cognitive
behavioural therapy and who can assume the role of the “therapist” so it
appears that far more patients were formally treated than was actually the
case., and that the results of this “treatment” were far more successful that
was the case.

AfME
did this in support of their bio psychosocial” illness model of chronic
fatigue, which has large psychological and social components and a small
physical component – the prevailing view in the medical profession.

ME
is not chronic fatigue as ME is defined by the World Health Organisation as a
physical neurological disease and the WHO’s classification system is binding on
the UK government. What we need is a charity that will stand up to the
government for ME sufferers and carers and not work with government against us.

Ciaran
Farrell, ME Sufferer and AfME member, London

Replies,
comments on this or any other letter published on this subject can be sent to:

letters@bigissuenorth.co.uk

The
Big Issue in the North, 10 Swan Street, Manchester, M4 5JN.