December 2008: ME Free For All: "Re: ME controversy hampers research, Independent, 19 December 2008
Sir Peter Spencer, Chief Executive of Action for ME, writes, 'to print that 'the best treatment [for ME] is graded exercise therapy' is wholly misleading.' (ME is a devastating illness, but don't lose all hope, Independent, 15 December 2008). He is quite right and Action for ME's most recent survey, showing that GET makes a majority worse, is supported by other research in Japan and the USA.
Yet, incredibly, Sir Peter's own organisation is calling for more funding to increase the provison of the very treatment, we have all agreed, has been shown to make most M.E. sufferers worse after it, some irrecoverably so, leaving them housebound or in a wheelchair. Even more astonishingly, they are getting it.
In the meantime, promising biomedical research, including the genetic work referred to by Dr Anne Faulkner in her letter (ME controversy hampers research, Independent, 19 December 2008), is being starved of public money and is having to rely on charity or go undone.
The advice of this organisation and many other M.E. charities is, unequivocally, to choose the option, contained in the NICE (National Institute for Health and Clinical Excellence) guidelines, of declining treatment in one of the regional clinics unless or until they have reliable evidence to support them offering it.
Dr John H Greensmith
ME Free For All. org"