Damning Comments on 'Encephalopathy'

By Dr Bruce Carruthers

Forwarded with Permission from Kevin Short. 2005

Dr Bruce Carruthers Damning Comments on the use of the term Myalgic 'EncephalOPATHY' in place of the term Myalgic Encephalomyelitis...

Dear all,

I recently had the pleasure of meeting Dr Bruce Carruthers and his wife when they came to visit our group in Norfolk (UK). As well as being a truly lovely man working tirelessly for justice for sufferers of M.E. (CFIDS in the USA), he happens to be a very eminent physician, with a CV as long as your arm, and the principal authour of the internationally acclaimed 'Canadian Diagnostic and Treatment Protocols'. On matters of M.E. then, his words should be treated with due gravity and organisations and activists claiming to represent M.E. patients should listen very carefully indeed.

I asked Dr Carruthers for his thoughts on the increasing use of the term 'encephalOPATHY' by certain individuals and organisations. I also asked for a usable quote from him which I could publicise. The result is the quotation given below - which is published with the full knowledge and cooperation of Dr Carruthers to whom I am deeply grateful:

"About your request for my thoughts on encephalopathy- The Politics around this are horrendous, and the motive for any name change would seem to have less than the good of mankind at heart.

I would not favour any kind of name change, since -itis is well established in the name ME, and there is no good reason for changing it, since -opathy would not reduce our state of ignorance re ME but serve to further confuse everyone- perhaps that is one of the motives behind the suggestion."

[Dr Bruce Carruthers, April 2005. Quoted with permission from a private email to Kevin Short of /M.E. Support /*/*Norfolk** **UK*/*].

*I do not think I can add anything more devastating to the alleged rationale for individuals/charities using this term. It must surely now be incumbent upon such individuals/charities to justify how they can possibly be representing the best interests of M.E. sufferers when they are substituting the dubious, unrecognised and damaging name '...opathy' for one ('...itis') which is endorsed by the WHO and eminent physicians like Bruce Carruthers. Readers might also wish to examine other questional actions of such individuals/charities claiming - falsely in my view - to represent the interests of Myalgic EncephalomyELITIS (ICD-10 G93.3) sufferers.

That there is a long history of political shenanigans directed against M.E. sufferers regarding name-changes has been commented on extensively by Professor Malcolm Hooper in the paper /'What is M.E.? What is CFS? Information For Clinicians And Lawyers' /and, most recently, on the DVD distributed by /M.E. Support Norfolk (UK).
I would also direct readers to Professor Hooper's views on the state of evidence for '...itis' in his paper entitled /'The Terminology of ME & CFS'/ from which I quote Professor Hooper:

"Despite the claims of some psychiatrists, it is not true that there is no evidence of inflammation of the brain and spinal chord in ME; there is, but these psychiatrists ignore or deny that evidence. For Example..." [see here]

With gratitude,
Kevin Short.

CC: Dr Bruce Carruthers, Canada.