What’s in a name? The ME Association and its use of “ME Society”

The ME Association and its use of “ME Society”

On 12 February 2009, I wrote to Tony Britton, ME Association Press and Publicity, expressing my concerns that its newly launched MySpace site at:

http://www.myspace.com/meassociation

said:

“Also known as The ME Society we provide as much up-to date info, practical advice and support as we can for people affected by ME/ CFS/ PVFS. The support and info also extends to helping sufferers’ families and carers.”

Mr Britton was dismissive of my concerns and so on 13 February, I wrote instead to Mr Neil Riley and Ms Gill Briody, MEA Company Secretary.

Mr Riley also dismissed my concerns.

I also noted that the wording on the ME Association’s main website had at some point in the last few months been changed to read:

“Welcome to The ME Association, sometimes known as The ME Society…”

I told Mr Riley that I considered it to be misleading and inappropriate and that it would only serve to promulgate the use of an incorrect name by members of the public.

I also said that since there is already another UK organisation operating under the name of “The M.E. Society” (the organisation formerly operating under the name of the Peterborough ME and CFS Self Help Group, Chair: Ms Diane Newman) that this would also result in confusion.

The domain names:   www.mesociety.co.uk   and  www.mesociety.org   have already been registered.

I asked Mr Riley if he would confirm when the text on the MEA’s main website had been changed to read:

“Welcome to The ME Association, sometimes known as The ME Society…”

and whether the MEA intended to reconsider the appropriateness of the use of the text “Also known as The ME Society…” on the MySpace site, which was incorrect and misleading.

The text on the MySpace site was subsequently amended to match the text currently being used on the ME Association’s main website and, I note, also in the Spring 2009 edition of ME Essential. But Mr Riley has been unwilling to confirm to me the date on which the main website wording was changed – just a vague “some time ago”.

So, three organisations are currently seeking to strongly associate with the name “The ME Society”:

1] The Sussex and Kent ME and CFS Society has referred to itself as the “ME Society” for some years locally and on its website but is not registered with the Charity Commission under this name and does not operate formally under this name. 

2] Ms Diane Newman’s Peterborough ME and CFS Self Help Group has been operating informally under the name of “The M.E. Society” since last year and Ms Newman signs herself in under this name at APPG on ME meetings. Her group is already being listed under this name on some Peterborough websites for local organisations.

The name has also been registered as a domain name.

3] The ME Association.

I wasn’t happy about this in February and I’m still not happy with the ME Association’s response to my concerns.

This decision is misguided and misleading.

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