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Scientist joins Sussex ME Society's advisory team
- Thread starter MeSci
- Start date
If they are a local group affiliated in any way to the MEA, surely the MEA has some control over what message they are putting out in the name of the MEA. I also noticed their items in the MEA magazine. I wish the MEA was a bit more proactive in putting health warnings on organisations that promote GET.
Dolphin
Senior Member (Voting Rights)
I'm pretty sure that there are no groups affiliated with the ME Association now.
In around 2000, the ME Association looked for money back from local groups. The local groups were then forced to set up independently.
from the ME Association website - also registered as ME Society
https://www.meassociation.org.uk/me-association/
https://www.meassociation.org.uk/me-association/
Well spotted. In all these years I have never noticed that, nor seen them use the name the ME Society.
ETA Perhaps the MEA conducts a different range of activities under the name the ME Society. Probably not, but this appears very odd.
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I think this came up when I was sorting my will out and the solicitor had put it in full in bequest ( I have no kids and own house so some will go to charity when I depart)
Why?
Andy
Retired committee member
Andy
Retired committee member
¯\_(ツ)_/¯
Presumably, the editor, which someone upthread has indicated is new(-ish) to the job, is unaware of the concerns with this group that we have or is aware but doesn't agree with them.
@Russell Fleming, would it be possible for you to convey our concerns about the publication in the MEA magazine of articles about this Sussex group which promotes the BPS approach to ME?
adambeyoncelowe
Senior Member (Voting Rights)
It may be more simple than that: the advertising team might want the money, and so when Colin Barton's people offered to pay up for some featured space, they may not have felt able to refuse. Small/independent magazines cost a tonne to produce (tens of thousands per issue, usually, for a glossy publication printed in a run of 30,000 or more) and rarely cover costs from advertising alone.
Andy
Retired committee member
There's no indication that any of these articles are paid for but I can certainly see the logic in that possibility.
Just found another one I'd missed in the current edition.
Dx Revision Watch
Senior Member (Voting Rights)
Here's the history (from 2009, archived on my ME agenda site):
https://meagenda.wordpress.com/2009/09/21/me-association-now-registered-as-me-society/
ME Association now registered as “ME Society”
September 21, 2009
ME Association now registered as “The ME Society”
In February, this year, I sought clarification from the ME Association Board of Trustees around their recent use of the wording “Welcome to The ME Association, sometimes known as The ME Society.” on their website and “Also known as The ME Society…” on their ME Association on MySpace site.
I note, today, that the wording on the Home Page of the ME Association’s website has been changed yet again and now reads:
http://www.meassociation.org.uk/
“Welcome to The ME Association, also registered as The ME Society.”
Charity Commission website entry at 21 September 2009:
http://www.charity-commission.gov.u...steredCharityNumber=801279&SubsidiaryNumber=0
801279 –
THE MYALGIC ENCEPHALOPATHY ASSOCIATION LIMITED
Other names
MYALGIC ENCEPHALOMYELITIS ASSOCIATION (Old Name )
THE MYALGIC ENCEPHALOMYELITIS ASSOCIATION (Old Name )
THE MYALGIC ENCEPHALOPATHY ASSOCIATION (Old Name )
THE ME SOCIETY (Working Name )
THE ME ASSOCIATION (Working Name )
—————-
I am not aware of any announcement having been made by the ME Association about the formal adoption of this organisation working name nor the rationale behind it. There would not appear to be any reference in the summaries of the Association’s board meetings to any decision being taken to register “The ME Society” as a Working Name with the Charity Commission or to the ratification of a decision taken between board meetings.
Once again, this appears to be an issue that the Board did not want (or did not consider) it needed to be transparent about. But ME Association members have a right to be informed about such changes and the rationale behind them and some of them might also have expected to have been consulted.
-----------------------------
https://meagenda.wordpress.com/2009...the-me-association-and-its-use-of-me-society/
What’s in a name? The ME Association and its use of “ME Society”
March 25, 2009
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.
-----------------------------
https://meagenda.wordpress.com/2009/03/25/poll-the-me-association-and-the-use-of-the-me-society/
Poll: The ME Association and the use of “The ME Society”
March 25, 2009
What’s in a name?
Poll: The ME Association and the use of “The ME Society”
The ME Association has recently started using:
“Welcome to The ME Association, sometimes known as The ME Society…”
on its main website, on its MySpace site and also in its magazine.
Three existing organisations are currently associated 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 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 patient organisations. Ms Newman styles herself “M.E. Society (former Peterborough M.E. & CFS Self help)” and uses the email address m.e.society@live.co.uk and the domain name www.m.e.society.co.uk on notices circulated via the internet. But the domain name www.m.e.society.co.uk does not appear to have been registered – which begs the question: Why is Ms Newman using it?
3] The ME Association.
What do you think about this? Do you consider that this will result in confusion or not?
To further complicate matters, the names mesociety.co.uk mesociety.org mesociety.org.uk have been registered as domain names.
Please enter the Poll. Click on “View Results” for voting percentages.
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@Dx Revision Watch that is very interesting. This seems to be one of those cases where the m
If there is nothing to hide it is not clear why they could not have given a civil explanation, but that does not seem to be the way ME charities operate.
I suppose that if the Sussex and Kent group started in 1987, the reference in 1991 to the ME Society could have been to them, but that would hardly fit with the description the "powerful self-help group" which seems much more likely to be the MEA.
Apologies if this seems obsessive, but it is in such details that discoveries are made.
Revisio
ore you learn the less you know. Given that the Sussex and Kent ME/CFS Society has used the name The ME Society it would be expected that the reference to the ME Society in the Funraising article above would be to them. It does however look very strange that the MEA goes to the trouble of registering the name The ME Society and then, in its magazine, allows someone else to use it.If there is nothing to hide it is not clear why they could not have given a civil explanation, but that does not seem to be the way ME charities operate.
I suppose that if the Sussex and Kent group started in 1987, the reference in 1991 to the ME Society could have been to them, but that would hardly fit with the description the "powerful self-help group" which seems much more likely to be the MEA.
Apologies if this seems obsessive, but it is in such details that discoveries are made.
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Dx Revision Watch
Senior Member (Voting Rights)
Obsess away, chrisb, I always do.
The correspondence with the MEA in February 2009 and with colleagues with whom this issue would have been discussed, at the time, should still be on one of my old laptops. I'll be booting it soon, to keep the A/V up to date, and I'll see if I can find it.
Something might have potentially triggered the registration of this name which I have since forgotten, for example, possibly the MEA had noted the fact that Diane Newman had been using this name when signing in at APPG on ME meetings and the board felt the name might be confused with its own organization's name. Or possibly the MEA had been incorrectly referred to in a media article as the "ME Society" and thought they would register the name, anyway. Whatever the reason, it was odd that the registering of this name with the Charity Commission wasn't minuted at the time. I'll see if the contemporaneous correspondence sheds any further light.
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Dx Revision Watch
Senior Member (Voting Rights)
Well, I've found the correspondence between myself and the MEA, in February 2009 and there is stuff I had forgotten. I'll need to sift through it and will post what I feel is relevant.
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MeSci
Senior Member (Voting Rights)
I didn't notice anything particularly controversial in CS's talk, but the link https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/ (Learn more about CFS) was definitely dodgy.
