United Kingdom: ME Association governance issues

Colin Barton's Sussex ME/CFS group* were sometimes referred to as the "ME Society". This had been brought to the attention of the MEA (it might have been by me - I can't recall now) and their response was to register the working name "The ME Society".

*Correction: It was both Diane Newman’s Peterborough ME and CFS Self Help Group and the Sussex and Kent ME Group that were using the "ME Society" at the time.

 

From September 2009:


https://meagenda.wordpress.com/2009/09/21/me-association-now-registered-as-me-society/

ME Association now registered as “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.

[September 2009 blog post ends]

 

Is it possible they registered the ME Society to stop anyone else setting up a charity in that name, either to avoid possible confusion or because they thought they might want to use it at some point?

 

From February 2009 (this blog posts predates the one I have posted above Kitty's post):

(It was both Diane Newman’s Peterborough ME and CFS Self Help Group and the Sussex and Kent ME Group that were using the "ME Society" at the time.)


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”

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.

3] The ME Association.​

The name has also been registered as a domain name.

​

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.

[February 2009 blog post ends]

 

I'm sure they did. But the point was that the registering of this additional working name with the CC wasn't discussed with or announced to the membership but just appeared on their website and on one other platform and two other registered charities were also at the time using that name, and someone had registered two domain names.

Also the ME Association wasn't "also known as The ME Society" or "sometimes known as the ME Society" in 2009.


Note the domain:

mesociety.co.uk is currently available for $7.88.

And mesociety.org is now available for $13.88.


So the domain names were not renewed and the MEA did not bother to snap them up when they became available again.

For the sake of around £30 a year, you'd think they would have secured the domains.

 

They are lucky that one or both of those domains haven't been purchased and used for porn.

 

I'm sorely tempted for the sake of a couple of quid

 

Me too, Fainbrog.

 

And of course, there is no summary of the 2015 AGM archived on the MEA's website. No summaries of AGMs or General Meetings that I can find since the AGM and EGM in 2013, other than the AGM Minutes for 2023. (There should be AGM and General Meeting summaries in ME Essential magazines if anyone has kept them.)

 

I don't understand why the ME Society fees were not documented as presented or referred to with the other outlays in the Q & A at the AGM

So I checked it as follows:

The MEA appears to be a "Private Company Limited by Guarantee Without Share Capital Use of 'Limited Exemption' "

The ME SOCIETY appears to be a "Private Company Limited by Guarantee Without Share Capital", with the sole director being Mr Riley, and the address registered for correspondence with this Society is Byways (the previous MEA address) which is also the address registered for correspondence with the sole director Mr Riley - and there is also a registration for the Society's official address as the current MEA address.

This is the "hands-length distance" kept I suppose.

The MEA's previous address was also registered to a Mom and Pop shop directed by Mrs and Mr Riley, so it is either a business address or a home address. Mr Riley's last registered occupation was as IT Consultant in 2002, with another 2002 registration as Retired

The ME SOCIETY repeatedly goes "dormant", whatever that means

From 2020-2023 there are much more hefty "total exemption full accounts", entitled to "exemption from audit" and the (unlisted?) "Members had not required the Company to obtain an audit of its financial statements"

Mr Riley had made himself "fully responsible for keeping the accounting records and preparing financial statements", no need to deliver an "income statement", these financial statements were all "approved, authorised for issue and signed" by Mr Riley, "the Notes form part of these financial statements" but do not note the differing "correspondence address"

"On average 1 employee", Notes state this total exemption document was "delivered electronically", document much heftier than the "annual returns" filed 2013 to 2016 but with with "no Member list", with service address filed as Byways

Having authorised the use of this Society's operating-MEA name to other (unregistered) orgs, then these unregistered orgs will not be getting the totally informal amateur cease and desist letter, I suppose, nor be under audit either

@MrMagoo, may I ask what “we must investigate whether movement is useful” project is being set up - did I miss something is this the mysterious epidemiology project I have surmised upon or something else but ghastly ?

 

They would also be wise to register "meassociation.uk" as well, which is currently unregistered.

I didn't understand the bit about the fees or exemption documents but I think what Bicentennial is referring to is that there are two registered companies:

"The Myalgic Encephalopathy Association Limited" (company number 02361986 - Companies House link); but also:
"The Myalgic Encephalopathy Society Limited" (company number 06898702 - Companies House link)

There is one officer/sole director of "The Myalgic Encephalopathy Society Limited" - Riley, as can be seen from the officers page.

On the Charity Commission's site "The ME Society" is referred to as an equivalent "working name" for the MEA (link).

 

I am sorry @Trish, I should have added them before posting, thankyou for waiting.

Here are the links and its under the tab for this Society's Filing History I found the 2022, 2023, and earlier financial filings (but these open thru some amazon service so their links won't reproduce here)

https://find-and-update.company-inf...cers/zv6do39-wd7iVzImyLfmk9oCehs/appointments

https://find-and-update.company-information.service.gov.uk/company/06898702/filing-history

https://find-and-update.company-information.service.gov.uk/company/02361986

 

They said at the agm that they were setting up a working party or something. I think they tried to frame it as “well, we heard there was some concern so we are taking it seriously and looking into it properly” when of course, the actual issue isn’t whether people should move, or not, but whether Riley’s whole article was offensive and unhelpful.

 

MARGARET MARY LIMITED (04440960)
This company was incorporated in May 2002 and dissolved in March 2011. It appeared to be a small company for whom the Directors were Neil Riley and his wife. The company was registered two years before Riley joined the MEA's board of trustees and has no relevance to the operations of the MEA.


THE MYALGIC ENCEPHALOPATHY SOCIETY LIMITED (06898702) Registered office address: 7 Apollo Office Court Radclive Road, Gawcott, Buckingham, Buckinghamshire, MK18 4DF

was incorporated in May 2009, around three months after the MEA had started including the text: "sometimes known as The ME Society", "Also known as The ME Society…” and "also registered as The ME Society" on their website landing page.


The company's Certificate of Incorporation and Mem & Arts document is here:
https://dxrevisionwatch.com/wp-cont...ety-mem-and-arts-companies_house_document.pdf

Its sole Officer/Director is registered as Neil Riley. It is currently exempt from submitting audited accounts and has no assets and no reserves.

As this dormant company has not traded since incorporation I think we can assume the company name was registered with Companies House back in May 2009 in order to discourage the name "The Myalgic Encephalomyelitis Society Limited" or the "ME Society Limited" being registered by anyone else.

In October 2008, Diane Newman was listed on the draft Agenda for an APPG on ME meeting as giving a presentation as "Co-ordinator M.E. Society (Peterborough M.E. & CFS Self-Help Group)" and was also known to sign herself on the APPG on ME meeting attendance list as "Di Newman, M.E. Society".

Her public use of the name "M.E. Society" in 2008 as a new name for the Peterborough group may have triggered the MEA into registering "THE MYALGIC ENCEPHALOPATHY SOCIETY LIMITED" as a company but I don't know, as Riley did not offer any explanation.

Diane Newman had, herself, been a trustee of the ME Association from March 2004 until her resignation from the board of trustees in September 2006.

The MEA does not currently, as far as I could see, have any reference on its website to "also being known as" or "also registered as" the "ME Society".

 

I seem to remember (badly and it was in passing quite a while ago so not something I can just fine) hearing that in the distant past there maybe were two ME associations/societies that perhaps merged and ... maybe became what we now know as the MEA? ie could these be from these being subsumed into the MEA?

 

The MEA was formed in 1976 and incorporated in 1989, initially as "The Myalgic Encephalomyelitis Association".

Its name was later changed (in August 2001) by Special Resolution to "The Myalgic Encephalopathy Association". The name change had been spearheaded by Dr Charles Shepherd and voted in favour of by the membership via postal ballot.

The "Society" name's full registered name is MYALGIC ENCEPHALOPATHY SOCIETY LIMITED and it wasn't registered with Companies House until 2009 - long after the MEA was incorporated and after the name change to "Encephalopathy".

So I don't think the registration of the "Society" name is related to any historical mergers.

I can remember speaking to Tony Britton about this, back in early 2009 when we first spotted the name on the website. He said that people sometimes phoned Head Office, calling it the "ME Society", so they thought they ought to register the name.

All Riley had to do was give me a straight answer to my questions - but straight answers are anathema to Mr Riley.


Edited to add: I've done a quick skim through the ME Society's Mem & Arts and they look to be based verbatim on the 2007 Mem & Arts and have not been updated since then to drop the "Memorandum" requirement, nor to incorporate any other changes required since 2009 to bring the Articles in line with the Charities Act 2011 or the new "model form" introduced by the Companies Act.

 

If you're feeling mischievous, you can currently purchase the domain "mesociety.co.uk" for as little as 49p for the first year:

https://www.fasthosts.co.uk/domain-names/search/?form_id=dac_full_form&domain=mesociety.co.uk


Here's a new one (not ME related):

https://www.me-society.com

https://www.me-society.com/about