United Kingdom: ME Association news

Here is my fifth attempt at getting details of the MEA’s general meeting that adopted the ‘current’ articles of association. This time I contacted the general office and asked that my request was dealt with by someone other than the chair as I lacked confidence in his previous responses:

 

Thanks Peter, appreciate your efforts to get the info.

 

Any explanations for the changes being proposed via the 2014 Special Resolution, if given, would have been included in the issue of the magazine that contained the November 2014 Resolution ballot slip.

But if the version of the Articles that Neil Riley has said are the Articles that had been voted in favour of on 18 November 2014 (as opposed to the version that he says had been sent in error) then the only changes from the previous (2013 Articles), as registered with Companies House in late November 2013, is this:

The change of "2000 Charity Act" to "Trustee Act 2000". There were no other differences that I can see between the 2013 Articles and the "correct" 2014 Articles.

But nothing had been added, because apart from the updating of "2000 Charity Act" to "Trustee Act 2000" there are no other changes.

Which is why I reposted the image of the Resolution certification letter - because as far I understand, all that was being voted on that year was adopting the "new form" for Articles. And if that had been all that was being voted on in 2014, it's unclear why they needed to call another General Meeting since the adoption of the "new model form" had been included in the Resolution of November 2013.

However, if it transpires that there were other changes being voted on in 2014, in addition to the adoption of the "new form", then the version of the Articles that Riley is saying were the "correct" 2014 and which should have been sent to Companies House can't be the "correct" version, since there are no material changes to "Allowed payments" between 2013 and 2014.


The updating or correction of "2000 Charity Act" to "Trustee Act 2000" would probably be considered a minor amendment which could have be done without the need for a Resolution.

As you can see in the image, there is no other difference between that section of the document in the version that Riley says should have been sent in with the Special Resolution certification letter, and the text of "Allowed payments" in the 2013 Articles.

It's the version that was sent to Companies House, apparently in error, that differs from the 2013 Articles in four sections, including "Allowed payments":

 

Well done, Peter, and thank you.

 

Charles has issued clarification on the research that the ME Association may be funding:

https://www.facebook.com/meassociat...HfzNJN2hMiuQvRp2iZH87ZEvF4iR1CeKjyrqGTKPJrkfl

Tom Kindlon's ME CFS & related page: News, Research and more
Hi Tom

To clarify

We are currently looking at two new research proposals - the total cost of which would be over £1 million

The epidemiology study, which is not really about prevalence, is nowhere near £1 million

The other research, which is biomedical, is around £1 million

As you infer, the Ramsay Research Fund has a remit to fund biomedical research into cause and treatment of ME/CFS - which it does

We are, however, able to dip into general funds to occasionally fund research outside this remit. Two examples here would be the research we have funded which has analysed the safety and efficacy of CBT and GET and the analysis at the University of Exeter of results from the most recent patient evidence - which has now been submitted for publication

Hope this clears up any confusion

Charles

 

OK, I have dug out my correspondence with Neil Riley in early 2009 regarding this text on their MySpace page:

"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."​

On 12 February 2009, in addition to another query regarding the MySpace page, I had asked Neil: "Since when has the ME Association also been known as "The ME Society"?

Neil's response on 13 February was:

As to our website and the word "Society". Over the years The ME Association has received calls both to the office and to its wonderful MEConnect Telephone Helpline asking to speak to "The ME Society".

We also get written communication addressed to us in that way. It seems that, as a National Charity, we are known by the name "Society" as well as being called an "Association". I guess this may be for two reasons. First, that The ME Association was the first substantial charity in the field of ME/CFS and secondly that people who first come across ME do not know the official names of each charity. To them it does not matter that we call ourselves an Association or a Society; they just wish to speak to someone about ME/CFS. Our website therefore merely reflects the fact that most people know us as the ME Association but others as the ME Society. You will note that we used the words "sometimes known as The ME Society" and not "also known as".​

In February 2009, the wording on the MEA's website had said:

https://web.archive.org/web/20090202042751/http://meassociation.org.uk/

Welcome to The ME Association, sometimes known as The ME Society."​

On 14 February, I wrote back:

[...] 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) it may also result in confusion.​

The domain names:

www.mesociety.co.uk and www.mesociety.org have already been registered.

I should be grateful if you would confirm, please:

1] Whether the MEA has registered these domain names and if so when?

2] When the text on the MEA's main website was changed to read "Welcome to The ME Association, sometimes known as The ME Society..."

3] Whether the MEA intends to reconsider the appropriateness of the use of the text "Also known as The ME Society..." on the MySpace site which is incorrect and misleading?​

To which Neil replied:

As to the domain names, I understand that you can do a search to find out who registered them. Neither sites seem to be up and working yet but are still under development. I can assure you that the MEA is not currently developing any further websites other than the ones of which you are aware.

As to the ME Society, a small local group in Peterborough calling itself that would appear to be having delusions of grandeur as that name rather suggest a National Charity, such as ours. I do hope that you will take this up with the organisers. It is clearly a matter that requires your investigative talents.

Lovely to hear from you again. Hope you are well.​

In an email a couple of days later, he added:

The text was changed some time ago. For some years we have tried to get many who choose to address us as The ME Society to recognise that we are called an "Association" rather than a "Society". To most newcomers to the world of ME/CFS I guess it makes no difference and that's why they "sometimes call us the ME Society"

I have no objection to the alteration to the MySpace entry, so that it reads "sometimes known as The ME Society"​

Note that there was no mention by Neil of any plans at that point to register another company name with Companies House.

On 7 May 2009, the private limited company: THE MYALGIC ENCEPHALOPATHY SOCIETY LIMITED Company number 06898702 was Incorporated.

PDF: Articles of Association, 7 May 2007


By at least 15 August 2009, the text on the Association's website had been changed to:

"Welcome to The ME Association, also registered as The ME Society."

​

Except it is not registered with Companies House as "The ME Society" per se, but as "THE MYALGIC ENCEPHALOPATHY SOCIETY LIMITED".

"The ME Society" is listed on the Charity Commission site as a "Working name". A search for "The ME Society" returns the ME Association's entry as the first in a list of dozens of ME orgs plus some non ME organisations.

 

Just putting this here for possible future reference:

Whilst reviewing my correspondence with Neil Riley on my old laptop, I came across this from March 2006:

Without going into the context as it involved a named minor's honorary membership of the Association:

I had asked: "Does Ms Flack* have access to the membership list?"

*The late Angela Flack was a trustee at the time.

Mr Riley's response was: She does, as does the world at large, because the membership list of a Company is in the public domain and it is a requirement of our Law that it is not kept .confidential. I suspect you may know this.

 

https://meassociation.org.uk/2025/01/situations-vacant-communications-officer/

"You will help to:

• effectively promote the charity’s services and campaigns.
• monitor social media platforms and answer comments.
• monitor the email account and respond appropriately.
• develop and maintain planned future projects."

 

“Delusions of grandeur” Neil? He’s not a bit circumspect nor respectful.

 

Indeed and he was referring to someone who had been a trustee of the ME Association for a brief period.

Did you also notice the: "I do hope that you will take this up with the organisers. It is clearly a matter that requires your investigative talents. Lovely to hear from you again..."

 

Incredibly supercilious and condescending. There is absolutely no way this guy should be leading any large charity, let alone one dealing with very ill & often vulnerable people. Perhaps there is a whelk stall in need of new leadership...

 

The November 2014 Special Resolution was passed at a General Meeting (formerly known as an EGM), which may or may not have been held on the same day as that year's AGM:
https://dxrevisionwatch.com/wp-content/uploads/2024/12/2014-r.png

 

Nah! I've already posted here or on Twitter/X that I would not trust this board with the running of a whelk stall.

I've only ever eaten one whelk. Many years ago, when I first moved to Dorset, I bought a little dish of whelks from a stall on Poole Quay. I still hadn't finished chewing the first one by the time I'd walked back to the bus station which is a good 15 minute trek up the High Street. It was like trying to masticate a rubber tyre.

 

How he feels that is appropriate is beyond me. Dread to think how he refers to those who are causing him a bit of a headache right now.

The more I see, the less suited I believe he is to any kind of role with any charity. He should skulk off into a deeply resentful retirement.

I’d hazard a guess that a good CEO employed wouldn’t need much handover from him.

 

The Act 2006 says "At least ten years" not that they have to be destroyed after ten years:

 

Looks like whoever is moderating MEA Facebook today has now stripped off all the comments, including Colin Barton's

https://www.facebook.com/1000643212...j1butwmCyXEYKcSn7trRmDR4FGudXF27ZtGl/?app=fbl

The MEA - censoring criticism on social media since 2002.

 

While I was looking for old email correspondence with Neil, I came across this which I had written to a fellow advocate in 2010 regarding the name change to "Myalgic Encephalopathy Association" passed by Special Resolution in 2001.

"As I could not remember the year in which the name change was ratified, the following information has been provided by Tony Britton, ME Association Press and Publicity:

The decision by the ME Association to use the term "myalgic encephalopathy" in their title and company documents dates back almost ten years. [2001]

The decision was discussed by the Association's Scientific and Medical Advisory Panel at the time.

It was also discussed and debated by ME Association members at an EGM (Extraordinary General Meeting).

This resulted in a vote being taken at the EGM on the name change that was held in London on 14 July 2001..

1274 MEA members voted in favour of using the term myalgic encephalopathy. 43 voted against."

​

It's interesting to me because it shows just how much influence the Association had over its membership. I wasn't involved in ME advocacy until mid 2002 but I think I have seen a copy of the magazine that contained several "for and against" opinion pieces on whether the name should be changed.

It's also interesting how many members took the trouble to vote - a total of 1317. Which is far higher than members voting in Special Resolutions for changes to the Articles or for voting in trustee elections.

AYME's membership also went on to vote in favour of formal adoption of the use of "myalgic encephalopathy".

 

they have a number of projects
Current projects

sorry I've not been following this thread but, why don't the MEA liaise with MERUK on research??

 

Also as mentioned above, a November 2014 meeting may have happened over ten years ago, suggesting that material from that meeting no longer has to be kept, however minutes of a meeting are not a true and accurate account till they are accepted as such at a subsequent meeting, so it is likely that any minutes drafted in November were still being processed in 2015, less than ten years ago.

So if the MEA tried not to share such minutes because of the ten year rule, that would seem suspicious and may still be unlawful.