United Kingdom: ME Association governance issues

Arvo said:
You think it might be found in a library? Doesn't the Wellcome Collection hold old coplies of the ME Association magazine?
Edited to add: I know you have been looking for it before. I also seem to remember that RoyalFree1955 had access to old copies of the magazine at a library.
Click to expand...

No idea what institutions have kept copies and they may no longer have a loose slip in them and sometimes the slip was on the back of the address label.

Edited to add: *facepalm*:facepalm:, of course the ME Association can provide a copy of the voting slip in the magazine themselves.
Click to expand...

Yes, I would think the MEA kept a copy of the voting slip (or the artwork for them).
 
It makes me wonder when they were drafting the text of the 2014 Resolutions, they did not refer to what they had already adopted in 2013. If they had looked closely at the 2013 Articles, they would have seen that they had already provided for trustee retirements every two years and that they had already changed article 28.

Did they mean only to change "2000 Charity Act" to "Trustee Act 2000" in 2014 but got muddled and put three Resolutions out for a second time when they had no need to do so?
 
Last edited:
Dx Revision Watch said:
Did they mean only to change "Charity Act 2000" to "Trustee Act 2000" in 2014 but got muddled and put three Resolutions out for a second time when they had no need too?
Click to expand...

It seems more likely to be cock-up than conspiracy. It's easy to read motivations into things after the fact, but most mistakes are just that. Usually if people are really trying to subvert something, they're careful not to leave inconsistencies that raise questions.
 
Regarding us supplying Minutes from before 2015: The Data Protection Act and one of the 7 principles of the GDPR requires us to dispose of personal data once it is not needed. The Companies Act requires us to keep records for up to 10 years. To comply with the Law, the Minutes before 2015 contain personal data (names etc.) that we have had to redact before publishing it. Those 2013 and 2014 and Minutes are now published on our website within the Policies and Procedures Section, Reports and Statements, AGM, with appropriate redaction.
Click to expand...


Something I don't understand.

Given there has been a summary report of the 2013 AGM/EGM on the MEA's site since late 2013/early 2014 which includes the names of the trustees and admin staff who had attended those meetings (and likewise for 2011 and 2012):

2011 AGM Summary Report:

https://meassociation.org.uk/2011/11/9301/

2012 AGM Summary Report:

https://meassociation.org.uk/2012/1...-meetings-in-december-2012-including-the-agm/

2013 AGM and EGM Summary Report:

https://meassociation.org.uk/2013/11/summaries-of-our-agm-egm-and-board-of-trustees-meetings-ramsay-research-fund-update-november-2013/


why did the names of the trustees and admins need to be redacted before providing the Minutes of the 2013 AGM/EGM and 2014 AGM/OGM, when the names of the attendees of these meetings were already in the public domain and when the names of trustees/officers of the organisation during those periods are publicly available on Companies House?

Note: I am not talking about redaction of names of membership attendees as these are not in any case included in the Minutes or in summary reports of meetings.
 
Last edited:
Brief update:

The week before Christmas, Neil Riley had told Peter that the board had contacted Companies House and "explained the error in the attachment of the pre-2013 version of the Articles to the 2014 November Resolution"; that Companies House had asked them to submit the necessary forms to correct the error and that the forms would be submitted shortly.

This was over six weeks ago.

I have been checking the MEA's CH Filing History regularly and no new file containing the "correct 2014 Articles" has been filed after the most recent entry (which is dated 25 Oct 2024: "Termination of appointment of Georgina Evans as a director on 20 October 2024") and no corrected Articles or redirection notice for a corrected file has been registered and inserted above the existing 2014 entry: "04 Dec 2014 Resolution of adoption of Articles of Association".

One assumes that the MEA's request for the correction of a mis-filed document is still being processed.

Since the new year, I have been tied up with domestic admin work but have had some further correspondence with Neil Riley. Mr Riley appears reluctant to provide meaningful responses to questions put to him.

The last time I replied to him, he had responded (on 22 January):

I presume from your query that you wish to ensure that the new Articles were passed in accordance with the requirements of the Companies Act.​

You have seen the documents that we have put up on our website which confirm this.​

Are you now querying that this is not the case?​


I replied (and copied in David Allen, Deputy Chair) on 22 January:

Subject: Re: Having scrutinised the 2013 EGM Minutes and the 2014 OGM Minutes it still does not make sense
Date: Wed, 22 Jan 2025 16:37:13 +0000
From: Suzy Chapman [Redacted]
To: Neil Riley [Redacted]
CC: Charles Shepherd; Russell Fleming; David Allen


Dear Neil,

No, Neil, I am not querying whether "the new Articles were passed in accordance with the requirements of the Companies Act".

What I am querying is why in November 2014, three Resolutions were put out to membership vote when the same Resolutions had already been put out to vote and passed in November 2013.

In November 2013 the membership had been asked to vote on the following:

1 Adoption of the new model form.
2 The change of "annually" to "Every two years" for retirement of Directors by rotation (article 24).
3 Changes to article 28: Allowed Payments​

In November 2014 the membership was asked to vote again on the following:

1 Adoption of the new model form.
2 The change of "annually" to "Every two years" for retirement of Directors by rotation (article 24).
3 Changes to article 28: Allowed Payments​

All I am asking for is an explanation as to why these three changes were put to the vote again in November 2014 when they had already been passed in November 2013.

That is all.

With kind regards,

Suzy

----------------------------------------------------------------------

Neil's response (22 January) was:

Dear Suzy

I wonder, if I might, ask you a question for a change.

Why?

Best wishes,

Neil

----------------------------------------------------------------------

It's like wading through treacle...

I'll be writing to the board again this coming week.
 
"explained the error in the attachment of the pre-2013 version of the Articles"
Click to expand...

It remains unclear what Mr Riley means by the "pre-2013 version of the Articles".

The version of the Articles prior to the 2013 Articles is the 2007 Articles which had not used the "new model form" and which differs from the 2013 version and the 2014 version in a number of clauses (including Article 28) and is unlikely, in my view, to have been confused with the version of the 2014 Articles that had been put out for membership vote. The 2007 Articles are also dated.

I can only assume he means an early draft of the 2013 Articles as filed with Companies House - but who knows.
 

Attachments

Last edited:
Dx Revision Watch said:
Brief update:

The week before Christmas, Neil Riley had told Peter that the board had contacted Companies House and "explained the error in the attachment of the pre-2013 version of the Articles to the 2014 November Resolution"; that Companies House had asked them to submit the necessary forms to correct the error and that the forms would be submitted shortly.

This was over six weeks ago.

I have been checking the MEA's CH Filing History regularly and no new file containing the "correct 2014 Articles" has been filed after the most recent entry (which is dated 25 Oct 2024: "Termination of appointment of Georgina Evans as a director on 20 October 2024") and no corrected Articles or redirection notice for a corrected file has been registered and inserted above the existing 2014 entry: "04 Dec 2014 Resolution of adoption of Articles of Association".

One assumes that the MEA's request for the correction of a mis-filed document is still being processed.

Since the new year, I have been tied up with domestic admin work but have had some further correspondence with Neil Riley. Mr Riley appears reluctant to provide meaningful responses to questions put to him.

The last time I replied to him, he had responded (on 22 January):

I presume from your query that you wish to ensure that the new Articles were passed in accordance with the requirements of the Companies Act.​

You have seen the documents that we have put up on our website which confirm this.​

Are you now querying that this is not the case?​


I replied (and copied in David Allen, Deputy Chair) on 22 January:

Subject: Re: Having scrutinised the 2013 EGM Minutes and the 2014 OGM Minutes it still does not make sense
Date: Wed, 22 Jan 2025 16:37:13 +0000
From: Suzy Chapman [Redacted]
To: Neil Riley [Redacted]
CC: Charles Shepherd; Russell Fleming; David Allen


Dear Neil,

No, Neil, I am not querying whether "the new Articles were passed in accordance with the requirements of the Companies Act".

What I am querying is why in November 2014, three Resolutions were put out to membership vote when the same Resolutions had already been put out to vote and passed in November 2013.

In November 2013 the membership had been asked to vote on the following:

1 Adoption of the new model form.
2 The change of "annually" to "Every two years" for retirement of Directors by rotation (article 24).
3 Changes to article 28: Allowed Payments​

In November 2014 the membership was asked to vote again on the following:

1 Adoption of the new model form.
2 The change of "annually" to "Every two years" for retirement of Directors by rotation (article 24).
3 Changes to article 28: Allowed Payments​

All I am asking for is an explanation as to why these three changes were put to the vote again in November 2014 when they had already been passed in November 2013.

That is all.

With kind regards,

Suzy

----------------------------------------------------------------------

Neil's response (22 January) was:

Dear Suzy

I wonder, if I might, ask you a question for a change.

Why?

Best wishes,

Neil

----------------------------------------------------------------------

It's like wading through treacle...

I'll be writing to the board again this coming week.
Click to expand...
My word, why is he being so difficult?

You, and others here, have asked valid questions about this, yet, he's still trying to be smart? 'Why?'. Just answer the bl**dy questions man!

So far, he and the board have still not fully explained the sequence of events to to satisfaction of those who they suggest they represent.

It's like he's goading you to suggest that they have done something wrong so he can issue another threatening letter to take 'action' or however it was worded in the statement sent to Peter W.

Thanks for keeping at this Suzy.

PS. I wonder if they have appointed the independent governance person they said they were going to. Can't see any advert on their website to get someone.
 
Dx Revision Watch said:
Brief update:

The week before Christmas, Neil Riley had told Peter that the board had contacted Companies House and "explained the error in the attachment of the pre-2013 version of the Articles to the 2014 November Resolution"; that Companies House had asked them to submit the necessary forms to correct the error and that the forms would be submitted shortly.

This was over six weeks ago.

I have been checking the MEA's CH Filing History regularly and no new file containing the "correct 2014 Articles" has been filed after the most recent entry (which is dated 25 Oct 2024: "Termination of appointment of Georgina Evans as a director on 20 October 2024") and no corrected Articles or redirection notice for a corrected file has been registered and inserted above the existing 2014 entry: "04 Dec 2014 Resolution of adoption of Articles of Association".

One assumes that the MEA's request for the correction of a mis-filed document is still being processed.

Since the new year, I have been tied up with domestic admin work but have had some further correspondence with Neil Riley. Mr Riley appears reluctant to provide meaningful responses to questions put to him.

The last time I replied to him, he had responded (on 22 January):

I presume from your query that you wish to ensure that the new Articles were passed in accordance with the requirements of the Companies Act.​

You have seen the documents that we have put up on our website which confirm this.​

Are you now querying that this is not the case?​


I replied (and copied in David Allen, Deputy Chair) on 22 January:

Subject: Re: Having scrutinised the 2013 EGM Minutes and the 2014 OGM Minutes it still does not make sense
Date: Wed, 22 Jan 2025 16:37:13 +0000
From: Suzy Chapman [Redacted]
To: Neil Riley [Redacted]
CC: Charles Shepherd; Russell Fleming; David Allen


Dear Neil,

No, Neil, I am not querying whether "the new Articles were passed in accordance with the requirements of the Companies Act".

What I am querying is why in November 2014, three Resolutions were put out to membership vote when the same Resolutions had already been put out to vote and passed in November 2013.

In November 2013 the membership had been asked to vote on the following:

1 Adoption of the new model form.
2 The change of "annually" to "Every two years" for retirement of Directors by rotation (article 24).
3 Changes to article 28: Allowed Payments​

In November 2014 the membership was asked to vote again on the following:

1 Adoption of the new model form.
2 The change of "annually" to "Every two years" for retirement of Directors by rotation (article 24).
3 Changes to article 28: Allowed Payments​

All I am asking for is an explanation as to why these three changes were put to the vote again in November 2014 when they had already been passed in November 2013.

That is all.

With kind regards,

Suzy

----------------------------------------------------------------------

Neil's response (22 January) was:

Dear Suzy

I wonder, if I might, ask you a question for a change.

Why?

Best wishes,

Neil

----------------------------------------------------------------------

It's like wading through treacle...

I'll be writing to the board again this coming week.
Click to expand...
I dare you to reply “because”
 
Fainbrog said:
...It's like he's goading you to suggest that they have done something wrong so he can issue another threatening letter to take 'action' or however it was worded in the statement sent to Peter W.
Click to expand...

Yep.

When I do write again, I'll be directing my question to David Allen, the Deputy Chair. I have exhausted my patience with Mr Riley and his deliberate obfuscation.
 
Dx Revision Watch said:
Brief update:

The week before Christmas, Neil Riley had told Peter that the board had contacted Companies House and "explained the error in the attachment of the pre-2013 version of the Articles to the 2014 November Resolution"; that Companies House had asked them to submit the necessary forms to correct the error and that the forms would be submitted shortly.

This was over six weeks ago.

I have been checking the MEA's CH Filing History regularly and no new file containing the "correct 2014 Articles" has been filed after the most recent entry (which is dated 25 Oct 2024: "Termination of appointment of Georgina Evans as a director on 20 October 2024") and no corrected Articles or redirection notice for a corrected file has been registered and inserted above the existing 2014 entry: "04 Dec 2014 Resolution of adoption of Articles of Association".

One assumes that the MEA's request for the correction of a mis-filed document is still being processed.

Since the new year, I have been tied up with domestic admin work but have had some further correspondence with Neil Riley. Mr Riley appears reluctant to provide meaningful responses to questions put to him.

The last time I replied to him, he had responded (on 22 January):

I presume from your query that you wish to ensure that the new Articles were passed in accordance with the requirements of the Companies Act.​

You have seen the documents that we have put up on our website which confirm this.​

Are you now querying that this is not the case?​


I replied (and copied in David Allen, Deputy Chair) on 22 January:

Subject: Re: Having scrutinised the 2013 EGM Minutes and the 2014 OGM Minutes it still does not make sense
Date: Wed, 22 Jan 2025 16:37:13 +0000
From: Suzy Chapman [Redacted]
To: Neil Riley [Redacted]
CC: Charles Shepherd; Russell Fleming; David Allen


Dear Neil,

No, Neil, I am not querying whether "the new Articles were passed in accordance with the requirements of the Companies Act".

What I am querying is why in November 2014, three Resolutions were put out to membership vote when the same Resolutions had already been put out to vote and passed in November 2013.

In November 2013 the membership had been asked to vote on the following:

1 Adoption of the new model form.
2 The change of "annually" to "Every two years" for retirement of Directors by rotation (article 24).
3 Changes to article 28: Allowed Payments​

In November 2014 the membership was asked to vote again on the following:

1 Adoption of the new model form.
2 The change of "annually" to "Every two years" for retirement of Directors by rotation (article 24).
3 Changes to article 28: Allowed Payments​

All I am asking for is an explanation as to why these three changes were put to the vote again in November 2014 when they had already been passed in November 2013.

That is all.

With kind regards,

Suzy

----------------------------------------------------------------------

Neil's response (22 January) was:

Dear Suzy

I wonder, if I might, ask you a question for a change.

Why?

Best wishes,

Neil

----------------------------------------------------------------------

It's like wading through treacle...

I'll be writing to the board again this coming week.
Click to expand...

ugh . that reply comes across as game playing
 
I’m a long term lurker but this is my first post. I know somewhere in this thread old copies of Perspectives have been mentioned (but can’t remember who by?). I have some that I am planning to put out for recycling but thought I’d offer them here first. It’s taken me a while to go through them & I only flicked through most of them but I did see at least 1 other editorial by the chairman that I thought was a bit questionable (touching on the matter of members pushing themselves physically to raise funds for the charity if I remember correctly. I am severe & quite fuzzy in the head though so not 100% sure if I’ve remembered right!).
I also have some magazines from other charities & will post them below, with the years I have available in case anyone wishes them.
Free, although postage would be appreciated. I’m in the UK.

Perspectives (The ME Association):
1996 - 2004
2010 - 2017

Interaction (Action for ME):
1998 to 2016

Cheers extra (AYME. This is the supplement for parents/ adult supporters):
1997 to 2004
Link (this is what Cheers extra was renamed):
2004 to 2012

TYMES (TYMES Trust):
1998 to 2010
 
Jonathan Edwards said:
I think that is a bit different. There have been people who insist on using the term ME. There still are. Very recently I think this was Forward ME policy.

The problem with that has been that ME was being used to mean the wrong illness. The claim was that it was a 'neurological disorder' as stated by WHO. But almost certainly that got into the WHO classification in relation to Acheson's ME, which was the acute illness with neurological signs that occurred at the Royal Free. A lot of people still think that is the same as ME/CFS and it isn't at all.

So MacDonald is complaining about a very real and seriously misleading habit by certain people in the charity sector, leading patients to believe they had brain inflammation and were at risk of paralysis or death from brain damage. Which they aren't.

It may be acutely relevant to the story of Maeve B O'N. One of her doctors said she would be dead anyway in 8 months so there was no harm in letting home to die or something like that. Serious misconceptions have become very widespread because of the insistence on ME.
Click to expand...



I think Calling the illness m,e versus Chronic Fatigue syndrome is Something probably all those who are severely affected do. I’m not going to refer to my level of dysfunction/ distress from physical symptoms as chronic fatigue or support that name when it is trivialising and was encouraged for use in this country by psychiatrists, who thought it would better leave it open to psychological interpretation. The same psychiatrists then widened the criteria of Chronic Fatigue syndrome to be less of a complex physical illness as in fukuda, into essentially chronic fatigue. As far as I am concerned, going into hospital and stating Chronic Fatigue syndrome would be the fast ticket to terrible care.

MacDonald, with the views equivocal on physical/ psychological etc imo shouldn’t have been in the MEA and it’s puzzling how she got there. I think Melvin Ramsey objected to the name Chronic Fatigue syndrome To replace m.e. & possibly also blocked Simon Wessely, who had been trying to join the MEA

I disagree with what you said about harm to Maeve, There are serious neurological issues, if not damage (do we know yet? ) that can occur at the very severe end of the spectrum, like light sensitivity, hypertonia, and loss of speech and swallowing. I’ve heard of two women who were only able to move their fingers for a long time, and Lynn Gilderdale, who was a famous case, might have been paralysed from the waist down. I think it was a big problem for patients thaf ME was trivialised by false framing, including an improper name, and thattrivialisation is why there were no treatments for Maeve, at any stage. I don't agree that May should have been told she would just die but I'm not sure of the origin of that. From my experience and what I’ve observed, thousands of people in the UK are living with severe and lifelong disabilities & harm from doctors’ misapprehension of this illness as a non-serious chronic fatigue with unknown, unimportant, and possibly psychological causes .
 
Starrymist said:
I’m a long term lurker but this is my first post. I know somewhere in this thread old copies of Perspectives have been mentioned (but can’t remember who by?). I have some that I am planning to put out for recycling but thought I’d offer them here first. It’s taken me a while to go through them & I only flicked through most of them but I did see at least 1 other editorial by the chairman that I thought was a bit questionable (touching on the matter of members pushing themselves physically to raise funds for the charity if I remember correctly. I am severe & quite fuzzy in the head though so not 100% sure if I’ve remembered right!).
I also have some magazines from other charities & will post them below, with the years I have available in case anyone wishes them.
Free, although postage would be appreciated. I’m in the UK.

Perspectives (The ME Association):
1996 - 2004
2010 - 2017

Interaction (Action for ME):
1998 to 2016

Cheers extra (AYME. This is the supplement for parents/ adult supporters):
1997 to 2004
Link (this is what Cheers extra was renamed):
2004 to 2012

TYMES (TYMES Trust):
1998 to 2010
Click to expand...


Hi Starrymist,

The specific back issues of ME Essential that I would be very interested in having copies of (if you've got them) are these:

August/Autumn/Winter 2013 and early 2014 issues of ME Essential.

August/Autumn/Winter 2014 and early 2015 issues of ME Essential.


What I am looking for specifically are the notices and ballot slips for the November 2013 EGM Resolutions and the November 2014 OGM Resolutions to vote on changes to the Articles of Association plus any editorials discussing or setting out the Resolutions and why the Board were recommending the changes that were being put out for membership vote in those two years.

I know an announcement appeared in the August 2013 issue of ME Essential magazine as this is mentioned in this Board Meeting summary: https://meassociation.org.uk/2013/09/17332/

Also any editorials in the Spring 2014 and Spring 2015 issues which may contain reports on the November 2013 EGM and the November 2014 OGM.

If you have got any of these issues and would be up to sending them to me, I would gladly reimburse the postage. (I would not need the entire magazines, just the pages of interest to me).

I've PM you.
 
Last edited:
Dx Revision Watch said:
Hi Starrymist,

The specific back issues of ME Essential that I would be very interested in having copies of (if you've got them) are these:

August/Autumn/Winter 2013 and early 2014 issues of ME Essential.

August/Autumn/Winter 2014 and early 2015 issues of ME Essential.


What I am looking for specifically are the notices and ballot slips for the November 2013 EGM Resolutions and the November 2014 OGM Resolutions to vote on changes to the Articles of Association plus any editorials discussing or setting out the Resolutions and why the Board were recommending the changes that were being put out for membership vote in those two years.

I know an announcement appeared in the August 2013 issue of ME Essential magazine as this is mentioned in this Board Meeting summary: https://meassociation.org.uk/2013/09/17332/

Also any editorials in the Spring 2014 and Spring 2015 issues which may contain reports on the November 2013 EGM and the November 2014 OGM.

If you have got any of these issues and would be up to sending them to me, I would gladly reimburse the postage. (I would not need the entire magazines, just the pages of interest to me).

I've PM you.
Click to expand...
Please retain all and our Group would welcome them all as an archive!

Suffolk Youth & Parent Support.

Most are not available on line.
Have to pay postage delivery costs.
Or arranged collection...
Will DM you.
 
InitialConditions said:
Probably for the best.
Click to expand...
Agreed, 100%.

It's a shame it has taken so long - it was clear late last year that his position was untenable and he has done untold damage by staying put and digging in. However, let's hope a more positive path can be forged by the next Chair with a more conciliatory approach to the ME community to try to build bridges and renew trust in the charity.
 
You must log in or register to reply here.
Back
Top Bottom