United Kingdom: ME Association news

I did receive a zoom link today.

 

365 signatures so far on the petition for Neil Riley to step down as MEA chair

 

400 now.

 

Dear Suzy

Thank you for contacting me.

Will you please confirm if you are a member of The ME Association as I cannot find your email address on our records.

If you are a member, will you please reply with your membership number and postal address plus any other email addresses we may have recorded on your records.

I look forward to hearing from you.

Kind regards etc



-----Original Message-----
From: Suzy Chapman <redacted>
Sent: 03 December 2024 17:54
To: Admin - Office <admin@meassociation.org.uk>
Subject: Re: Video access for AGM

Dear MEA,

I should like to register an interest in accessing the AGM meeting on 9 December via video link.

I am not a member of the Association.

I should be pleased if you can send me the link for video access, plus instructions for access, the Agenda and any other materials that are being made available to those accessing the meeting.

Kind regards,

Suzy Chapman

 

This morning, I have written back to the office pointing out that I had stated in my initial email that I was not a member of the Association.

I have also asked that the BoT give consideration to making a recording of the proceedings available to members and non members, given that arrangements for this year's AGM have fallen short of good charity practice as per their governing document, Charity Commission and NCVO.

 

https://twitter.com/user/status/1865022312350711967


Dx Revision Watch
@dxrevisionwatch
Petition currently stands at 911. If you haven't already signed, then please sign today. Thank you Alexis and I hope you're getting some rest.

 

I just looked this up out of curiosity:

“We have around 5,000 paid-up members who receive our quarterly magazine ME Essential. We receive funds and support from members and an increasing number of non-members. Support for the ME Association continues to grow, most often by non-traditional methods e.g. social media.”

https://meassociation.org.uk/missio...,000 paid,our quarterly magazine ME Essential.

 

Shame on them for using "non-traditional methods e.g. social media" to shut down comments. More comments hidden on MEA Facebook and still blocking comments on posts relating to Monday's AGM and the Neil Riley issue.

And some members are still waiting for their video link to to be sent to them.

 

https://twitter.com/user/status/1864784633130361075


Apparently at last year’s @MEAssociation AGM only 1 member attended - an ME Assn employee.

That is shameful.

 

Perhaps then it is not surprising that the board feel they can decide themselves what the views of the membership are or even should be.

However, ignoring the current issues, without an active pool of supportive members, any group totally dependent a small number of active but aging trustees and no one in the wings to step up faces a very uncertain future. Whether intentional or not I wonder if the ongoing approach of the board has in effect selected for a passive membership.

 

And yet AfME had a public AGM online, recorded it & it is now on YouTube

https://www.youtube.com/watch?v=lytzO5gFXwk

So it's not impossible?

 

I found a 2019 complaints procedure document. Under the Governance and Operational Policy tab a number of policy documents are linked to, including "ME Association Grievance Procedures" but that one is for staff.

But a Google search threw up this six page document which is for complaints from members and carers.


https://www.meassociation.org.uk/wp-content/uploads/MEA-Grievance-Procedures-14.06.2019.pdf

THE M.E. ASSOCIATION GRIEVANCE PROCEDURE
14/06/2019

Part 1. INTRODUCTION

The trustees & staff of the M.E. Association (MEA) will do whatever they can to make sure you get quick, fair and proper treatment in all your dealings with us. However, sometimes things can go wrong, and you might not be happy as a result. If you are not happy with the MEA, you can make a complaint or a suggestion to improve our service. This policy sets out a framework for the management of complaints within the MEA.

1. General Principles

• The grievance procedure will be accessible to members, their relatives and carers and, except as stated below, trustees and staff
• The MEA will respond in a quick, sensitive open & transparent way to the complaints it receives
• The grievance procedure will be supportive for those who may find it difficult to complain
• The grievance procedure will be fair to everyone
• The lessons learned in grievance resolution will be used to improve services

2. Who may complain?
2.1 Complaints may be made by anyone, except present or past trustees whose grievance relates in any way to their role as a trustee and except staff in their role as employees of The MEA. Complaints may be made on a complainant’s behalf with the complainant’s written consent

3. Time limit on initiating complaints
3.1 A complaint should generally be made within six months from the incident that gave rise to it, or within six months of the date of discovering the problem, provided that it is within twelve months of the incident etc.

4. Who deals with complaints?
4.1 The complaint shall be dealt with by such of the trustees or a member of staff (whether paid or unpaid) as shall be appointed by the Chairman of the Board of Trustees (“The Chairman”). Unless the complaint is about the Chairman he/she can investigate the complaint.

5. Member, staff or trustee confidentially.
5.1 The consent of members, staff or trustees is not required to use information pertaining to a complaint etc.

(...)

12. Publicity
12.1 The MEA will ensure that members, staff and trustees are aware of its Grievance Policy and Procedures.

Full document here

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


This has reminded me that back in 2004, the board abruptly terminated correspondence regarding my complaint following the board's decision to twice deny me membership of the Association (a decision minuted in a meeting of the board of trustees) by publishing a notice on their website signed by Chairman Neil Riley stating that following protracted communications they were no longer prepared to further engage with Suzy Chapman. This notice sat on their website for some weeks before it was taken down.

Job done.

 

I am confused by the apparent contradiction between:

The grievance procedure will be accessible to members, their relatives and carers

and

Complaints may be made by anyone, … … . Complaints may be made on a complainant’s behalf with the complainant’s written consent.

Does this mean that complainants can only be made by members and their immediate associates or that anyone at all (other than the trustees staff limitations) can make a complaint?

 

I read it as complaints can be made by anyone (other than staff and trustees) and also a third party may make a complaint on behalf of someone else.

 

The petition requesting the removal of the chair is now over 1,150.

 

Why did they deny you membership??

 

Back in 2002, when I first became involved with ME message boards and forums, the UK online community was much smaller, closer knit and had considerably fewer platforms than are available to us now. In 2002, three charity orgs, AfME, AYME and the MEA launched a forum called "MEssageUK".

This was the era of Chris Clark (AfME) and Val Hockey (MEA). AfME and AYME pulled out of the forum not long after launching, probably because of the criticism there were receiving. That left only the MEA. Charles Shepherd was still the MEA's paid Medical Adviser and was a poster on the forum. Tony Britton was the main moderator, assisted by the late Christine Llewellyn. So I was known to the MEA.

The were many concerns about how AfME and the MEA were being managed at that time and the MEA got fed up with critical posts and ME politics and introduced a "no ME politics" rule. I set up a Yahoo group as an alternative platform where constructive criticism was welcomed.

It became evident that the moderators of the MEA's forum were stripping out old, critical posts. In late 2003, just a day or two before the December trustee elections in which Charles Shepherd was standing (having been sacked by the MEA that May for whistleblowing), the MEA's forum was suddenly and inexplicably closed down and there was no opportunity to archive our posts.

In December 2003, Dr Shepherd was elected to the MEA's board of trustees along with Christine Llewellyn, who was a member of my own forum. The early days of this small, mostly new MEA board, following Val Hockey's redundancy, were mired by a lack of transparency. I and a handful of associates asked awkward questions; raised our concerns on the Co-Cure Listserv and other platforms, and generally pushed for greater transparency and accountability.



In 2004, the person who owned the now defunct ONE CLICK Campaign website requested a copy of the Member's Register, which at that point there was a legal right for anyone to request. The MEA put a notice in their magazine warning members that they might be contacted directly. However, the Register was not provided. (The MEA was concerned that members might be approached to support the calling of an EGM.)

In June 2004, I mentioned on my own forum that I had applied for membership of the MEA. I had not previously been a member.

Applications for membership were usually processed by the admin staff at the MEA's head office. Evidently Christine Llewellyn intercepted my application, held it back and discussed it with the other board members. My application form and cheque were returned a few days later with a covering letter saying that the board had decided to deny me membership. A second application was tabled for discussion at the December 2004 meeting of the board and was minuted as having been rejected again.

I lodged a complaint which was never resolved. They would give no reason for not admitting me to membership and at one point they sat on a cheque for weeks before finally returning it. I asked for copies of all communications and documents which had informed their decision but they refused to provide anything. So there was no official reason ever given for denying me membership of the Association and my complaints reached an impasse.


Unofficially, Christine Llewellyn told a former associate of mine that she was concerned that if I was admitted to the membership I might assist with the calling of EGMs or stand for election to the board (which I had no intention of doing) and that I would be a disruptive influence if I were to become a member. Evidently, a sufficient number of the other trustees were persuaded that I was a potential danger to the stability of the organization. Also Christine and some of the other trustees did not like the company I kept. One trustee told me that she had voted against my being barred from membership but that all applications were approved by the board. This was not the case*.

In 2005 a number of resolutions were passed via EGM and postal ballot giving the board tighter control over who could stand for election, including that only members of the Association could stand. Prior to the change, non members could be nominated for trustee elections on the understanding that they would become members after successful election to the board.

They also added this clause to the 2005 version of the Articles:

28.2 (b) The Board of Trustees will have the right to take up references and undertake interviews of nominees to the Board of Trustees and to make recommendations and provide information to the members of the Charity concerning any nominee
​

*This clause was added to the 2014 version of the Articles:

29. No person shall become a member of the company unless they are 18 years of age and:

(a) that person has completed an application for membership in a form approved by the directors, and
(b) the directors have approved the application.

​

Are we expected to believe that all applications for membership are put before the board for approval and if so, on what do they base their decisions?

 

It is clarifying that this is a grievance procedure for members (and/or their careers)- and not to be confused with the grievance procedure for employees.
Presumably non- staff and non- members would follow an organisation’s complaints procedure?