Questions for the Board of Trustees submitted 8th December 2024

Dear Trustees,

I am a member of the MEA but have Severe ME and am now experiencing PEM, largely from trying to engage with the MEA over important issues and not having any response.

XXXX XXXX  will be attending the meeting for me as my proxy as I do not have the capacity to engage in a discussion with more than one person for 10 minutes and my requests for breaks/timings to be made available were not responded to.

As a member of the MEA and person with Severe ME I would like the Trustees to address the following questions. Please can time be given for members to discuss them at the meeting and answers be given in written format following the meeting.

Kind regards,

Alexis Gilbert 

—----

Neil Riley’s comments

1. Why has there been no direct response to the open letter signed by 1095 people with concerns about Mr Riley’s disparaging and potentially dangerous comments in his editorials?
2. What is the Board’s response to the letter and the subsequent petition with another 1275 signatures (and counting)?
3. Has the Board discussed the letter or petition prior to today? As there is a clear conflict of interest, did a discussion take place with Neil Riley absent? Or did he chair the discussion?
4. What are the Board’s views on Mr Riley’s opinions on movement in ME?
5. Does the Board stand behind all of the comments made by Mr Riley in his editorials?
6. Does the Board agree with the entire statement Mr Riley made on 19 November?
7. The editorial in October was put forward as a personal view but the statements within it are presented as fact. How was it allowed to be published when it goes against everything we know about ME from the best science and research highlighted by your own team? Is there a fact checking system in place for items the MEA publish? Why did it not work here?
8. Did it occur to anyone in the ME association that this could be incredibly offensive and potentially dangerous to a large cohort of patients who are struggling with Severe ME?
9. Did any members of staff express concern at this editorial or the organisation’s response, or lack of, to the letter and petition?
10. Section 27 of the ME association articles states that “a person ceases to be director as soon as…. (h) he or she brings the company into disrepute”. 
a)We know at least 1250 people believe he’s brought the organisation into disrepute. What evidence do you have to the contrary?
b) Please provide the exact number of letters or emails the MEA received supporting the Chairman's comments?
c) Will there be a discussion amongst the Board of trustees (excluding the Chairman) as to whether the terms of 27 (h) have been met? If not, why not?

Financial governance

1. Why were two trustees’ companies paid £31,000 and £11,000 in 2022/23? This goes against common ethical business practices within charities.
a) Who decided to award the contracts to those companies?
b) Have there been any payments in 2024 to trustees or companies owned by/employing trustees?
2. Why is the MEA not in compliance with conflict of interest guidance from the national charity commission and their own Articles of Association? 
a) Why is the conflict of interest policy not published on the website and any conflicts made clear to members?
3. Campaigns
a) Did the Director of communications (Martine Ainsworth-Wells) sign off on the PR campaign commissioned from her company for £31k? If not, who approved this spending?
b) Who provided the oversight for this?
c) Who negotiated those contracts from within MEA and from within the companies?
d) Were any other companies considered and what were their quotes for the delivery of the same work? If not, why not?
4. Information Technology
a) Does David Allen remain head of IT for MEA as stated on the website?
b) Who signs off on contracts and purchases for ICT equipment and services?
c) Who provides oversight for this?
5. How does this fit with the MEA’s conflict of interest policy and good governance in general? Who heads the committee providing oversight?
6. Why is the MEA sitting on reserves of £3 million when Long Covid numbers are rocketing and research into energy-limiting conditions is more vital than ever?

Leadership

⁠1. Why doesn’t the MEA have a CEO to provide strategic leadership and direction independently of the Trustees, whose role is to provide oversight?
2. Four of the 7 Trustees and associate Trustees have been in place for over 10 years. The Chair has been in place for 20 years. National charity guidelines recommend limiting terms to 9 years.
a) Why are there only 7 Trustees and not more like most charities this size? 
b) When and where do you advertise for Trustees beyond your own publications and website?
c) Why is MEA not following best practice from charity commission to renew its trustee base and bring in new talent and innovation?
3. Why is the Board 75% male when ME affects 80% women?
4. Why was Georgina Evans’ trustee status terminated in Oct 2024?
a) Please give reasons for her resignation or dismissal?
b) Why was no announcement made or members informed? 

General

1. Where is the Chairman’s report for 2024 - the link provided was published a year ago for a report on 2023?
2. How many members attended your last AGM? 
3. Why is the AGM not open to everyone and made accessible? The onus should not be on members to have to email you to get details, they should be published openly online, as well as in the magazine, and require effort to search them out. 
4. Please commit to providing details of the following to members for all future meetings: log-in details, clear timings and lengths of business, and breaks to make meetings accessible for those with more serious disability. Documents should be made available a month in advance and accessible using a screen reader.

AGM SIGN IN DETAILS - 9/12/24, 14:00 GMT
https://us06web.zoom.us/j/83207731135?pwd=w7rohdPgqScotg8bzujRSJyOMd8XIc.1
Meeting ID: 832 0773 1135
Passcode: 730576

Links
Animals need to move by Neil Riley https://bit.ly/MEAcolumn
Mr Riley 19 Nov statement  https://bit.ly/Statement19NovMEA
Open letter      https://bit.ly/readandsign
Sick Times article    https://bit.ly/SicktimesMEA
Petition       https://www.bit.ly/neilrileypetition