United Kingdom: ME Association news

This is very interesting nugget that has been uncovered. So many people try this strategy of a different surrounding might positively effect their ME and it rarely does anything. Barry Sheene did this moving to Queensland and it did nothing for his physical state. You have to wonder if people have a full blown post infective state and at some point in the first 18 months it clicks off and then people didn’t have ME/CFS at all in reality.

 

In the earlier stages of my ME at a time when I was mild I did find an improvement when I was on holiday, though it was hard to say if this was just doing less in a relaxing environment with meals being provided rather than any actual change in my ME. Always any subjective sense of improvement did not long survive returning to every day life.

I do know of one more dramatic example of a friend who had a holiday on a Greek island and felt so well that after the holiday she left her job and her home and sold up everything to raise enough money to return to the island for six months. Like me this was in the first few years of her ME. It seemed an amazing success and at the end of the six months she believed her self recovered. However on returning home and getting a locum job within two weeks the ME symptoms returned with a vengeance leaving her unable to work and with no assets and no access to employment rights or possible ill health retirement, with what money that was in her pension pot trapped for thirty years till she reach pension age.

Such anecdotes are interesting but unhelpful in planning how to deal with a real life illness, indeed as in the case of my friend they could result in individuals being significantly disadvantaged.

 

I had a year or two of spontaneous recovery apropos of nothing, then started to deteriorate repeatedly until the big one I’ve never recovered from. I’m quite glad it happened when I wasn’t doing anything different that I could peg it to.

 

I briefly spoke to him and from what I remember he felt a little better on cold baths and a few other more specific things but I don’t remember him saying he was cured but it was a long long time ago and I can’t be sure.

 

Maybe it has not occurred to Caroline and others at the MEA that a very large number of sensible physicians are likely to agree that the patients' petition is entirely justified. Maybe the ME has never realised that the organisation itself is probably regarded by the medical profession much in the way it regards the patient community - as a group of self-appointed ill-informed meddlers ultimately likely to do more harm than good.

The irony is that Charles Shepherd has achieved a lot, but the rest of the organisation has made itself a laughing stock.

 

When they announce this major trial next year they think we’ll all have egg on our faces.

 

The tone of wording about people with cognitive symptoms (sounds like they are making a catty remark) in a policy that they must have had weeks or months to get wording right fir and correct at any time seems to belie an attitude towards pwme that I find gross from someone/an organisation that was supposed to be neutral, nevermind for pwme

there’s no excuse for it with them because if someone gets a comment wrong they had minutes snd might amend it directly but their very policy had all the time in the world yet they expect most from the illest which seems to be a sad theme I’m noticing in a lot of advocacy , particularly the old-fashioned stuff , a sort of seeping bigotry towards those most ill as if the more severe embarrass them, can be assumed to not be offering something of worth (let em speak but don't listen just pause then carry on), or I don’t know but it seems like an ogyny because of the almost contempt feeling under it rather than the just ‘ism’ sort of feeling

 

Belittling those with serious concerns is such a good look

People who did that type of language in an office ie behind the backs of eg customers or patients - normally because of bravado to cover their embarrassment but it looks like they don’t take their job seriously - would be ‘noticed’

I’ve never heard - although there probably are a few extraordinary moments over the years (like the Ratner one is quoted a lot but even that was ‘off-record' and was more about his own product rather than really dissing customers) - of people doing this deliberately as a public statement

it’s pretty vile language in the attitude it shows given the very reasonable people who’ve been forced to take very reasonable action of signing a petition is what they are talking about

and it just can’t be accepted anymore - makes me realise what pwme had been put thru has been partly allowed to be encouraged by those supposedly on their side. Speaking for them

you don’t get that voice I’m sorry if at the same time you are cat-swiping those you pretend you represent (but have just shown you don’t)

what a snidey episode From some of them - who on earth do they think they are ?

 

“Heaven forbid”

written in the middle of it

I suspect the attitude coming off it means hopefully everyone is thinking the same - even if they didn’t know the topic

it to me stinks of disdain that is unexplainable and unwarranted

but does seem to be a pattern in tone of voice


Anyway I think given it to me seems to be potentially antagonist/seeking to get people to write something in upset

I’d hope there are good reasons behind it (having comments turned off) - even if that mightnt work either - of not giving someone what they were looking to stoke. Ie by not really allowing much commenting it shows up that the ‘response’ is more someone fighting with them self/a paper bag when you’ve the claims along the lines of the ‘trolling patients’ cliche even when / before any patients have been allowed to speak.

But I don’t know who that request came from - it seems even more outlandish and a power issue if it was demanded from eg one individual etc

as long as they are allowing posts on the topic of ‘what do we do about this’ and indeed for example have details on the AGM and process still being provided and discussed I guess that’s a clue?

 

Does the way Twitter works now it’s X mean that if people post but with a hashtag then that’s something that isn’t as curatable ? Ie how effective a tactic is that for X vs Facebook to close down comment on one thing - does it really work like that there?

 

How transparent are these elections where it happens / what’s the process?

it sounds like from what you’ve said with slips being printed in the magazine everything is done only by that mail-based process? Or does stuff take place in the actual physical meeting too?


I suspect one issue is getting alternatives running who would be more appropriate otherwise you have Hobson choice ..?

which is why the role itself is a concern if it requires geographic proximity and a number of hours most who might be a good fit wouldn’t be in a position to sign up for?

 

These are importantly full stories to be heard because it’s often misinformation in the form of ‘hope’ (and I’m particularly concerned to hear specific bps people trying to use this justification these days and can’t help but think this says a lot about what their gosl is) that places huge social pressure on people and takes away options too

so these fuller stories are exactly what places like MEA should be being allowed to communicate

it’s also I’d guess fundamental to decision about whether people will ever recover. Does this sort of thing happen with other illnesses or does having proper healthcare mean people step in to provide that correct guidance and support ?

 

The board of trustees conducts its day to day business via electronic means and face to face meetings at their head office in Buckingham. Summaries of board meetings (but not the full Minutes) used to be posted on the website.

(I don't know, but I imagine the board now uses Zoom or Teams or similar for some of its board discussions and trustees have participated in face to face board meetings by phone.)

Not all trustees will be able to attend all face to face meetings and if the chairman is unable to attend, the board can appoint another trustee to chair that meeting.

The offices of chairman, deputy chairman, company secretary (if they have one), treasurer etc are appointed by the board, itself, not by the membership.

(These appointments are not set in stone or for a specific duration. For example, if the board felt it appropriate, the current office of chairman could be removed and one of the other trustees designated chairman or acting chairman.)


Annual General Meetings (AGMs) and the occasional Extraordinary General Meetings (EGMs), at which for example, resolutions to make amendments to the governing document may be voted on, are usually held in Buckinghamshire where the Association's head office is.

AGMs and EGMs are attended by some but necessarily all of the existing trustees and by some staff members. In the past, AGMs have sometimes been combined with a medical conference which takes place after the AGM has finished.



Attendance at AGMs:

Historically and understandably, AGMs and EGMs have not been well attended by the membership, even when quite lengthy notice of the date and venue has been published. I don't have recent figures but I would estimate under 50 members attend AGMs in person, based on the pattern of previous attendance figures.

The election process for trustees is carried out at AGMs. Members attending the meeting can cast their votes and these are combined with votes from the postal ballot, for which the ballot slips need to be returned to head office at least 7 days prior to the meeting.

If voting via ballot slip, this means that decisions to vote for or against a trustee nomination or decisions to support or reject a special resolution are made before hearing any discussion at the meeting and based on what information the board has given in the magazine.

The board can make recommendations (or not) about a nominee. The board can also make recommendations to the electorate to vote in favour of a special resolution which they have proposed, themselves, for example, amending clauses or adding new clauses to the Articles of Association, or changing the name of the organisation.

Notice is sent out to the membership of any existing trustees who are due to retire by rotation but are standing again for election (this is what Charles Shepherd, Neil Riley and Ewan Dale have done since they were first elected to the board in 2003/4). Personal statements by new nominees are also included in the magazine.

(The retirement of one third of the existing trustees by rotation used to apply every year; this was amended to every two years for the 2014 version of the Articles of Association.)


As I say, I don't have recent figures but based on earlier years, around 350 members return ballot papers which are added to the votes cast in person at the meetings. So we are looking at around 400 members voting in AGMs and EGMs out of a total electorate of say, 5000-6500.

In order for a special resolution to be passed, 75% of the votes received need to be in favour.


Virtual and hybrid AGM meetings:

As for increasing members' ability to participate in proceedings: charities are permitted to hold virtual or hybrid meetings. However, since special arrangements for secure voting need to be in place, there are guidelines for holding virtual or hybrid meetings by the Charity Commission and the Chartered Governance Institute.

Also, the holding of virtual or hybrid meetings and arrangements for them needs to be included in the Articles of Association. So if the MEA were considering holding virtual or hybrid AGMs and EGMs, the Articles of Association would need amending via special resolution.

If the facility to live stream the meeting via Zoom but not participate in proceedings, per se, or vote in elections or resolutions on the day was introduced, I don't think the board would need to amend the AoA for that.


Resources:

MEA Articles of Association 2014 version attached.

Charity Commission guidance on rules for the holding of AGMs:
https://www.gov.uk/government/publications/charities-and-meetings-cc48/charities-and-meetings

Chartered Governance Institute on Virtual and hybrid meetings:
https://cavs.org.uk/wp-content/uploads/2021/06/virtual-and-hybrid-agms-a-guide-for-charities.pdf

 

As for the December AGM, all I can say at the moment is that it does appear that the meeting is going ahead; that the magazine has already been sent out or will shortly be sent out and that the magazine will confirm whether the date of 9 December still stands or whether the meeting has been rescheduled. The board has 15 months from the last meeting in which to hold its AGM, so they could, in theory, postpone until January, February or March. Or postpone to the week before Christmas.

Until the magazine has been published and the date of the meeting confirmed, I cannot determine whether the meeting would still be invalid under the terms of their governing document.

I maintain that if the date remains set for 9 December it would be invalid on the basis that full details including: time, venue and business to be discussed (ie agenda) were not published in the Autumn issue, which gave only the date. So the 21 clear days' notice will not have been adhered to.

 

If you're correct, what would be the consequences if the MEA went ahead with its AGM, if the MEA choose to ignore the issue? Would PwME or others who are unhappy about it able to impose any consequences?

 

So, from the email I have just had from the MEA, the AGM is going ahead on the 9th.

—

- FOR MEMBERS OF THE ME ASSOCIATION ONLY -

AGM December 2024 Statement

THE ME ASSOCIATION: AGENDA FOR THE ANNUAL GENERAL MEETING

1. CHAIRMAN’S WELCOME
   
   
2. APOLOGIES for absence
   
   
3. MINUTES – Minutes of the last AGM, held by video conferencing and at Unit 7 Apollo Office Court, Gawcott on 11th December 2023 to be put before the Meeting for approval. Their acceptance to be moved by Chairman, a seconder sought and a vote taken.
   
   
4. CHAIRMAN’S REPORT – 2023 as published on the website of the ME Association.
   
   
5. FINANCIAL STATEMENTS – year ended 31 December 2023, available through the website of the ME Association.
   
   
6. INDEPENDENT EXAMINERS (of Accounts) – proposal for the reappointment of Astral Accountancy of Bicester as auditors of the accounts of The ME Association. To be moved and seconded and put to a vote.
   
   
7. ANY OTHER BUSINESS

To be held by Team Video Conferencing and Office at Gawcott at 2.00pm on Monday 9th December 2024

ETA details

 

Members could complain or leave, and any decisions taken at an unconstitutional AGM would be void, I imagine, because technically the AGM didn't happen.

It's harder to say what the practical consequences would be, though. The Charity Commission seems unwilling to act as a regulator unless there are outrageous breaches.

 

Thanks, Kitty. My concern is that even though decisions ought to be void in such a case, I'm not sure that anyone outside the same group of people at the MEA who would have chosen to run an unconstitutional meeting would be in a position to treat those decisions as void in practice.