United Kingdom: ME Association governance issues

Chestnut tree said:
If I were a patient organization;
- I would be lobbying government for better care and research
- I would be setting up a framework for research and fund research
- I would be networking with all the ICB boards to work with NICE guidelines asap
- I would do mass media campaigns to get the public informed on the disease and let people know if you are newly ill rest to prevent damage

Instead MEA decides to be confrontational and insulting to patients.

Why are they choosing to have a discussion (with patients!) on resting versus activity?

I think patients that are ill for longer know very well to pace themselves within their energy envelope.

instead they should be putting the word out to the public at large that too strenuous activity after acute infection can keep you ill.

I wonder where I would be if I had been warned about this.
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In their defence...
"- I would be lobbying government for better care and research" - They are doing this far more than is visible to most members/public, as are the other charities. Sadly it's largely falling on deaf ears.
"- I would be setting up a framework for research and fund research" - They are funding research including key infrastructure projects like the ME Biobank and Brain Bank and the Ron Davis follow up. They are supporting efforts such as the open letter on a research consensus along with the other charities.

"- I would be networking with all the ICB boards to work with NICE guidelines ASAP "- This is a really big thing to take on and they had hoped ICBs would do it without intervention so were slow to act. Their new "special project" is a pilot in Bucks and they also helped in Suffolk I believe.
"- I would do mass media campaigns to get the public informed on the disease and let people know if you are newly ill rest to prevent damage" - I don't think they see this as their remit/scope. I'd say they definitely lack skills in this space and shouldn't be attempting such a thing. A lot could go wrong if this was mishandled. I think it would need multi charity cooperation to fund and execute effectively as well as specialist comms expertise as the messages are very nuanced. Their Dr's surgery campaign is their first effort in this space and we have yet to see if it has any actual impact or what, if any, marketing objectives they have measured to evaluate campaign performance.

I'm not especially a fan, totally recognise the major organisational problems that people have flagged here and I think they've handled this particular issues hopelessly (especially with my professional hat on) but I do think there's a risk of becoming too critical and negative. Despite the odd sizeable gaffe caused by being out of touch or having a blinkered attitude, they do do a lot of positive work and are very respected by key institutions.
 
Jonathan Edwards said:
But the problem we have is that nobody knows, surely. And if each person is different no general account can be given. Moreover, we know little or nothing about the evolution over time even in individuals that might allow prediction or advice.

I am not sure we know enough even to talk of a 'PEM state'. There is a worsening of symptoms. That is all we know. I worry about talk of 'the dangers'. We don't know what they are and I worry that people get the impression they may become paralysed or lose brain blood supply when we have no good reason to think anything like that happens. It all seems to hark back to the Royal Free supposedly neurological 'ME' disease that has nothing to do with ME/CFS as we now understand it.
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There is most defiantly a Pem state and we need everyone to understand this.

The lived experience should be at the forefront of our understanding and knowledge, that is how illness works, you have symptoms and you measure them. Just because we know certain symptoms belong to a disease, does not mean we know everything there is to know or that all illnesses have to follow what we know. We have to look at PEM because that defines this illness, much the same as the sweet smell of urine that indicated diabetics before testing was introduced. Cause and science is secondary, first log the symptoms.

I was talking to a supportive cancer nurse in a meeting about ME and PEM and I asked her if all the patients followed the same symptoms or trajectory and the answer is no. So why should PEM?

Just take sleep with those with ME. When out of PEM people have problems with either sleeping too much or not being able to fall asleep, but both have unrefreshing sleep. Either way, it is a problem with sleep. Does this change when going into PEM or stable in PEM and does it change when you are coming out of a PEM state and then go back to your normal ability/baseline? I think we should start looking at these three stages of PEM.

Mostly people with ME cannot deal with answering these questions and would not realise if they were struggling, but you can teach people to look for the PEM or reaching the end of their ability/envelope (again however you want to put it) it is a matter of knowing how to look for the signs. A face to face tutor for instance, can be taught how to look at the movement of the eyes for signs for zoning out or colouration around the eyes (most good tutors can tell you about this without being asked). They can look how the pupil is taking information in or how that process is changing. How the pupil is reacting to screen movement or sound. In hospitals this can also be taught, you may not get if perfect but you can most definitely see changes that allow you to guess what is needed. Carers do this on a day to day or hour to hour basis, so learning from them is paramount. They do this without knowing but if you listen for the keywords and you know what to listen for it is simple to pick up.

Then you look for impact on ability going forward. If their ability to move/accept sensory input declines, then you know the pupil/patient is going into PEM. This then can be tracked by symptoms, which can be increased or of a new nature. Then main issues, that normally indicate a further decline is, more sleep problems, more POTS, mast cell and gut issues. Then you watch and wait (but mostly hope) for the decrease, while being gentle with how they wake, eat and move.

The visible app, may help give us data and AI may help if the information was collected and I wonder why after so many years that more is not done about this. The PACE trial authors took apps away for good reason and that also includes Crawley and the FINET app.

I don't think it helps to track symptoms for the patient, but for us carers and researchers it is vital. Understanding that process especially when someone is very sick and declining, is life saving.
 
Facebook post:

ME Association Post AGM Statement

https://www.facebook.com/meassociat...YoXeVjqU8VdK8PaQYboHFjuRBTXys58l?locale=en_GB

is open for comments.


Also the same post on Twitter is open.

https://twitter.com/user/status/1866172381620003123


ME Association Post AGM Statement Thank you to all our members who joined the ME Association’s AGM on Monday 9th December 2024 at 2pm, we value your contribution. Read in full here: https://meassociation.org.uk/agms #pwME #MECFS #MyalgicEncephalomyelitis #LongCovid #Research #AGM2024

 
Dx Revision Watch said:
Insightful summary of the AGM:[/MEDIA]
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Steve Fifield said:
The trustees started defensively by spending the first SIXTY minutes of the meeting introducing themselves, giving us their CV qualifications and telling us how much they all appreciated each other as support. Not one interaction with any members in that time.
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I haven't read the rest of the summary but I was stopped in my tracks by this. For an ME charity to make sick PwME sit through an hour of this kind of non-business before getting to any kind of useful items or the opportunity to contribute is appalling. I would imagine a lot of the audience would have been spent by that time.
 
Peter Trewhitt said:
(Note If the Trustees want more involvement sending all members a notice of the meeting, an agenda and details of how to be involved in person, online or via proxy ought to be a minimum.)
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It's not just a "minimum".

It is a "must" under company/charity law that prior to an AGM, all members are sent certain information by a certain time and that is also baked into the MEA's Articles. They disregarded their own governing document but continue to assert that they had sent out adequate notice.
 
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Peter Trewhitt said:
I desperately hope, despite Monday’s AGM giving every sign to the contrary, that MEA starts listening to the serious concerns and criticisms currently being expressed and starts to look to change or it’s longer term future will very much be in doubt. First and foremost must be succession planning for the Board of Trustees.
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I've not seen a full transcript yet but from the reports of others, it appeared that Riley, at least, is very resistant to the concept of long-serving trustees stepping down instead of re-standing for election.

Neil Riley stated at one point that if recruiting a new Chairman, it would take years to train HIM.
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The board does not "recruit" a new chairman.

The board holds trustee elections or co-opts new board members and the board appoints one of its members to act as chairman. They also have a deputy chairman. These roles are not set in stone. The board can change the roles of chairman, company secretary (if they have a company secretary, a role which can also be assigned to a member of staff) around as they see fit.

Appointment and Removal of the Company Secretary
18. The members of the Board of directors may appoint the Company Secretary (if any). They decide his or her period of office and conditions of service. They may also remove the Company Secretary.​


Chairing of directors’ meetings
15.
15.1. The directors may appoint a director to chair their meetings.
15.2. The person so appointed for the time being is known as the chairman.
15.3. The directors may terminate the chairman’s appointment at any time.
15.4. If the chairman is not participating in a directors’ meeting within ten minutes of the time at which it was to start, the participating directors must appoint one of themselves to chair it.​


Riley seeks to give the impression that if he were to stand down, the board would need to advertise for a new chairman, per se. Whereas, any of the existing board could take over the role of chairman or acting chairman.
 
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Peter Trewhitt said:
However there is also the risk that they serve to prop up harmful aspects of the current system in such as their work with BACME members on producing a PROMS toolkit. This also I think manifests itself with a deliberate avoidance of conflict,
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Yes. This. Very well put @Peter Trewhitt
I had been trying to figure out exactly what the problem is, and it is this: propping up the status quo for fear of conflict, when confrontation is exactly what is needed.

The current paradigm and power balance have been in place for over 30 years and are pushing things backwards, this needs calling out so that change can happen

Peter Trewhitt said:
This relentless positivity also presents a model of how to be a ‘good patient’,
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I really struggle with this, to put it mildly. I have a family member who espouses the same philosophy; think positive and don't be a bother.

Mine and millions of people's lives have been devastated, the various governments are demonising the long term sick for holding the whole country back, and we are just supposed to say "oh, well better just get in with it and make the best of it then" I find this infuriating not to mention prescriptive, paternalistic and condescending.

No, I will not go quietly into that good night, dammit. I want a charity that will kick doors down and make things happen, not write to every clinic who refuses to change one at a time and ask them nicely if they might consider the new guidelines please and thank you. Not good enough and not fit for purpose.

And from the sound of the AGM, not planning to change, as the only problem they seem to see is those pesky patients making what they consider to be unreasonable demands of their charity.

ETA: we have tried asking politely and how far has it got us? A new NICE guideline over 70% of clinics ignore with impunity or have no money to implement even if pushed
 
JellyBabyKid said:
I had been trying to figure out exactly what the problem is, and it is this: propping up the status quo for fear of conflict, when confrontation is exactly what is needed.
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- and if not now, when? The time has never been so ripe to achieve some change, with awareness at such a (relative) high, and a current momentum of media attention that will not last forever.

But they're still going "Careful, don't frighten the horses" when the horses are already all running in different directions.
 
Kitty said:
He appears to have a lot of influence, though, if no one's willing to deal with him.

I suppose it's possible the whole organisation is unable to see that there's a problem, in which case there's a huge problem.
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Charles Shepherd is the longest serving director/trustee (he's been a trustee since the December 2003 elections). Turkeys don't vote for Christmas.
 
As Riley said “has he gone BSP” yes, yes he has. They have.
They are telling us how to behave.
They are telling us how to act.
They are upset at “keyboard warriors” attacking those who “try to help” us (I think Miranda got a lot of compassion actually, considering how offensive her cash grab book is). It’s evil patients sending threats again, isn’t it?
They are not listening.
They see us as the problem.
 
Extract: Action for M.E. Trustees’ report 2023 - 2024:

https://www.actionforme.org.uk/uploads/pdfs/Action for ME 2023-24 Annual Report.pdf

Length of service policy:

afme-trustee-tenure.png


So, can serve for 6 years if re-elected after the first three-year term, with the potential for an additional, exceptional [three-year] term. So a maximum potential of 9 years service.
 
MS Society's Articles of Association:

(Note: their chair may be appointed by a resolution of the members but that office is still subject to a maximum number of years' service. Neil Riley was elected to the board by the members but he was not appointed as chair by the members.)

https://www.mssociety.org.uk/sites/default/files/2023-02/MS Society Articles of Association ADOPTED Dec 2020 AMENDED Dec 2022.pdf

Once again:

13 Notice of general meetings

(...)

13.3 The notice shall specify the place, the day and the time of meeting, the general nature of the business to be transacted and a statement pursuant to the Act informing the Member of their rights regarding proxies.

"The Act"

"means the Companies Act 2006 including any statutory modification or re-enactment thereof for the time being in force;"


21.4 Elected Directors
(a) The members of the Charity’s Electorate may appoint up to eight Elected Directors for a term of three years, in accordance with any rules set down by the Board.

21.5 Appointed Directors
(a) The Appointed Directors shall be those individuals who have been appointed as Chair and Treasurer by a resolution of the Members and who shall hold office as Directors for such period as they hold the role of Chair or Treasurer, namely: (i) A term of five years in the case of the Chair; and (ii) A term of three years in the case of the Treasurer.

(22.3 In relation to the Appointed Directors:
(a) The Chair may not be re-appointed for a further term as an Appointed Director but may have their term of office extended by a period of one year in exceptional circumstances, following which they shall retire as an Appointed Director​


22 Retirement of Directors
22.1 An Elected Director retiring from office shall be eligible for re-appointment, subject to fulfilling such assessment criteria for re-appointment as may be set down in rules by the Board, for a further term of three years. At the end of the maximum consecutive period of six years served, an Elected Director may only be re-appointed for an additional period of one year in exceptional circumstances.​
 
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