United Kingdom: ME Association news

Some of Doctors with ME’s content has also been idiosyncratic.

MEA needs to become judicious, professional, evidence-based and responsive to members - and not to be the hobby horse for anyone else evangelising their pet theories.

 

A bit of a ramble, but it has taken me several days to draft this and I have run out of energy to edit.

I decided if I wanted a say in the future of the MEA I should after over twenty years rejoin. At least then I can, if I feel there is no other option, resign.

I joined on line on Friday and my membership pack arrived on Monday including the latest issue of ME Essential, however nothing about the AGM happening that day other than the uninformative paragraph in the magazine that seems to be the only notice. (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.)

I was impressed by the efficiency of how they dealt with my membership request and with the production quality of what was sent out. The magazine is well produced and had a lot of content. As mentioned before we must give credit for what they do well in terms of getting medical information out there. Obviously much of this is written by Charles Shepherd who undoubtedly puts a tremendous amount of effort in. I think there is a sub group of members who are served very well by the Association, particularly those who want to think about practical health issues such as managing sleep issues or considering what medications might help specific symptoms, but the entire tone felt relentlessly positive. I suspect the Trustees very much approve of such members as long as they are suitably grateful and uncomplaining.

I suspect increasingly there will be people who do not want everything to be so paper based and the option to get things electronically would make sense. From my experience of their Facebook page, though they do occasionally/regularly post things of a more dubious nature without any warning or comment, their social media serves the same membership subgroup well, with Charles putting in a lot of time commenting and responding with great patience with factual medical detail to a very wide range of user comments regardless of how informed the commentators might be.

Over the last decade or so, I have felt that the MEA sees itself as very much establishment insiders, deliberately trying to achieve change from within the system. It could even be that with such as the NICE guidelines this has achieved more than direct confrontation would have. 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, including suppression of dissenting voices through such as switching off comments in social media.

This relentless positivity also presents a model of how to be a ‘good patient’, illustrated by the Chairman’s piece in the latest magazine’s News and Research section on Miranda Hart’s book. It opens and ends with the well known line from Corinthians on ‘faith, hope and charity, but the greatest of these is charity’. Here are a couple of quotes from Neil Riley’s homily:

As much as the article that lead to the current furore and his non apology apology this illustrates how out of touch the Chairman has become. To dismiss carefully worded and well argued comments and letters as darts of keyboard warriors and to fail to understand the potential harm that such a high profile book can do to those that are not helped by magical thinking unproven alternative therapies is not a good look in what is one of Britain’s foremost ME charity.

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.

 

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.

 

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.

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.

 

Riley is behaving as though he were an indispensable figurehead for the organization; he is not. He is just a trustee who is currently appointed as chairman.

 

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.

 

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

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

 

- 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.

 

Peter Trewhitt reported:

"Neil Riley stated at one point that if recruiting a new Chairman, it would take years to train HIM."

.

 

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:



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.​

 

It is sometimes said on S4ME that the materials put out by MEA are good, or at least reliable. While more reliable than others I've been having a brief skim through, and there is still quite a bit of dubious material. A few random examples: a number of documents reference emotional stress as a a highly relevant factor, for example, in this document:

If you're wondering what the "three stages" are, they are apparently predisposing, precipitating, and perpetuating - which sounds familiar, those stages being also a critical component of the biopsychosocial model. In a document about immunisations the MEA say:

I'm sure most S4MEers will immediately recognise the first and last statements as being unevidenced, and the sentence about a "Th2 dominant" response references a concept in immunology that also has very little basis to it and is derived from an old and oversimplified model.

There are also references in a number of documents to "atypical" or "non-epileptic" seizures being part of severe ME/CFS (link, link, link, amongst others). I really do not think we should be conflating ME/CFS and FND in this way.

And there is this document about the potential causes of ME/CFS that is somewhat muddled.

I don't have the energy to take a more thorough look but someone might like to.

 

I'm currently in the process of liaising for corrections to statements published on the MEA's page about classification and coding, specifically around SNOMED CT and the coding of "Postviral fatigue syndrome".

 

Crumbs. I don't often read their documents but the quotes above are disturbing.

 

Complete cobblers, then. Nobody has the faintest idea, and shouldn't be pretending they do.

 

Ok at the end of this piece about stress it suggests taking up yoga, if you’re able. Do I win a prize for finding it?

That Stress article is the worst because it’s ostensibly about stress, it’s like a Trojan horse to slip in some unconfirmed “doctors agree” and “anecdotally” flannel.

I have to say there’s a letter they produced as a template to give to your GP (and my apologies if the author is among us) but the length of it, any GP would file it in the bin. I couldn’t be doing with reading it - and I need such a letter to get my GP to pay attention to me.