United Kingdom: ME Association news

So their reaction to the widespread criticism was, we need to use up pwME’s donations to improve our image and hire people for “communications”?

Instead of oh shoot we’re not really representing the people we claim we are, we need a shakeup?

 

Yes the launched”we want to become more accessible” at an AGM that didn’t give the required notice, was difficult for members to access, had the chat turned off and various trustees forgetting to “mute”, lasting 2.5hrs. Not exactly accessible.

 

Current Social Media

https://meassociation.org.uk/mea-team/

Emma Jeffries Communications and Social Media Lead

• In Emma’s early career, she was a qualified staff nurse, however, this career ended due to chronic widespread pain and debilitating fatigue, which was diagnosed as Fibromyalgia. After which, she was later diagnosed with ME/CFS.
• She is the founder of Andover Fibromyalgia & ME Community Group (AFMCG) and has always been active on her AFMCG social media and supported people with ME/CFS and Fibromyalgia in many online health communities.
• Emma joined the ME Association in March 2021 as Social Media Specialist and has taken on the role of overseeing all communications and social media content.

plus Communications Officers:

Rachel (website and social media) Bio on the Meet the Team page.
Kelly (social media and the MEA website) Bio on the Meet the Team page.

Not sure from today's AGM report whether they are intending to recruit an additional two to the communications team or are referring to Rachel and Kelly above, who both joined the team in 2024.

Currently three working on social media but evidently no-one able to be deputed to respond to comments and queries on Twitter and Charles Shepherd responding personally to many comments on Facebook.

 

Window dressing.

 

I don't understand the approach. If something turns into a major discussion point, social media managers could post a boilerplate reply thanking contributors (assuming they weren't abusive) and saying that responses are being collated for discussion—followed later by an official post letting them know what's going to happen and when. The delay can be frustrating when people are hacked off, but at least they don't feel they're being barricaded out, silenced, or gaslit.

 

I'm not sure I even see a lot of value of a charity endlessly discussing stuff on social media. It's not where I want them putting their effort, but perhaps I'm old-fashioned (I don't engage with social media).

 

Is pre-moderated meaning the same format as the page run by Hilda Bastisn?

 

It is, in theory at least, where MEA engages with some of its client base. Disability charities should offer multiple points of access, as it means as many needs are catered for as possible. Social media's especially useful for people who wouldn't have the capacity to draft an email laying out all the background to the points they want to make; they can engage via X or Facebook because the context is already there. They only need to draft two or three lines to add their voice.

Except that social media seems to have become the place MEA refuses to engage with some of its client base. To the extent (it seems) of making posts that allowed comments, then deleting those that weren't abusive or even off topic just because they didn't like them. That's not offering access, it's controlling the narrative while pretending not to.

 

I bailed at the 2 hour mark, which was already way past my limit. An awful lot of effort was made by very ill people to get maybe a millimeter of movement from them.

It was very inaccessible with short notice, no breaks, no chat and far too long wasted on personal stories. I also got weird whiteboard invite emails no idea what they were for.

At time of leaving no discussion had been made on the short notice or making it hard to get the joining link. @dxrevisionwatch.

There was discussion about setting up a patient panel which could become useful if it evolved into a PPI steering type group but they scoped it as solely to discuss differences in lived experience of movement helping or hindering etc. And they seemed to expect patients to be leading it.

I honestly think it was the worst example of stakeholder management I've ever seen.

They quite clearly had battened down the hatches and were in deflection not listening mode.

I agree with the person who said sensed a disconnect, they do seem hopelessly out of touch with their own base with a markedly ivory towered paternalistic attitude.

I hope someone raised succession planning more generally to them after I left . Regardless of the governance motion they need to be thinking about it or the charity could become very vulnerable. It's clearly completely dependent on the chair and Dr Shepherd.

 

Meanwhile A4ME is stopping engagement on social media as it’s a time suck for their small team. Wasn’t there a pointed remark about people (I paraphrase) going on and on about the same stuff, now they’ve decided not to reply.

Honestly, who tries to please everyone on socials? That’s madness. Just put out your info, and do standard replies in comments. At worst you don’t even need to reply at all.

 

Just to pull this line out that I read over a while ago and now am thinking is a bit weird.

A patient panel solely to 'discuss the lived experience of movement helping or hindering etc'. Could they not be getting up to speed with what actually are the most pressing issues from different groups first to find out what is most urgent?

Where is this specific 'thing' coming from (?) - it does indeed seem a strange place to begin given it feels like the classic trope-line they should be clamping down on and putting in a trope list of 'I'd love to be lying in bed all day too'. It feels very old-fashioned as I thought the obvious answer is 'it depends' on what someone individually has severity wise and other conditions. And whether they are able to and what it is 'spent on' is dictated by circumstance and priority. This slightly feels like an informal re-run of the pace trial if done wrong.

But more to the point why is this the biggest priority? Of all the things.

with the ongoing issues there seem to be currently of making things accessible even to those who are severe, nevermind very severe so participation being limited. Particularly given if it relates to that article which waited until the penultimate para to add in a caveat of: 'of course there will be some who are too ill'. Rather than realising 'do no harm' was the most important thing of any article so such 'this doesn't apply' should have been the first para?


How someone uses their entire envelope for the day, if they have it, isn't to be dictated by people in entirely different circumstances with different responsibilities and privileges as safety nets - so you need circumstances that reflect what people will endure today, including those with no support. The size of their envelope is on the other hand medically determined. And it had been since the Nice guideline and the research showing 'pushing through' 'therapies' don't work agree that PEM exists I thought (?) so that increases as you get better, not the other way around.

The information from MEA used to be informed by medical knowledge and make a point of noting how individual things are. The Nice guideline covers this area. Is this to inform those within the MEA about the different circumstances others with each severity might live under (in which case how are they making sure they are making it possible for those more severe also with difficult circunstamces are being got in touch with and making it possible for them to contribute without it being wasted energy?) in order to enlighten what it is like on the ground for those with these situations different to them?

Why are we heading specifically again into this territory that would take incredible skill and nuance for it not to backfire in a way that will harm the most vulnerable? Particularly given what is currently happening with trying to get services etc suitable for those who are severe. We all know one person saying they like to or do x can be used by others to suggest why doesn't another person do it, even if it turns out person x ends up the worse for it 2yrs down the line. That 'longest timeframe' was underlined by Nice for very good reason. Are they going to be at least ensuring wht would need to be incredibly careful questions and input in making sure someone is 'qualified' (ie has completed that timeframe to be able to say the outcome of whatever they did/tried) to answer it etc.


As a side note, and another thread one day.
I agree they need proper experienced (ie with different levels and a large amount of years so they've gone through the 'hoping' phase and seen 2yrs on whether trying x, y, z actually did work) and knowledgeable patients, not some grab a few patients to tick a box, and that it should be informing everything they do in order to make sure we don't have more 'splaining'. And to direct the priorities as the biggest areas of crisis/horizon scan and be in the loop as to what seemingly small 'nudges' end up doing to certain groups (eg the straw breaking camels back). I'm a bit worried if they would be used for something else.

I also increasingly actually think it needs to be over-weighted with those more severe for various reasons including how hard it is for them to speak vs those less ill (and be heard) but also to give room for them just doing part of things and of course because there are probably more issues those will have encountered due to the nature of the condition meaning more support is needed (whether provided or not). It's 25% of all patients, it's hugely hard for them to communicate but harder if they are outnumbered by those with more energy, and any of those patients could have been or end up as part of that 25% so that level and how it is understood and treated affects everyone. Because it is one illness.

And it’s hard to imagine or even believe the level of debility + how much hands are tied behind your back and you are undermined by others due to misinformation and minimising until you’ve been there long enough to know you might be stuck there, yet if 4 severe people agree and back each other up it is more heard than if it's one poor soul people assume it's just them and their 'individual situation' not an indicator eg of a service issue or a common symptom pattern etc - I know some people wit less severe ME are as bad at not getting the exponential impact and limitations as some who don’t have it at all. So less than 25% of all input is inappropriate.

I'm not sure what I'm thinking this would require and be is the same thing

 

It’s a bolt-on to enable the same stale people to carry on. What you need is a modern, transparent, non-paternalistic board of trustees and CEO. There’s a saying in HR - Culture comes from the top. You could employ the best staff in the world, but all it takes is a few Neil Riley’s/“my wife has ME and she thought it was ok” leaders, the house of cards collapses.

It’s like someone tackling racism in the Met dropping a “some of my best friends are black” comment.

 

That's the problem - people can comment on social media in seconds, so hundreds and thousands do it. So the result is an infinite fire-hose of comment which no charity in its right mind should be attempting to answer. I recognise the tension with the disability access issue but I don't think we should all expect a national charity to respond to every single one of us. I want our charities spending our donations on research and support, not answering every social media comment.

 

I am not familiar with Hilda Bastian's platform, but when the MEA's 2002-2003 forum changed to pre-moderated, instead of posts being published immediately, all posts were vetted by the mods before being published or rejected.

It makes a great deal of work for the moderators, messes up the continuity of threads and the benchmark for what is considered an acceptable post and what is not may differ depending on who is moderating that day.

I note from the MEA's "Meet the Team" page that all three of the current communications and social media lead and officers have personal experience of ME/CFS and may not be putting in many hours each.

 

That's not what I said, though.

I was suggesting social media managers usually respond by making a post telling the commenters that they were listening; then, once the process has been discussed and decided, telling them what's going to happen next. There's no earthly need to respond to them all individually.

Handled professionally it's a genuinely useful process, especially after a misstep has been made. It's bruising for everyone while it's happening, but it enables an organisation to hear people's views, learn from them, and do better in future. Handled professionally, a cock-up can be turned into something positive—look at the respect gained by Sonya Chowdhury and AfME when they listened to feedback, admitted they'd made a mistake, and apologised for it.

 

Thanks, Kitty, I'm sorry I misunderstood you! What you're saying would be ideal, I agree.

 

No worries, I can write a lot of verbiage and still be as clear as mud!

I sort of understand why the MEA made this mistake, because I've seen similar things happen. It should be obvious that a planned action is seriously misjudged, but nobody can see it because they're stuck in their own bubble.

The resulting bin fire isn't necessarily fatal if it's seen to be managed well. In this case, that would have been understanding that Neil Riley couldn't continue as chair, and that MEA wasn't engaging properly with its user group.

I've long believed groupthink should be on every organisation's risk register. That would at least mean it gets discussed and evaluated at regular intervals. Can't say I've ever convinced anyone to do it!—but it's behind so many failures and so much reputational damage.

 

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 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.