United Kingdom: ME Association news

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.

 

Reading this thread is giving me a lot more very serious concerns.

MEA have:

• social media staff, but Dr Shepherd is on SM 7 days a week and some comments appear to have been hidden
• set up a clinics project, which has not started by asking the local group In that area what they are are already doing and involved them upfront
• Funded the PROMS project for use in clinics - they are working with - and shut down criticism
• Are setting up a forum for patients: will this also have strict rules for participation? Did any patient ask for this? Is this the best use of the money they are sitting on?
• They have plastered Doctor's surgeries with MEA literature, not educational materials on ME or pointing people to local groups (who often cannot get their own details displayed)
• They held an unconstitutional AGM and ignored that it wasn't
• Ignored requests for proxys
• Made it very difficult to get hold of a link
• Shut down the chat and filibustered their own meeting so it ran beyond the capacity of the people attending
• Recorded it and refused to say who would be able to access it
• Shut down complaints in the AGM about the chair's off colour editorial
• Are opening up a 'working group' to discuss movement Vs bed rest (really?)
• Fobbing off serious motions both requesting change and suggesting a way forward for change and fundraising

At the same time:

• numbers of PwME have reached 1.2million
• patients are being sectioned and dying in hospital
• the NICE guidelines have only been implemented in under 30% of local clinics, while being merged with LC clinics, as the latter are being defunded
• Cochrane refuse to withdraw their out of date and dangerous review
• those who insist it is psychological continue to try and control the narrative.

Have I understood the whole picture here?

Is it just me wondering if the MEA has actually been convinced by the BPS idealogy, and are working very hard to control the narrative around ME, and the patients are a frustrating obstacle as we are refusing to conform - and even worse - refusing to be grateful for their beneficence?

This is our most heavily funded charity and the face of our illness?

No wonder patients are having to step in and set up their own organisations. With friends like this...

 

This also concerns me greatly.Riley and CS seem determined to ignore WHY the evidence-base that NICE produced.

 

It’s a red herring. Nobody has ever said that pwME must stay prone in bed, and never get up.

Because Neil had to re-issue his tone-deaf essay on why “getting up and dressed every day is best” and he’s now received a backlash that he doesn’t really understand, they’re saying OK well let’s look into this.

It doesn’t need looking into. The point is (and he wrote the op-Ed pre-emptying the backlash “has he gone bps?”) he came across as paternalistic, judgemental, privileged, unhelpful to the cause and tone-deaf. He can’t resolve that because he doesn’t think he’s in the wrong. He doesn’t understand how he is wrong. So instead they will set up a working group to examine whether advice which was never given vs Neil’s advice, to see who is right (it’s Neil).

They need a working group on pale stale male revision, why synecdoches are problematic, and privilege.

 

It feels like undermining what they’ve achieved for some reason and muddying the few waters that were understood as clear even if misinterpreted (as just meaning you shouldn’t exercise pwme , totally unhelpful from an order of magnitude issue fir the more severe in particular).

frankly it’s weird and has happened over the last year I think so I’m curious of influences or if it’s always been there and some balance has been tipped or what’s going on.

frankly it feels like funds raised under one identity and campaign of who they are and what they’ve been suggesting surely should have a bit of an issue being used to fund the opposite , particularly when you consider the lack of staffing changes or anything to justify that I think when publicised it surely is more than a change of mind or heart when you look back at what was the brand and culture put out during that time of fundraising etc.?

 

So that ‘random’ article has been used as a straw man , and now that straw man further used to crow bar relegislating either pace, workwell foundation or worse I can’t exclude it being somewhat about the most severe.

it did seem contrived as a piece of writing at the time. If this is what happens it really is going to be only describable as blatant / obvious as a sequence of actions to achieve an end like that … surely not?

 

I am not sure about that. Patients needing feeding have been told that they need to be fed flat so that they do not suffer reduction in brain perfusion. At least one patient has said they were advised they would only get better if they lay flat for weeks or months.

But the strange thing is that this advice almost certainly comes from people very close to MEA.

That raises the question as to what actually is 'the BPS ideology'. Again, I see paradoxes, since it has often been the bPS people like Knoop and White who have spun ungrounded stories about biological complexities to ME/CFS.

I suspect the reality is more that various MEA members have beliefs about ME/CFS that are just as ungrounded as the BPS views and do indeed want to control a narrative and give the impression they are providing wisdom, when in reality they understand no more than anyone else and maybe less. There may well be differences in view between MEA individuals but there is a perception of a need to appear to be of one voice and therefore justify a claim to authority.

The whole thing is typified by the claim that 'ME is a complex multi system disease' - which sounds knowledgeable but can mean whatever you want.

 

An odd case of people being dissuaded from getting out of bed. Versus the slew of nonsense thrown at pwME about pushing their limits, “pacing up” GET etc. Not to mention the guilt and shame that we “can’t”. And Neil felt so strongly that it needed him to declare we should all get up and dressed every day, we need to move!

Are we getting fed flat in some places but must be at 40%incline (renegotiated down to 5%incline) in others?

 

Can you imagine how comfortable people on that working group might perceive they can be about providing input that isn’t what certain people want to hear. And what would be needed to achieve it?

Eg perceived coercion is probably the first major issue that needs to be tackled in ME/CFS research - and current affairs would seem to note what a topical snd now understood issue that is for vulnerable groups put in situations that hsvent thought about how to safeguard and remove and reassure this (after all not being sure you are safe is still perceived ‘better to play it safe’ ) so it’s something you’d hope they will be very hit on leading the way in with complete independence and transparency etc. in that sort of thing if they do try it. What conditions would make people qualified to answer the questions safe (and feel safe) to give those answers and those reading them believe that’s the full story etc ? It’s an interesting conundrum to ponder..


And not a similar approach of only reading through the page and noting what they see is termed as ‘positive’ or ‘helpful’ or whatever the phrase was fir PROM in the response made in recent history there from them ?

 

I am pretty sure that it is not just an odd case. I have reason to think that the advice to stay lying flat has been given to large numbers of people and particularly people with severe disease in major trouble. Moreover, this sort of advice is passed on to others.

I am not justifying Riley's remarks. Far from it. But there is no doubt that a significant number of people with severe ME/CFS believe they will come to harm from not lying flat, in a context where we have no good reason to think that is true.

 

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.

 

Ah, this maybe the confusion. Neil was clear at the end of the article that he wasn’t addressing people who are severe.

So do we have mild and moderate people being told not to get up out of bed? In numbers which justify a working group to investigate pros and cons? Or is it the MEA creating busywork to deflect from Neil’s article?

 

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.

 

So basically he was bullshitting ad lib.

If the MEA want any credibility then they should know that setting up an open label working group with subjective outcome measures to magically decide what is good for people with ME/CFS is exactly the same poor quality project as PACE. Maybe the problem is that MEA have never really understood what was wrong with PACE and what we need to gather some reliable data.