United Kingdom: ME Association governance issues

I have no words for the Neil Riley article. What on Earth? Is there no one at MEA who thought to challenge this? Do they not have any guidelines for contributors? Literally insulting the membership is ok? There should be an expectation that you can share your own experiences but not make unfounded generalisations about others. The implication that the minute we all became ill we just took to our beds and stayed there... couldn't be further from the truth. Has he ever met another ME patient?

 

His 2019 offering was bad enough...

 

How many carers have read Neil Riley's articles, and possibly concluded that an official of the MEA must know better than the person with ME they care for? How many new patients have read those articles and thought that Neil must know best?

 

Occasionally, I have to gently explain to well-meaning friends who only see me at my brief, fast-burning best why I wouldn't feel better if I 'just went for a short bike ride'. I'm gentle about it because I know they're trying to help me because they care, but of course they only know about ME/CFS from the media and don't realise that their advice is dangerously wrong.

I also understand that they don't mean to be patronising, even though they are being. They're assuming that in all the decades of my illness, it never occurred to me that inactivity would decondition me and that I should try to do more if I could. They say this stuff because society has taught them to think that PwME don't do this, because obviously we'd be better if we did.

I never expected to see this 'Silly patients! If you only just tried...' stuff in an MEA editorial.

 

We know bedrest on the scale of weeks to months has consequences for our bodies, but, at some point, in ME/CFS, bedrest is likely a net beneficial, compared with trying to push through each day. There's no objective testing to show us at what stage this occurs, and it's likely different in each patient, and changes temporaly. We are all just guessing, using our intuition, and it's deeply frustrating never really knowing whether we are doing the best thing for our bodies.

In this respect, the piece is crass, insensitive, and doesn't acknowledge these unknowns. Neil's caveat about people 'who are extremely ill' is not enough, because it's often a guessing game for each individual patient as to which group they belong in.

 

Indeed - the only people ‘in bed all day’ are the very people he hides the claim that he excludes from this assertion at the end of his penultimate para - so it’s actually inadvertently targeted at them... certainly all the way until that line maybe gets eventually read. Which is how misinformation works, these messages get in first then the 'debunk' is too late.

is there a phrase mildsplaining just like recoverysplaining - but that needs a better term because it infers people had ‘the same thing’ except you wouldn’t get someone treated for pre-cancer making opinions that happily all the way through seem to suggest if only those stage four behaved as I did etc

then there is the whole new level privilege of circumstances particularly plays into making someone more ill or less ill in me/cfs due to stigma like this and misguided ‘support’ along with those who have to do manual jobs or more physical commutes , live in bad accommodation with noise issues and can’t take sick leave when they first get ill etc being ‘make or break’ in outcomes

IF you got these basics then all of this feels very old fashioned as a ‘chat’

and yes it’s so obviously straw man that it’s worrying from a representative even if it was inspired by recent Twitter X from certain non-ME experts (so why choose no references?) - it sounds like someone who hasn’t heard or doesn’t know about those constituents they represent but yet is speaking to who they are based on presumption.

The last thing any person needs ‘on their behalf’ to the extent one could call it using your own service users good names and reputation. When you hold the responsibility this position comes with you don’t have the freedom to not reference where it came from otherwise it’s directly implicit that it IS them?

 

But what is the sign-off sheet for this particular part of the magazine given it is called the 'from the chairman' part?

If it is administrators but they get over-ruled if they flag things, and there isn't someone above the chairman in this sign-off then there wouldn't actually any editorial control or proper check on it - editorial control would in that case lie with the person who also wrote it, because the person with the control/sign-off is the same person who was the author?

 

Yep.

"OK boomer".

 

Absolutely.

I was sure I'd seen similar along these lines from Riley before. I don't know if it is the 2019 posted here or was yet another one but remember being flabbergasted then.

 

If one takes on a position of the greatest responsibility in a major ME organisation then the desire to discuss personal opinions must surely be temporarily subordinated to the interests of the broader ME patient community. Words must be weighed more carefully; the chairman of the MEA is not a random patient chatting away on social media. It can be expected that this article will be quoted, perhaps even cited, by those ill-disposed to us as some kind of evidence that pwME are broadly fearful of activity.

Furthermore, many patients - especially newer patients (and there are a lot of newer patients post-COVID) may treat the words of the chairman of the MEA as authoritative. Needless to say this is not advice that would have been at all helpful to me when I first developed ME; in fact, I would probably have thought that we were not discussing the same condition. (Sometimes I wonder how things might have been different for me if I had initially spent some time resting deeply & convalescing). I worry what a new patient might think, reading this.

It would also be helpful if those leading major patient organisations understood commonly used terms, such as "biopsychosocial" (as opposed to "bio-social-psychic", whatever that is).

Here's hoping that the motion to limit the duration of trusteeships at the MEA succeeds.

 

Indeed. As an outsider, it looks as if it needs a review of its entire operation.

Ideally, it would consult with members but also invite input from the wider ME/CFS community. Some of them might even join if they felt they could support the strategy and had more confidence in the trustees.

I doubt it'll happen, though. The MEA's looked awfully like a clique for most of the time I've been aware of it.

 

This is making me glad to be a member of AfME and not MEA.

 

I think this is an older, from a few years ago?

But if I saw this at any time and was a member of an association that think it's a good idea to publish something like this, I would terminate it, ask for a refund and never look back. Incredibly condescending and foolish to even put this together. What a disaster those charities can be. We basically don't have any in Canada, and looking at how things are, the same, it's easy to see why having them exist makes no difference.

 

There are two streams of conversation to be had here really. The second (next post) interacts because the 'what happens next' can be what stops 'sort the first'.

The first seems a no-brainer (apart from the next catch) but something that would be now worrying if it was postponed etc. (because of issues like PROMS) And includes fixing some of the more unusual things that have been flagged that matter - I didn't realise that the checks/balances purpose of governance was being undermined by the trustees being the ones who actually write each of the strategies and plans, whilst also being the ones who advise and scrutinise them if that is actually correct ?

And its impact on job-size if so vs chances of recruiting good candidates (if the norm is a committment half the size as trustee for other charities). Plus of course the added, but ever more relevant, issue of this being an energy-limiting condition where experience with different severities also matters.

If you think of the direct relationship between that increased severity ('being qualified' by having that experience if you think in job terms) and reduced envelope or 'time to offer' if a carer (but not necessarily ability) then I suspect we have issues with ways of working almost implicitly making the most qualified the least able to access the role, for reasons that not only are not needed/priorities but aren't 'norms' necessarily.

Perhaps we should expect a modern ME charity would find a better way to balance having that disease-specific experience/qualification and professional skillset/understanding than expecting it all to be in one person.


The mention of the editorial control/ sign-off process is interesting as an example. Simplifying it to how things can work eg for a magazine, then each page will have a list/hierarchy of stakeholders (hierarchy as different people might suggest contradicting edits and there needs to be final says on each aspect), the whole magazine might have a specific tone and sign-off for that, and indeed their might also be the same by 'section' (what is and isn't included in that).

What qualified pwme/carers who might have experience in different severities/backgrounds would be able to flag vs for example someone who was hired for their expertise in fundraising or accounting or PR will be different. But there should also be overall 'messaging' or principles that those who are responsible for marketing, brand, PR would be ever-conscious of.

Who gets to decide these is part of strategy too. Which is currently scrutinised (and written?) by trustees. So no, just ticking the box saying 'patient insight' will cover it, isn't the same. It probably needs something a bit more substantial to get the right type of input properly built in. Sadly I don't have the answers off the top of my head, as it looks like it needs quite a bit of thinking through!

 

The second is two points that inter-relate, and becomes more complex with more detail of the history.

Point one is Charles Shepherd and I agree he is very important to the organisation, and can see the difference between being a hired medical advisor vs keeping some say and control is important, particularly as I can imagine how easily things can fall into the wrong hands given even the best policies focused on evening things up for the energy-limited can't disappear the huge advantage it is to have full energy, health and none of the committments that come with being on the wrong side of the illness.

The history described above from 2003 and what happened with a CEO, Val Hockey etc. is useful to learn from. I suspect there are many other stories its worth knowing to fully understand what could happen and how different things work and why different points are there.


Point two is what @Sean wrote about really eloquently and succinctly regarding old hands and knowing where the bodies are buried but also believing all that has gone on, so we don't repeat the same traps.

How can security be provided for both pwme and Charles to avoid unintended consequences, and in fact improve the pool/safeguards ?

I can see that once you've just a few into a board who have an agenda then that influence can be used to snowball it if only via stubbornness or attrition/paralysis by disagreement and so on.

 

I agree with all the comments, but this is absolutely gold.
There’s a pompous privilege in this endeavour, of the sort that has been phased out recently.

 

This is the older (summer 2019) article:

https://www.s4me.info/threads/me-association-magazine-summer-2019.10788/#post-191812

 

There are many stories from the period between 2003 and 2006. Let's say it was "interesting" times.

 

The Twitter/X poster Phoebe says it was published last month.