Blog: Changing the narrative #1: exploring a new approach to strategic communications in the ME community, by Valerie Eliot Smith

I would add ME Research UK and #MEActionUK to that list, and possibly the Tymes Trust too, with MREUK and CureME leading the biomedical research and IiMER organising the international conferences.

MERUK and MEA already support the biobank, which may need to remain a separate entity, but MEA, MERUK and IiMER should definitely be merged. Given the history, I very much doubt that IiMER would be willing to join forces, but I can’t see why MEA and MERUK (and possibly the Tymes Trust, which I know much less about) should not join forces. A larger unified charity could also incorporate or affiliate with some of the regional charities too.

@Russell Fleming Is this something which has been discussed/considered?

ME charities are so stretched and underfunded, it seems madness to have so many small charities/organisations all competing with one another and/or duplicating each other’s efforts. We need fewer egos and more cooperation.

[Edited to delete duplicated text]

 

Agree on all the points and also agree about the wider point of a change of focus / a clearer focus.

It feels like if charities merged there’d be shared resources, finances and outreach to the extent that there’d actually be a hope of meaningful change.

I, unfortunately am part of several other long term illness communities, and there’s nothing like the fragmentation of voices you see in ME advocacy. Perhaps that’s par for the course if you have to do legwork in order to even get people to believe in your illness, but either way, it isn’t good.

 

A problem with one or two “super charities” is that they will often then tend to be run by professionals rather than people with ME as they are so big. Having ME charities run by CEOs has caused problems in the past e.g. Chris Clark (AfME CEO) (lots of problems including writing a formal letter of support for the PACE Trials); Mary-Jane Willows (AYME CEO) (lots of problems incl. supporting NICE guidelines); Val Hockey (ME Association CEO who said something to effect that we couldn’t be sure the condition was physical; fired/similar Dr Shepherd), etc.

 

I’ve also seen charities run by non-patients for other conditions make quite a lot of dubious decisions e.g. MS Society in the UK giving money to Moss-Morris and Chalder; Irish chronic pain society seeming to largely buy into BPS model; Arthritis Society in Ireland arrange talks on Fibromyalgia by the late Dr Michael Kelly (a disaster for patients but I’m sure insurance companies loved him); etc.

 

I've linked to this blog in the appropriate thread to do with the Mental Health Act but thought that this quote from the blog applied well to this thread, on the subject of organisation of charities

https://livedexperience0404.wordpre...2018-wessely-review-of-the-mental-health-act/

 

If we could have one big charity united in doing exactly what I thought they should, then that would be great. Unfortunately, it does seem like the larger charities are often less good.

I've also thought that the largest UK MH charities seem pretty bad.

 

Part 2

https://valerieeliotsmith.com/2019/...rring-factions-divide-rule-and-death-threats/

 

Up till now, I like the blog posts. Thank you @Valerie Eliot Smith! I think she has a good skill in observation, and I think she raises good points. The problem, as often, is putting ideas into action.

 

Anger, wrath and rage aren't necessarily negative; there's lot of energy in them. In history, some huge changes were due to an angry "mob" (others due to nature catastrophes), and the mob plays an important role in the circulation of elites and shouldn't be underestimated. For me, that the "ME community" is perceived as angry is maybe good because it's a sign that discrimination is happening. I know most people won't see that or agree.
What's the alternative? Being quiet, but determined? That won't lead anywhere. Being loud is important.

 

I'm not at all sure about this. Very few would condone such a video, if it were shown to exist. Why the secrecy? Why, if it was posted between 2009-2011 did it not feature in the "evidence" produced to and reported by the Sunday Times? What is the point of saying what should have been done in response when the details were not generally known? Why go in for the Pantomime graphics if such strong evidence is available?

 

I've been looking at this/thinking about it a bit more.

I don't think a 'super charity' is the answer, particularly not using a standard corporate model, with all the problems as outlined by posts above.

The way I see it is more an issue of branding.

If for example the MEA, IiME, and the Biobank 'renamed' as Invest in ME (Support),
Invest in ME (Research), and Invest in ME (Biobank) respectively as a linked group.

(I agree that it would be nice if Tymes trust could be in it too.)

(see Linking charities under the bit about mergers) :
https://www.gov.uk/guidance/how-to-merge-charities

They could largely retain their autonomy but potentially save on costs.

But the biggest benefit IMO would be them being under 'one banner' that we could hopefully unite behind.

I think the MEA has a bit of an image problem (possibly seen as a less dynamic, 'old fashioned' more establishment), plus it has history.

The irony is of course that the other major UK charity (AfME), for all its bells and whistles is much more corporate and establishment both in its structure and 'activities', and it's history usually glossed over.

If you look at the twos accounts on the charity commission website for example; staff costs (excluding NI and pensions) for MEA for 2017 were £121,981 compared to £383,124 for AfME
with the CEO receiving over £60,000 pa.
Also I think I am right in saying that the MEA members have voting rights, whereas AfMEs members do not.

From what I have read IiME is entirely run by volunteers but has no membership.

The Biobank I know little about (apart from what I have read here, and largely forgotten, apart from being associated with the MEA, and ,as they like to keep telling everyone, co-founded by AfME.

This is largely trying to 'work with what we have'; #MEActionUK are relatively new kids on the block so I'm not quite sure what role they might play, but certainly I am impressed with
#MEAction Scotland and what they have achieved so far.


(Sorry, I started writing this before the second part of VE Smiths blog so it appears rather off topic as she seems to have now moved on in her discussion.)

 

I think it's a mistake because it means we're still playing their game, when we should focus on advancing our own agenda. The purpose of the death threats narrative was to distract from the fact that CBT/GET are not working and that PACE is scientific fraud. We should ignore the death threats topic as much as possible.

Our own agenda, as I see it, is to point out that CBT/GET and similar psychosomatic approaches have no real scientific basis, and to ensure that good scientists are working on finding solutions. There is also a social justice angle which is sort of separate from the science angle, and that seems to be best solved by speaking out how horrible the neglect and injustice inflicted on patients is.

 

I do think it would be useful if we managed to work together with other patient groups, like EDS, POTS, fibromyalgia patients and so on. There is strength in numbers.

 

I'm not convinced by the argument around the video. No mention at all, that I recall, about how much proof there is, or isn't, of who actually created the video. Without proof of who made it then just accepting it as the work of a demented pwME, rather than the work of the BPS crowd who she claims has total control over the media, seems wrong to me, especially as much is made of her legal experience.

 

I was thinking recently of how the whole "death threats" agenda used by the SMC and associated people had failed them. Yes, it was horrible at the time but we have moved on from that. The whole "patients vs medics" story they tried to perpetrate died in the water after the letters from Ron Davis and co.

Before the hate attacks from the SMC and psych lobby through the media we patients were very alone. We aren't any longer.

 

Crawleys presentation where she showed the mock up letter (from the Times), and commented on the sender threatening to cut her balls off was not just an exaggeration but a complete lie/fabrication. Not just a comment made in passing but addressing a room full of people which she knew would be viewed by many more. Yet she got away with it.

 

or a patient with direct experience of being harmed by the BPS lobby and them not wanting this to be in the public domain as a court case?

 

Maybe what she means is how the ME community is perceived. I agree that a typical political behavior is ignoring and keeping secret - until it can't anymore. Then a public statement is needed to reconcile.

Is the ME community at the point that it has to make a public statement in order to improve its perception, because silence will only worsen it? Will it be heard? Will it achieve what is aimed at? Or will it be an owngoal?