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

Sly Saint said:
I would like to see Invest in ME Research, CureME (Biobank team) and the ME Association join forces.

The MEA to be for patient support,advocacy and fundraising etc, Invest in ME and CureME concentrating on the (biomedical) science and getting more scientists (from across the world) collaborating, and joining the field.
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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]
 
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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.
 
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Dolphin said:
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), etc.
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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.
 
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Dolphin said:
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.
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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
Although charitable organisations like MIND and Rethink Mental Health do a lot of good work, I do not consider that they represent service users. The senior executives of these charities are generally not service users and their experience of mental ill-health is most often second hand. During the last few decades, these national organisations have become more professional in the way that they are organised and managed and nowadays they are led by executives who have made a career in the charitable sector. More recently, some of these organisations have started to bid for government contracts to provide care services and they are no longer independent of government influences.
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https://livedexperience0404.wordpre...2018-wessely-review-of-the-mental-health-act/
 
Part 2
This is the second part of my series of posts on changing the narrative around the illness myalgic encephalomyelitis (ME). The first part of this series can be found at Changing the narrative #1: exploring a new approach to strategic communications in the ME community. The third part will follow soon.

This is a very long post (3900 words, including the Re-cap) but it is one that is better kept as a single piece rather than separated into two shorter posts. As usual, I have split it into several different sections after the Re-cap; it then falls naturally into a Section A and a Section B which are clearly marked. I hope this will make it easier to read for those who, like me, experience cognitive challenges as a result of ME or any other condition.

Despite the international reach of the internet, each geopolitical region still faces its own unique set of challenges when it comes to healthcare and related matters. This series of posts focuses on the situation in the UK. However, some of the links use references from other countries because the general principles remain the same, whatever the specific local considerations may be.

The Brexit frenzy continues…….

It’s hard to explain to those outside the UK just how profoundly the ongoing Brexit chaos continues to affect every aspect of public and private life here. I think it’s fair to say that it’s unrealistic to expect much sense from any of our institutions or government departments for some time to come.
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https://valerieeliotsmith.com/2019/...rring-factions-divide-rule-and-death-threats/
 
However, the abiding impression is of an angry mob with too many activists indulging in excessively hostile campaigns towards the very people who are – apparently – trying to help them.
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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?
 
At the heart of the argument, from a single reading of this, it seems Valerie Eliot Smith is saying 2 things.

1. The ME community has not even got off the starting blocks in the media against the BPS narrative. And the Press Complaints people have experienced a lot of flak from people complaining about media coverage to the extent that they regard us in the same vein as extremist animal rights people.

2. The ME community needs to first make a public statement distancing ourselves from the harassment of BPS researchers, and was at fault for not doing so when they happened. Specifically a single instance of a nasty YouTube video making credible threats against Simon Wessely that was briefly posted sometime between 2009 and 2011 and quickly taken down. And other evidence she says she has received in confidence.
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My problem with this is that I see no reason why the 'ME community' should have to apologise or take any responsibility for something criminal done by one or a few shadowy figures who may or may not have been part of the ME community and who made threats most of us were completely unaware of. Nor do I see why it is up to the law abiding majority to have to pro-actively 'distance ourselves' from a few unknown criminals. The fact that the media or anyone chooses to associate the rest of us with criminals is ridiculous.

I think the responsibility for changing the narrative on harassment lies with the BPS people and the SMC who have, as a deliberate policy to discredit any criticism of their 'science' made the conscious decision to use the actions of a few criminals to distract from genuine criticism of science. That was their choice. Sharpe and Crawley do it all the time. It was done recently when the news of the Cochrane review being challenged came up. Harassment had no relevance to the Cochrane case, but the media egged on by a chum of Wessely, and presumably on the advice of the SMC chose to tell it that way.

I can't see how a public statement from the ME organisations now distancing the ME community from a few nasty criminal acts that have nothing to do with us will help. It's asking us as innocent sufferers to take the blame for something we had nothing to do with and that has gone on being used by the BPS crew as a smokescreen to perpetuate false information about us as people and our illness and to protect their careers.
 
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.)
 
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Mmm. I think this is going to just lead to speculation about what was in the video, what brought that person to making such a video and the likelihood of them actually carrying out the threats they are said to have made.

I think the vast majority of us would say making threats isn’t appropriate and wouldn’t support that.

Maybe one way way forward would be some form of truth and reconciliation process whereby anyone with ME or involved in ME research who has evidence they’ve been subjected to threats or harm can come forward and give evidence to a commission. Patients, or the families of those who are now dead can talk about how they have been neglected and abused and researchers/medics can talk about nasty videos and letters.
 
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Trish said:
I can't see how a public statement from the ME organisations now distancing the ME community from a few nasty criminal acts that have nothing to do with us will help. It's asking us as innocent sufferers to take the blame for something we had nothing to do with and that has gone on being used by the BPS crew as a smokescreen to perpetuate false information about us as people and our illness and to protect their careers.
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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'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.
 
Andy said:
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
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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.
 
Andy said:
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.
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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?
 
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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?
 
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