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

Crawley said that the cover illustrating the Times 'harassment' article was an e-mail she had been sent (in her TEDx talk, and others too - an earlier talk implied that she had literally been sent the letter with threats in cut out magazine letters). This always seemed unlikely as it read like a mix of different things, and in the article the 'balls' threat was reported to have been something that Wessely said had been said to him over the phone.

@JohnTheJack posted this info from the graphic designer who created the image:

 

I guess as someone else I think said her point is we have a terrible reputation and that has to be addressed by addressing their false impressions before they will engage with us or represent us fairly.

I personally think we should be burying the harassment stuff and giving it short shrift in interviews, focusing instead on utterly reasonable, positive stuff we have wanted /want that isn’t happening. One point Is whilst the press cover a bit of CFS science and there isn’t much solid yet to cover, aside from anecdotal stories we haven’t at all since Sonia poulton had the social justice aspect covered And I don’t think the last missingmillions day got any significant coverage so I think this is where we should be putting attention, changing the narrative , causing a stir and making people look into why is there a stir instead of dismissing us for making noise as being troublesome.

 

edit: Here's an example of the cover: https://twitter.com/user/status/923256917379682304


edit: This post was meant to be an edit to my above post, but I messed up and replied instead. Oh well.

 

Regarding mergers of charities, etc.: I remember when Action fo ME had a big workforce with a turnover of around £1 million in the early 2000s (a lot more in today’s terms) but closed its research fund saying it was going to concentrate instead on lobbying for research. This was before Invest in ME and MERGE/ME Research UK had just started as a tiny charity in Scotland. Charities can easily not financially support research including big ones.

 

I wouldn't say it's damaging. I think I disagree with the emphasis of the blog, and I don't think that the proposed solution is likely to be useful (though I don't have a better solution, other than plugging away, hoping that continually pointing out problems with gradually lead to improvement, reminding patients that it's worth trying to avoid expressions of anger even if they're justified), but I think that there's value in the blog for starting discussions. I'd never heard of this Wessely video before, and that's a bit interesting (although it would have been more useful if there was any info about whoever uploaded it and if they had attached any substantial concerns to their threats/abuse).

I also agree with Chesire about the problems with talk of an 'ME community'. We're just ill people who often have a shared experience of being treated unusually badly, but with very different ideas about how to respond to that and how we should be treated.

 

Sorry, I would. I have no doubt that it was intended that I take away different points from each part of the blog but, for me, I have taken on board that it's men's fault that we are in this position (from part 1) and that we all should have, well, I'm not really clear what we all should have done to prevent and/or condemn those violence-threatening activists that are definitely out there, but it's certainly all our fault (part 2). As an effort to bring us all together and forge a single way forward, well, it stinks.

 

Well here's my take on VES's second blog.

It basicially consists of:

1. A friend told me that the PCC (which no longer exists) told him that ME patients were a nightmare.

That it? As a lawyer (who can't seem to stop herself from waving her credentials in our face at every opportunity), surely she's familiar with the hearsay rule? This is hardly overwhelming evidence in support of whatever it is she's going on about.

2. I have decided upon a taxonomy in which I describe those with ME and those with CFS as two "warring factions".

Well that's really helpful, let's reignite those tiresome disputes about who are the "real" patients. Pointlessly divisive? Not much.

That would certainly be an option worth considering. No great loss in my opinion.


3. We should do more to battle on the media front.

Great, let's emphasise fighting the BPS brigade on their home territory, where we will always be completely outplayed. It won't be distraction from the science, our strongest card, at all.

And while we're at it, let's make this "science vs. PR" a gender issue. From her first blog:

So so far she's describing and contrasting the following categories:

ME patient vs CFS patient

Scientist vs. PR campaigner

Male advocates vs. female advocates


If she's so worried about the BPS brigade using "divide and rule", why's she doing their job so well for them? From a PR standpoint, this blog is a disaster, publicly highlighting accusations against ME sufferers which many will not have been aware of, and seeing how many ways she can find to divide the community. And we are supposed to trust her competence in the PR department and support whatever it is she's going to get round to suggesting?

4. Militant threats

Oh well, if your research leads you to that belief that's good enough for me. No need to provide evidence, after all no-one else has. I'll just take your word for it and follow your judgement. ME sufferers find evidence over-rated anyway. No really, there's no need.

Oh, evidence suddenly matters again now, does it?

And there's a story about some nutter putting a video on youtube I'm supposed to give a shit about? Evidence suddenly becomes vague again, and I quote from her account:

My information is limited
The exact date is unclear
It would have been somewhere between ...
It appears that ...
The complaint could have been made by ...
The assumption is that ...
I can't say whether or not ...
... in strictest confidence.
For various reasons, I’m not going to attempt to describe it
I don’t know the outcome of that advice ...
nor whether the matter was referred to the CPS ...
As far as I’m aware ...
I must stress that this scenario is purely hypothetical on my part.
I don’t know whether or not the matter was ever referred to the police and the CPS.

Speculative and gossipy much? The women in the queue at my village butcher's on Saturday morning could do better than that, maybe I should ask them to spearhead a female-driven PR campaign for ME sufferers. I'd have a lot more confidence in them achieving anything useful than I do in VES on the strength of her first two blogs.

The rest of the blog is just preachy nonsense. Can't be arsed with any more of this one-woman ego trip.

 

It’s taken me so long to write this comment that most of it has probably been said already but here is my take for what it’s worth:

Sadly politicians and other public figures are subjected to abuse and threats on social media all the time. That is deeply regrettable but it has become a fact of life. Given the abuses and injustices to which we have been subjected, if among the estimated 15-30 million people with ME there were not some who behaved inappropriately it would be extraordinary.

Having said that, we have no idea who made the alleged video which VES refers to, no idea what their motive was, and no idea what it says. If it exists, it might or might not have been made by someone with ME. It might have been made by someone with a psychiatric illness. Or it might have been made by someone who had a hatred of people with ME who wanted to cause trouble for us by posting a video pretending to be a member of the ME community. It might be all sorts of things but without having seen it, and without the evidence having been examined in a court of law we cannot know. As a lawyer, I’m surprised that VES does not appear to appreciate the importance of due process* in this of all cases.

Whatever claims are made by Sir Simon and his BPS colleagues, I certainly will not assume them to be true without examining the evidence. BPS claims about PACE/CBT/GET have been shown to be false – and possibly deliberately misrepresented – and the their claims about the threat posed by patients were found to be “grossly exaggerated” by a first tier FOI tribunal (newcomers, see: https://www.meaction.net/2016/08/16/tribunal-orders-release-of-pace-data/). They have also deliberately and repeatedly conflated legitimate scientific criticism and FOI requests for data with harassment and criminal behaviour, as part of an organised smear campaign again patients. They are not reliable witnesses.

Of course, although I’m not aware of any evidence of any ME patient ever having been charged let alone convicted of harassment or issuing death threats, if any reliable evidence was ever provided that any such behaviour had ever been directed towards Simon Wessely or any of his BPS colleagues, we would all condemn it unequivocally. But such allegations are completely irrelevant to – and a deliberate attempt to distract from – legitimate scientific criticism of deeply flawed BPS research.

Moreover, the ME community would be in no way responsible for the actions of anyone who was found to have acted criminally, and it is hugely irresponsible for SW or anyone else to suggest or imply otherwise.

By contrast, I would suggest that SW and his colleagues are responsible for much of the abuse to which people with ME are routinely subjected, from medical professionals in hospitals and clinics to members of the general public on social media and beyond.

It is also worth remembering that psychiatrists are subjected to abuse, threats and violence on a regular basis – it is accepted as an inevitable part of the job. But it is also part of the job of a psychiatrist to protect their patients from being harmed, not to subject them to greater risk of harm by smearing them in the media and to their professional colleagues.

Regardless of what threats Simon Wessely may or may not have received, such actions should never be allowed to deflect attention from the fact he and his BPS colleagues have failed in their duty of care to patients. That is the story which needs to be told – not the alleged failure of patients and ME organisations to adequately condemn the alleged actions of an unknown number of unknown persons with unknown motives, for which no evidence has been provided, for which they have no responsibility.

Although I agree with VES that the ME community has had a long standing PR problem, my feeling is that that has improved significantly in the last couple of years (largely due to progress in science) and is likely to continue. Pandering to Simon Wessely’s agenda by repeating condemnations of things which may or may not have happen a long time ago is not only unnecessary but would also be counterproductive by putting all those harmful smear stories back in the headlines.

[Edit: *I originally wrote “habeas corpus” instead of “due process”. It was suggested to me that the latter term would be more appropriate as nobody has actually been detained in this case.]

 

There are a great many mini-communities though, but people are still usually too sick to do much. Usually they are linked to a particular theme, action, or view.

My most threatening attack to anyone would be falling over and accidentally bumping them, if it ever happened.

 

Much of the ground around this video has now been covered by others, but there is one corner, at least, left to be explored. In what capacity might the recording have been held by the person who released it to VES under terms of strict confidentiality? The options are that it was either personal or in some representative capacity. If representative, that might include professional, investigatory or quasi-judicial.

It seems unlikely that there is a clique circulating abusive and threatening recordings for personal delectation-although it is impossible to be surprised by anything If not that, one wonders whether the disclosure was authorised under the terms upon which it was held. This would suggest a strong unknown agenda for the disclosure. Is VES being played?

 

I agree with Robert's analysis , (and several others). There may have been a death threat. There may have been rude comments. But that is irrelevant in the context of the manipulative nonsense produced by Peter White at Bristol claiming that these are an attack on science. Either they are attacks on people - which might be unfair but should be daily routine for psychiatrists and treated with compassion - or they are attacks on research. It is now clear that the attacks on the research are entirely valid so there is nothing for anyone to apologise for.

The whole framework of the argument in the blog seems to me a complete muddle. And as others say, this is the muck of history that does not need raking over. Progress is being made through the legitimate channels of peer critique. The NICE review will not be another day of evidence-laundering. Mainstream journalists are producing sensible analyses. And as far as I can see arguments about disease names and sexism are completely irrelevant.

 

If had a copy of it, I'd keep it. It could just be that whoever had it thought that it would be bad if it were circulated just to feed peoples' morbid curiosity?

 

The problem we seem to have is that the recording could have been distributed selectively, with a view to influencing opinion, yet secretively, to provide no opportunity for disapprobation to be shown. There is no way of knowing whose opinions might have been influenced. I don't see how the secrecy could be in any way of benefit to the general ME population, who, if the video is as described, would have stated their disapproval. Perhaps this is the point.

 

I don't know. If it is a hugely nasty attack on Wessely full of lies and threats then releasing in could 1) be unpleasant for Wessely and his family, 2) encourage the assumption that Wessely's critics are unreasonable and nasty, 3) spread lies and misinformation amongst patients who have good reason for being angry about Wessely's influence on their lives. I can see how there could be good reason for not wanting to spread the video over the internet now.

 

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I have huge respect for Valerie and while I agree that parts of her episode two of this blog post possibly inflame/resurrect the threats narrative unhelpfully, I would *never* describe her as preachy or on a one-woman ego trip. (Perhaps you are not familar with all she wrote about Karina Hansen, the Danish girl with ME?) So while I agree v much with @Robert 1973 in his post below, I think it unfair in this post to mischaracterise Valerie's efforts to improve PR for pwME.

 

I think concept of 'ME community' is very American but has been adopted here, mainly via social media. Agree entirely, we are not one block of people, we are individuals who happen to have the same hellish illness and who have often shared the same dire treatment, in whatever country we live.

 

I would agree with all that, but it is the point number 2 which needs investigation. If this video has been selectively available since 2011 it is possible that it has been used manipulatively. It may have been used as evidence without any opportunity for rebuttal or refutation.