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

I agree there's nothing wrong with people researching what interests them, thinking about how things could be done and writing blogs making suggestions. Valerie is entitled to do that, and there are doubtless valuable ideas in her blogs.

I'm sure we all agree with Valerie's basic premise of her blogs:
The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.
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But it's also perfectly legitimate for other people to spell out why they disagree with an approach someone has taken and an analysis they have made of a situation, and tell them how their words and actions come across to us.

I have worked in committees and teams quite a lot. I am someone who tends to like to suggest ideas and ways forward for the team. I often suggest things that are not a good idea. I freely admit I don't always have particularly good judgement about the best way forward for a group. I am therefore always grateful when my team-mates tell me I've lost the plot. That's the point of doing stuff in teams or groups of people with different perspectives on things. It stops us going off on tangents that others think are not useful.

I have no idea whether Valerie has worked on this before publishing it with others to test her ideas. I would encourage her to come here and discuss things with us so we can work together rather than us appearing to snipe at her from a distance and her hitting back. I can understand that she has been disconcerted by some of our reactions to her blogs. It can be hard to hear when you have worked hard on something and think it is helpful that it doesn't completely come across as you had hoped.
 
Oh sure - I certainly wasn't saying that people shouldn't criticise what VES has said, or that they shouldn't be much more critical than I've been. It just seemed like there was more heat to some of the criticism than I would have expected. I guess TiredSam did say that maybe he'd gone too far with one bit, but I thought there were other examples too. I probably shouldn't be commenting on this without going back through the thread, but I was just giving my impression on this.
 
I don't really see the need or point of bringing up a lot of the stuff in this latest post. I guess she is trying to make an analysis of the situation, but just ends up setting focus on surrounding issues.

I do agree with her, about what I think is her main point - that it would have been good if the different organisations that work on behalf of patients made a joint statement when this allegations about threats came into the media - at that time. But wether or not this video or other threats exist or not, is really besides the point in my opinion. Statements of threats happening was made in the press, and it would have been good if a plan to act in a co-ordinated way across patients organisations existed.

One thing I would like to add, about the statement -"This series of posts focuses on the situation in the UK." I agree that most nations have their own unique situation with the bps-crowd (as the LP-thing we have going). But how we as patients are percived crosses national boarders. Especially what is happening in the UK and US, how patients and the organisations respond will reflect on patients everywhere - no pressure... ;-) It's not just patients that connect online and share - so does the bps-crowd. As when there was an action agains a danish speaker in the US, that is beeing used as an example of "ME-patients bad behavoir" that we should be ashamed of, all the way up here in Norway.

Ehm, lost my train of thougt... posting anyway :)
 
One point that Valerie raises that I think is worth considering is the point about complaints:


Dangerous?

Some years ago, I was discussing the media coverage of ME patients with a friend. He was not inherently unsympathetic but his knowledge of the illness and its history was confined to the standard, mostly negative, media stories (we hadn’t discussed the subject previously in any detail). In his case, the media aspect was particularly relevant as he was closely associated with the now-defunct Press Complaints Commission (PCC)

It emerged during our discussion that ME patients were a PCC nightmare. The main groups which the Commission considered to be the most dangerous were animal rights campaigners, climate change activists (at this time, the extreme activists were still regarded as highly dangerous) and ME patients.

According to my friend, ME patients were amongst the most vocal groups who were creating major problems for the Commission at that time. The serial complaints made by the community about press coverage were found to be mostly unsubstantiated and, by extension, causing harassment to members of the Commission. Moreover, the perception of ME patients was of a disaffected, highly-organised and potentially violent group, in pursuit of its own misguided agenda.

My friend was a well-informed, media-literate, highly-regarded academic and not an unsympathetic person. However, the fact that this was his perception of the ME community was – and still is – a sobering reminder of how much work needs to be done to repair the damage from decades of entrenched stigma and neglect.

The PR offensive against the community has been sublimely effective. There is an enormous task ahead if we are to turn that around and change the narrative.
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I have a general feeling that just because one can complain doesn't mean one should complain. People may stop listening to you if you complain too much, like the boy who cried wolf once too often. You also may make enemies of people such as journalists with too many complaints.

Though there were certainly media articles where complaints were justified.
 
Dolphin said:
I have a general feeling that just because one can complain doesn't mean one should complain. People may stop listening to you if you complain too much, like the boy who cried wolf once too often. You also may make enemies of people such as journalists with too many complaints.

Though there were certainly media articles where complaints were justified.
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Yes. This is such a difficult one though, and it's hard to know how much we should let legitimate concerns about prejudices stop us from making justified complaint.

There's also the problem that the patients who are likely to consider these matters, and perhaps avoid making a complaint because of it, are also the ones who would be likely to send the most well reasoned and cautious complaints. If these people aren't sending carefully worded explanations of why the aritcle is a problem then we might just be left with poorly phrased expressions of pain and anger.

I never know what would be best, but my natural laziness means that I'll rarely complain about the dross that's piled down upon us by sections of the UK media.
 
Does anyone take any of the media seriously enough, apart from those engaged in it (or them), to warrant complaint? It's all only entertainment.

It is though perhaps to be regarded as disturbing that this "highly regarded academic" involved with the PCC felt able to hold and express such views whilst being ill informed about the problems of the complainants. It comes as no great surprise.
 
Esther12 said:
Providing accurate information is valuable for helping people make informed judgements? I don't think that there needs to be any more to it than that.

I guess that can be complicated by the fact that VES seems to be arguing for what she sees as a more pragmatic approach to these matters, and some people see her blogs themselves as likely to be unhelpful in pragmatic terms. I always find it so difficult to work out what's likely to be helpful/unhelpful that I prefer to just focus on being as accurate as possible. There are points VES puts forward that I don't agree with, and so far I've not seen her suggest anything that I think is likely to be useful re the problems we have with the media, but personally I'm pleased to know about this video just because I like knowing anything about the issues in this area, even if it is as something as seemingly trivial as some random person making a threatening video about Wessely that is only briefly available on-line.
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It's definitely worth talking about the fact that our public perception is a serious problem. But that is a situation in which we are victims of disinformation and have no influence over how it will unfold in the future anymore than we did in the past (and not for lack of trying!).

Maybe it seems to Valerie that we can do something about it. Unfortunately that's not the case, yet. We are facing sabotage from within the very institutions tasked with helping us from people with no qualms about abusing their influence over public perception by spreading disinformation through a compliant press. This is not a fight we will ever win until there is a paradigm shift that lifts the suspension of disbelief. It's like fighting Trump over fake news. He will always out-fake news everyone. We will win with the truth, not perception of the truth (ain't that familiar?).
 
chrisb said:
If anyone understands her motivation it would help if they could explain it.
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She writes - and this was the message I took with me:

My observations concern the perceptions about the ME community as seen from the outside and the self-evident internal tensions.
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We don't often get feedback about the "ME community" from the outside. Often, feedback isn't nice or comfortable, but it is important for progress and development. Feedback is another one's perception of oneself, and it might seem strange and wondrous, maybe unreal and incorrect. Still, I often find it worth reflecting on such things. Often, at least a grain of truth can be found (but of course not always).

Once, during a workshop, we had to describe the others by using car brands. I was compared with an old VW bus from the 60s and 70s and with a Bentley (I didn't know what a Bentley was, then, and tbh, it's not what I find asthetic :)), which was weird for me, but in a way illuminating.

chrisb said:
Does no-one think it a little odd that VES appears to be threatening @Trish
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Trish wrote:
"In fact it reads to me as if you, as a respected lawyer, have been used by the SMC/BPS people to serve their purposes of giving credence to the stories of harassment that may or may not have happened."
Now it is correct to stress Trish is communicating an impression, not a fact. The burders can blur, so there's a certain potential here. But it feels like an attack (to me) - I hope it's ok @Trish to say my opinion? So, Valerie's reaction is understandable to me. How would you feel if someone told you he feels you're behaving like the enemy's puppet? (Now I know what you wanted to say, Trish, and it's not a bad point, but it's provocative, and this will lead to certain reactions.) I feel both have the right to express their opinion and feelings in this discussion. And, although Trish's post is critical, Valerie posted it.
 
Another thought that occurred to me:
For the perception of the "ME community" or any other group - take stars - facts often are irrelevant. What counts is the picture to the outside. Valerie argued, in order to improve "our" position, this perception needs to be changed. In this process, facts can be helpful, but it's not everything. For example, often, experts are experts by perception, not by facts. Wessely&Co's perception to the outside is primarily positive, they are the experts, why else would they have all those titles and prizes? They are real scientists and heroes. In fact, they're not, but who cares (besides us)?
 
Inara said:
We don't often get feedback about the "ME community" from the outside. Often, feedback isn't nice or comfortable, but it is important for progress and development.
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It depends what you mean by outside. VES has had ME for many years, so on her definition is presumably part of what she calls the 'ME community'. She is also a member of this forum and free to discuss her ideas here if she so wishes.

Inara said:
Now it is correct to stress Trish is communicating an impression, not a fact. The burders can blur, so there's a certain potential here. But it feels like an attack (to me) - I hope it's ok @Trish to say my opinion?
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Of course you can express your opinion. I agree my comment was likely to be disconcerting for VES. I was not the first person to suggest on this thread that her blog could give the impression that others were using her for their purposes. She has responded that this is not the case. If you read my reply to her I made it clear that I was not making an allegation, simply informing her of my thoughts on reading her blog.

I am sorry if I did upset VES, but I think it is important when any of us suggest advocacy actions we are made aware of possible pitfalls of our suggestions, and possible differing interpretations of what we are saying, and if not everyone agrees with an approach to advocacy we are suggesting.
 
What Robert 1973 and Trish said pretty much covers my view, plus a few points from others.

In particular:

At this point in time the video remains untested evidence. We don't know its provenance and context.

Were all reasonable steps (including forensics) taken to identify the source of the video?

Was the source identified? If so, then why were they not prosecuted for such a serious offence?

Is this an isolated case? Was it a lone individual? Were they significantly connected to the ME world?

Etc.

What we do know for a fact is that in the UK the highest level of legal ruling so far on alleged harassment and threats, which was also the highest possible level of ruling on evidence (as opposed to points of law), found absolutely no case to answer, and that ruling was not appealed.

This much we do know. (Courtesy of Alem Matthees.)

As to any demands from the BPS crowd or their fan club that we have to overtly condemn this stuff, that is just a standard propaganda tactic. Its purpose is to misdirect and malign by association, to reframe and control the narrative, to smear from the start.

We are not obliged to keep proving our bona fides on this matter. We are not obliged to submit to this blackmail until it has been proven to an acceptable legal standard that we have any sin to answer for. Pretty damn sure I personally don't, nor anybody I have dealt within the patient community.

Does Sir Simon, one of the most senior people in the UK medical establishment, proactively and personally condemn every incident of medical abuse in the UK? Do profs Chalder, Sharpe, White, Crawley,...? If they don't, then why should we for our community?

Where are the convictions? If the BPS crowd are claiming any individuals or groups of patients have behaved in this way, they should show their evidence to the police, make a formal complaint, and get a conviction, or shut the fuck up.

The best solution for this, I suggest, is not to bow to demands we make a tokenistic condemnation of it, but instead for us to demand a proper high-level formal public inquiry into the claims of serious harassment and threats. If it turns out that the patient community has anything serious to own, then so be it – and the sooner we do it, the better. If we don't, and it turns out we are not the baddies in this, then that also needs to be made clear to all, and the guilty parties held to proper account.

So far the formal evidence is on our side. When our accusers had the chance to slam-dunk this, they came up with a big fat zero.

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Robert 1973 said:
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)
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I agree with VES that the science alone is not enough. But it is necessary for the rest of it to work. All the PR in the world counts for diddly squat if we don't have hard science behind it.
 
@Inara I don't particularly wish to further the discomfort caused by this thread. I would just say in response to your post that VES worked in an adversarial environment where evidence is tested in a robust manner- apparently unlike psychiatry. I would just say that the argument that a CPS lawyer would advise in favour of prosecution on the basis of evidence which cannot be adduced in court is unpersuasive.
 
Trish said:
It depends what you mean by outside. VES has had ME for many years, so on her definition is presumably part of what she calls the 'ME community'. She is also a member of this forum and free to discuss her ideas here if she so wishes.
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She retold what she was told by someone who once was a member of the Press Complaints Commission, where they compared ME activists with animal rights activists, who obviously share our fate. For me, this is valuable feedback from the outside.

Her opinion, as I understood, is that we need to address the perception to the outside. I agree this is absolutely crucial. As an example she brings the (uncomfortable) death threat topic. It's uncomfortable because most of us weren't a part of this, and most feel it's unjust to apologize for something we haven't done; also, most of us will know these were stupid, damaging actions, even if understandable. But we still can and do distance ourselves from it, which is right.

Valerie uses the past tense. So I don't understand this example as an appeal to distance ourselves today and get active, but to show how perception can be influenced. Also she shows by this example that we're not in a media war against the BPSers because, due to the lack of reaction then, we never started it. I agree, making a statement today about things that are long past will play into the hands of the BPS group. But maybe it would be wise to have a statement at hand whenever this topic is brought up by the BPSers again.

Wessely&Co. achieved that the outside thinks the ME community are the bad guys, and they are the good ones. It's simplistic, but many many people categorize into (morally and ethically) good or bad. And as we know from Hollywood movies, it's ok to kill the bad guys.

We need to change that the "ME community" is categorized as the bad guys, amongst others.
 
@chrisb, as a lawyer, Valerie Elliot Smith also knows how important confidentiality and secrecy is. The safety of a client's information comes first. So I assume she has the facts but mustn't share the details. That's not uncommon in such circles.

Also, before court, facts come after influencing an opinion, namely the judge's opinion.
 
Inara said:
She retold what she was told by someone who once was a member of the Press Complaints Commission, where they compared ME activists with animal rights activists, who obviously share our fate. For me, this is valuable feedback from the outside.
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Ah, OK, sorry, I misunderstood who you were referring to as an outsider. I agree it is useful information, though I think I interpret it differently from VES in terms of what 'we' should do about it. Which is fine. We each have our own opinions and can discuss them.

You make a good point that we should not today raise the issue ourselves, but it's good to know how to respond when the issue is raised by others.

My personal preference in a case like the Reuters' article about the challenges to Cochrane is to simply not respond directly to the stuff about personal threats that may or may not have happened in the past, but to focus any response on the fact that the challenges to Cochrane were justified and scientifically sound criticisms of the science. Getting into a media argument about personal threats only feeds that story. Just my opinion. Others will doubtless disagree.

Edit: I am going to step away from this discussion about VES's second blog post. I am in danger of repeating myself too many times, and the thread is about VES's blog, not my response to it!
 
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Trish said:
Of course you can express your opinion. I agree my comment was likely to be disconcerting for VES. I was not the first person to suggest on this thread that her blog could give the impression that others were using her for their purposes. She has responded that this is not the case. If you read my reply to her I made it clear that I was not making an allegation, simply informing her of my thoughts on reading her blog.
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VES can't have it both ways. On the one hand she is claiming to be showing us how we are perceived from the outside and making suggestions as to what we should be doing about it. I expect she hoped her views would be accepted and appreciated.

However, when someone politely tells her how her blog is being perceived from the outside (ie by many ME sufferers who aren't VES), she doesn't accept or appreciate this feedback at all.

Looks like double standards to me. Again.
 
Inara said:
@chrisb, as a lawyer, Valerie Elliot Smith also knows how important confidentiality and secrecy is. The safety of a client's information comes first. So I assume she has the facts but mustn't share the details. That's not uncommon in such circles.
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I wasn't aware that the person who gave her the video was a client protected by lawyer-client privilege. And saying to a judge "I have the facts but I mustn't share the details" will usually lead to him concluding that you haven't discharged your evidential burden and wondering why you bothered wasting the court's time in the first place.

Inara said:
Also, before court, facts come after influencing an opinion, namely the judge's opinion.
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There could well be some truth in that, but it's not how it's supposed to work.

It's all very well to say how we should have responded in the past. But if memory serves, articles about ME until a couple of years ago only had the SMC as their source, we didn't get a look in. So if we had made a statement, there's no reason to suppose it would have been included in the article, more likely it would have been filed away by the SMC to be spun to their advantage later.
 
TiredSam said:
It's all very well to say how we should have responded in the past.
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I think she used that as an example to show that changing the perception is needed. For learning and improving, the past is suited.

I think someone who contacts Valerie Smith with delicate information will do so because he/she will know that she'll keep to her word and treat this information with the needed care. It is known that whistleblowers don't have an easy life after they whistleblew, so I can understand that the person who provided the data wants to remain secret.

This is not a trial before court, it's a blog. There are even non-public processes if delicate topics are involved so the public won't know the facts.

TiredSam said:
There could well be some truth in that, but it's not how it's supposed to work.
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Everyone who's regularly before court as a lawyer - even "new" lawyers - tell me that's how it is. There are many things that should be, but reality is what it is. Of course, that doesn't mean to let go of values and principles.

I don't understand, through the entire thread, why it is railed against Valerie Smith in such a way? (Edit: My petsonal impression.) As far as I know, she was very engaged for people with ME, and helped where she could. Why do we go against our allies? It's something that happens regularly. Critique is needed, but it was harsh at times, and that's not necessary.

For me, I just want to stress that I think there are some good points in the texts. They shouldn't be dismissed because there are weaknesses.

And if people dislike Valerie that's ok, it's their choice; but this shouldn't influence if some of the made points maybe have some validity.

Do most people think here the "ME community" has no problem at all, e.g. with the perception to the outside?
 
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