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

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:

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.

 

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.

 

I started a new thread:

 

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?).

 

She writes - and this was the message I took with me:

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.

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)?

 

Au contraire, history is replete with unscientific claims dominating because of a good PR campaign. PACE comes to mind.

A good PR campaign and hard science is best. The former is necessary in any instance, the latter not so much.

 

@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.

 

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.

 

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.

 

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.

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.

 

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.

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?