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

Nasim Marie Jafry said:
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
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Well we are in agreement there. I have always thought very highly of her and appreciated her efforts for the ME community (nervous about even using that phrase now). So I was very surprised and disappointed to see such a divisive and potentially damaging blog.

Nasim Marie Jafry said:
I would *never* describe her as preachy or on a one-woman ego trip.
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It took me a long time to go through her blogs and analyse them, and by the time I got to the bottom of the second one I'd had enough. I stopped at the section headed

So what should the community have done?
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I didn't like what she wrote and couldn't be bothered with any more detailed analysis so settled for the word "preachy". I suppose I could have used "sanctemonious". Or spent 10 minutes trying to think of a more diplomatic way of putting it.

Same with one-woman ego trip. She is one woman, this is her individual blog and she's writing on her own behalf. Ego trip? She's bringing a lot of her personal biases into this. Apart from making it about gender, she demands that the "ME community" police itself, Which assumes that the ME community exists and has any control over random nutters. This is the same argument James Coyne made during his infamous facebook meltdown. Yet about the media, she writes

"The media (however one chooses to interpret that particular term) no longer constitutes an identifiable, self-determining entity.
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So one the one hand she argues that the media doesn't really exist, but on the other she refers to the ME Community as if it is an identifiable, self-determining entity.

So after setting patient against patient, science advocate against PR advocate, bringing gender into it, applying different evidential standards depending on what she's arguing, applying different standards of "identifiable, self-determining entity" depending on what she's arguing, I was getting the impression that this is an article full of inconsistencies, personal bias and prejudice, and used "ego trip" as a shorthand for that.

I did actually put a lot of time and thought into my post, even if it did end up coming across as an angry rant. That was probably a result of me having come home from teaching for 6 hours, being knackered, and being worried about the amount of damage VES might cause with her blog. She put it up there, expressed herself in no uncertain terms and with little regard for whether it might offend or upset anyone, so she must reckon with feedback.

However, I accept that my last sentence may have been a little over the top, and would be happy to delete it if anyone complains. Nobody has yet.
 
TiredSam said:
Well we are in agreement there. I have always thought very highly of her and appreciated her efforts for the ME community (nervous about even using that phrase now). So I was very surprised and disappointed to see such a divisive and potentially damaging blog.


It took me a long time to go through her blogs and analyse them, and by the time I got to the bottom of the second one I'd had enough. I stopped at the section headed


I didn't like what she wrote and couldn't be bothered with any more detailed analysis so settled for the word "preachy". I suppose I could have used "sanctemonious". Or spent 10 minutes trying to think of a more diplomatic way of putting it.

Same with one-woman ego trip. She is one woman, this is her individual blog and she's writing on her own behalf. Ego trip? She's bringing a lot of her personal biases into this. Apart from making it about gender, she demands that the "ME community" police itself, Which assumes that the ME community exists and has any control over random nutters. This is the same argument James Coyne made during his infamous facebook meltdown. Yet about the media, she writes



So one the one hand she argues that the media doesn't really exist, but on the other she refers to the ME Community as if it is an identifiable, self-determining entity.

So after setting patient against patient, science advocate against PR advocate, bringing gender into it, applying different evidential standards depending on what she's arguing, applying different standards of "identifiable, self-determining entity" depending on what she's arguing, I was getting the impression that this is an article full of inconsistencies, personal bias and prejudice, and used "ego trip" as a shorthand for that.

I did actually put a lot of time and thought into my post, even if it did end up coming across as an angry rant. That was probably a result of me having come home from teaching for 6 hours, being knackered, and being worried about the amount of damage VES might cause with her blog. She put it up there, expressed herself in no uncertain terms and with little regard for whether it might offend or upset anyone, so she must reckon with feedback.

However, I accept that my last sentence may have been a little over the top, and would be happy to delete it if anyone complains. Nobody has yet.
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Thanks for taking time and energy to explain more your position, Tired Sam.
 
I spent quite a bit of time this afternoon reading carefully through both of @Valerie Eliot Smith's blog posts. I then spent even longer carefully writing my considered thoughts on the blogs and posting them at the end of the second blog for Valerie to consider.

As a personal blog she has, quite rightly, the power to moderate what responses she chooses to allow. She chose not to allow mine. I am not particularly surprised, as I was expressing my disagreement with some of her approach to the topic. I have decided to share it here exactly as I wrote it:

Responding to your description of what your friend from the PCC told you:
''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.''

This seems to suggest that you agree that people with ME were making unsubstantiated complaints. The only ones I am aware of were wholly justified complaints about misrepresentations of the PACE trial. My own complaint about the Daily Telegraph coverage was found to be 'unsubstantiated' by the PCC. I'm sure there were many others at the time. That is not harassment, and I'm sorry your friend seemed to be representing it as such. But we need to ask ourselves why that was. And the answer lies in the propaganda of the SMC, not in the behaviour of pwME.

As to the 'perception' that we are 'potentially violent' - that is not the responsibility of pwME but of a few shadowy nutters who may or may not have ME, and an orchestrated campaign by the BPS psychiatrists, supported and facilitated by the SMC. The target of criticism should lie there, not with the 'ME community', whatever that is.

I think it would be counterproductive to give credence to the 'violent patient' narrative propagated by the SMC by 'distancing ourselves' from it. It is nothing to do with us - any more than I, as a constituent of a particular MP, should have to 'distance myself' from the threats to him made by some nutter in the same constituency who I've never heard of before I am allowed to be fairly represented in the press.

I don't find your explorations into the murky depths of a video of unknown provenance helpful. 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. With your seal of approval on their claims, based, it seems to me on very flimsy evidence, the BPS people can have a field day perpetuating the myths about pwME. No thank you.

To quote Professor Jonathan Edwards:
''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.''

I have had ME for 29 years and care for my daughter who also has severe ME. It matters to me enormously that ME is better understood, both with more biomedical science and in the wider medical, care and public spheres. I have only been aware of and involved in on-line ME groups for a few years, and have not met or observed any sexism. I have seen dedicated and worthwhile advocacy efforts by both men and women in both scientific and wider community contexts. Not enough of course, but we are all sick, and fighting a wall of SMC and BPS generated prejudice.

I'm sure like any disparate group there are sexists among us, and I'm sorry if you and others have been treated in a sexist way. It is right that sexist behaviour is called out and stopped. But I don't see highlighting the divisions you see among people with ME is a helpful or constructive way to help us to work together for the next steps.

Thank you, Valerie for all your efforts on ME advocacy over the years. I'm sorry I can't go along with a lot of what you are saying this time. Nevertheless I look forward to see what constructive suggestions you make in the next blog post.
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EDIT:
My post has now appeared on the blog along with a response from Valerie.
https://valerieeliotsmith.com/2019/...rring-factions-divide-rule-and-death-threats/
 
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Well, well, well. VES's blog contains something very interesting. Follow the link to "Duchin"-type strategy (which is what I have always suspected, though not by that name). Follow the link to the first of the two articles. One learns that a client of Pagan International was Novartis. Novartis was formerly CIBA. Co-incidences do of course happen, but it is always worth investigating suspicious links.
 
Trish said:
I spent quite a bit of time this afternoon reading carefully through both of @Valerie Eliot Smith's blog posts. I then spent even longer carefully writing my considered thoughts on the blogs and posting them at the end of the second blog for Valerie to consider.

As a personal blog she has, quite rightly, the power to moderate what responses she chooses to allow. She chose not to allow mine. I am not particularly surprised, as I was expressing my disagreement with some of her approach to the topic. I have decided to share it here exactly as I wrote it:



EDIT:
My post has now appeared on the blog along with a response from Valerie.
https://valerieeliotsmith.com/2019/...rring-factions-divide-rule-and-death-threats/
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Direct link to Valerie's response to Trish's comment, https://valerieeliotsmith.com/2019/...s-divide-rule-and-death-threats/#comment-3106
 
I am not sure we can win the media war without defeating the SMC. Perhaps that is what we need to do. The SMC will probably continue to produce the same propaganda until doing so becomes too much of a liability. My feeling is that even the SMC was affected by the PACE gate and that it has lost some of its confidence.

There has been some real progress and the situation is not as dire as it once was. The strategy of exposing the problems with PACE is working. We just have to keep following it. If you have noticed, the PACE authors have no real answers to the criticism. This strategy has also brought us new friends and allies.

PS: at least in a more eurocentric context.
 
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It would be useful to have an article that allows decision makers to understand the need for blinding and adequate control groups. We have seen repeatedly how CBT/GET proponents are apparently able to easily impress some decision maker with embarassingly bad science. Like recently in Belgium (or was it the Netherlands?) were the CBT/GET people showed data to a decision maker that allegedly supported the use of CBT. It was data from their clinic, not even from a formal study, without a control group. As result, CBT is still recommended as treatment. They have such an easy time manipulating decision makers, journalists etc.
 
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alex3619 said:
We can when the science is advanced enough, but not before that unless the SMC is directed countered. That has been my position for seven years now.
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I concur.

We need to be creating a narrative around SMC, basically how its the toy of Wessely and co, and that we can't really talk about the PACE corruption without also talking about the anti-science media centre as a propaganda tool of private and corporate interests. The 2 are linked and need to sink together.
 
ScottTriGuy said:
I concur.

We need to be creating a narrative around SMC, basically how its the toy of Wessely and co, and that we can't really talk about the PACE corruption without also talking about the anti-science media centre as a propaganda tool of private and corporate interests. The 2 are linked and need to sink together.
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And the journalists who are working with the SMC need to know how untrustworthy the SMCs science really is.
 
Does no-one think it a little odd that VES appears to be threatening @Trish ?

That response by VES is very disappointing. She does not seem to understand the effect of publishing information which SW has not wished to publicise, and which the person who gave her the information was unwilling to publicise him, or her, self, for reasons which we can only guess at. If SW mentioned it to any of the reporters who have described the threats against him it must have been on the basis that they would not use it. It seems far more likely that it was not mentioned. If anyone understands her motivation it would help if they could explain it.
 
chrisb said:
If anyone understands her motivation it would help if they could explain it.
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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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strategist said:
@dave30th could become our PR person, and shift his focus more towards producing articles for a broader audience and in particular decision makers.
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Or the other way round: We/ S4ME could do a bit PR for @dave30th 's journalistic work – and for other S4ME members' expertise.

For example, a subforum could provide „quick information“ presenting some of Tuller's most relevant texts as well as the S4ME PACE briefing paper and other forum members' selected papers, each with a lead paragraph for readers unfamiliar with ME.

The subforum could have a clear structure, focus on the most relevant bits of science / science criticism and keep it to a minimum of contributions.

(And have a glossary generated from https://www.s4me.info/threads/acronyms-and-abbreviations.457/ )

Just dreaming....

(Tried to edit for clarity.)
(Edit2: Was only able to skim the thread, so apologies for not taking a position on more relevant on-topic questions)
 
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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
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Yes, certainly. But providing information and saying, "trust me, this is true" is somewhat less valuable. In fact, it is not at all valuable. There is no way of assessing the merits of this evidence or the accuracy of the statements. It does not need a lawyer to see that.

There is a strange sentence in the Sunday Times piece from 2013. "Wessely lists his tormentors who cannot be named for legal reasons". One might have thought it appropriate to enquire whether any legal proceedings had been brought in respect of this tape and whether this was one of the matters referred to, although it is hard to understand the nature of any relevant proceedings which might have led to such an outcome. Is the creator really as anonymous as claimed? Something about this is simply not right.
 
chrisb said:
Does no-one think it a little odd that VES appears to be threatening @Trish ?
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She's trying to sound vaguely menacing, without actually threatening anything. Typical lawyer bluster. If she's hinting at a possible action for libel, she'll end up having to sue herself for choosing to publicise Trish's comments on her website. I think the most likely reason why she published Trish's comments was so that she could sound vaguely menacing as a warning to others.

One thing's for sure - whatever she thinks of herself as a lawyer, her blogs so far show that she's completely unsuitable for PR work, and she isn't going to unite ME sufferers at all, in fact the opposite, especially if she reacts so aggresively to people expressing different viewpoints.
 
chrisb said:
Yes, certainly. But providing information and saying, "trust me, this is true" is somewhat less valuable. In fact, it is not at all valuable. There is no way of assessing the merits of this evidence or the accuracy of the statements. It does not need a lawyer to see that.
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I guess that we all need to make our judgements on the relative value of just VES's claims. For me, they're still of some value, and I can see that there are some legitimate reasons for not wanting to post a video like the one described on-line.

There does seem to have been a long campaign using vague accusations about the behaviour of unnamed individuals to smear the large number of patients concerned about the work of Wessely and his colleagues. In that context I can understand people being sceptical of all claims related to the topic, but I still find some things of value in just VES's claims/views, even if there's still a lot I disagree with.

I don't think VES did herself a favour with the way she presented her thoughts on this, but I also think some people are being overly harsh. It's a difficult topic for a patient to write about and get the tone right so I think it's worth giving VES some leeway. It's good to have people coming at things with different viewpoints and attitudes, and best not to be overly critical or else there's a danger that people might become more hesitant to post views that they think could be unpopular. I've been a bit surprised by some of the heat in this thread.
 
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