1. Guest, to read the 'News in Brief' for the week beginning 18th May 2020 click here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

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

Discussion in 'Advocacy Projects and Campaigns' started by Andy, Jan 7, 2019.

  1. TiredSam

    TiredSam Moderator Staff Member

    Messages:
    7,735
    Likes Received:
    37,387
    Location:
    Germany
    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.
     
    Michiel Tack, Sean, Hutan and 19 others like this.
  2. Guest 102

    Guest 102 Guest

    Thanks for taking time and energy to explain more your position, Tired Sam.
     
  3. Trish

    Trish Moderator Staff Member

    Messages:
    22,628
    Likes Received:
    112,130
    Location:
    UK
    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/
     
    Last edited: Jan 16, 2019
    Sean, rvallee, Lucibee and 20 others like this.
  4. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    2,439
    Likes Received:
    16,183
    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.
     
  5. Andy

    Andy Committee Member & Outreach

    Messages:
    9,391
    Likes Received:
    67,771
    Location:
    Hampshire, UK
    Direct link to Valerie's response to Trish's comment, https://valerieeliotsmith.com/2019/...s-divide-rule-and-death-threats/#comment-3106
     
    Inara, JaneL, TiredSam and 5 others like this.
  6. strategist

    strategist Senior Member (Voting Rights)

    Messages:
    2,634
    Likes Received:
    25,695
    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.
     
    Last edited: Jan 16, 2019
    lycaena, JaneL, TiredSam and 9 others like this.
  7. strategist

    strategist Senior Member (Voting Rights)

    Messages:
    2,634
    Likes Received:
    25,695
    @dave30th could become our PR person, and shift his focus more towards producing articles for a broader audience and in particular decision makers.
     
    Starlight, JaneL, MEMarge and 2 others like this.
  8. strategist

    strategist Senior Member (Voting Rights)

    Messages:
    2,634
    Likes Received:
    25,695
    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.
     
    Last edited: Jan 16, 2019
    JaneL, MSEsperanza, EzzieD and 3 others like this.
  9. alex3619

    alex3619 Senior Member (Voting Rights)

    Messages:
    1,285
    Likes Received:
    9,715
    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.
     
    JaneL, andypants, EzzieD and 6 others like this.
  10. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

    Messages:
    641
    Likes Received:
    5,692
    Location:
    Toronto
    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.
     
    Sean, Snowdrop, JaneL and 5 others like this.
  11. strategist

    strategist Senior Member (Voting Rights)

    Messages:
    2,634
    Likes Received:
    25,695
    And the journalists who are working with the SMC need to know how untrustworthy the SMCs science really is.
     
    Sean, Dolphin, JaneL and 8 others like this.
  12. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    2,439
    Likes Received:
    16,183
    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.
     
    Chezboo, Gecko, ladycatlover and 9 others like this.
  13. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,544
    Likes Received:
    28,936
    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.
     
    Last edited: Jan 16, 2019
    rvallee, Sean, andypants and 6 others like this.
  14. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,544
    Likes Received:
    28,936
    There must be some way of challenging the SMC - they're such blatant bullshit artists, but in a position of real importance and presenting themselves as noble arbiters of what is reasonable.
     
    Sean, andypants, Dolphin and 8 others like this.
  15. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    1,076
    Likes Received:
    7,568
    Location:
    betwixt and between
    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)
     
    Last edited: Jan 16, 2019
  16. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    2,439
    Likes Received:
    16,183
    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.
     
    rvallee, Sean, Amw66 and 10 others like this.
  17. Roy S

    Roy S Senior Member (Voting Rights)

    Messages:
    433
    Likes Received:
    2,972
    Location:
    Illinois, USA
    I think it would be better to separate a discussion of strategies for media, etc. from these blogs of one patient's opinions.
     
    Sean, Hutan, Dolphin and 9 others like this.
  18. TiredSam

    TiredSam Moderator Staff Member

    Messages:
    7,735
    Likes Received:
    37,387
    Location:
    Germany
    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.
     
  19. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    2,439
    Likes Received:
    16,183
    That was my assessment too. But these ex cathedra pronouncements... brooking no opposition...its a strange position to adopt.
     
  20. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,544
    Likes Received:
    28,936
    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.
     

Share This Page