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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. rvallee

    rvallee Senior Member (Voting Rights)

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    This is a good plan. The issue isn't with planning, we cannot work the plan (yet). If the capacity existed, this is roughly what would have been done already. We cannot provide an alternative to the news media because past disinformation has painted a perception of being toxic and unreliable (something which some have taken to mean dangerous). We also cannot compete with the resources the SMC have at their disposal. This isn't David vs. Goliath, it's Goliath vs. the piece of meat he's currently chewing.

    I am pretty certain discussions around something like this plan were held decades ago, and constantly since. We already know what to do. We just don't have the resources to implement it and are facing sabotage from within. Until the medical institutions see us as something other than whiny annoying non-patients, we cannot effect change using a strategy that relies on good faith and good will from the institutions that would implement that change.

    They're all valid ideas. They're just old ones that have been tried and failed because of the particular circumstances of this disease. One thing I've noticed lately is that the public perception of us is far more friendly than the professional perception medical professionals have. It's institutional change that needs to happen, and it's impossible to tell what will be the tipping point. Unfortunately we will not benefit from celebrity concerts broadcast to millions.

    It comes from a good place. I just think Valerie doesn't really accept yet that our opposition does not, that we are not in a rational battle of ideas, but rather one of politics and ideology.
     
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  2. Roy S

    Roy S Senior Member (Voting Rights)

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  3. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    Here's a diagram for understanding power. It might be useful to people or not. My personal view is that we've already made the breakthrough to the First and Second Dimensions. The trouble with activism is usually getting out of the Third.

    dimentions_of_power.png

    The diagram was useful to me for analysing the debate about PACE, but it must be stressed that it is a generalisation.

    Source - Power and Powerlessness: Quiescence and Rebellion in an Appalachian Valley (1982) John Gaventa
    ISBN-10: 9780252009853
     
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  4. NelliePledge

    NelliePledge Moderator Staff Member

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    Interesting @Luther Blissett i think from some of the other social media groups I’m on there are a still a lot of people out there who are in the uncritical/feel powerless zone.
     
  5. Esther12

    Esther12 Senior Member (Voting Rights)

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    Creating any sort of unified media response from patient charities is going to be more difficult while we still do not know where Action for ME stand. It does seem that the PACE scandal has made them realise that they've made some mistakes in the past, but if they're still promoting Hazel O'Dowd, SEE ME, etc, then it seems that they're still far from doing a useful job for patients. Maybe they're now less willing to get in the way of a useful unified position from charities?

    I'm sure there's something to be learnt from the way some problems with the way VES's called for greater care about how we present ourselves and unity spawned an over-reaction from some critics, and then an over-reaction to the criticism from VES. I'm sure that no-one thinks this is an ideal intro to her blog. Maybe it's just that people don't like feeling that they (or their group) are being criticised? As well as learning a lesson in how we interact with other patients, it's also been a reminder to me of trying to react gently to others (journalists/doctors/academics/etc) who really piss me off. A few of our advocates who were best of talking to infuriating scumsuckers in a kindly manner are no longer able to contribute, so I guess it's up to the rest of us to try to pick up our game.
     
    Last edited: Jan 23, 2019
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  6. TiredSam

    TiredSam Committee Member

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    Well thank goodness nobody here used the words "liar" or "fantasist". "Infuriating scumsuckers who really piss me off" might not go down so well though, do be careful @Esther12.

    EDIT: VES is a member here and can read this thread, yet instead of engaging or collaborating, she just chose to quote one phrase she could make the biggest fuss about. It may have been a mistake for me to write it, but not nearly as big a mistake as it was for her to write her blog without thinking through all the consequences or taking the views of others on board. You have just rather undermined your own argument by using words that can be misinterpreted and quoted by anyone with a mind to do so.
     
    Last edited: Jan 23, 2019
  7. Andy

    Andy Committee Member

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    Just so I'm clear @Esther12 , you are dealing with the people who disagreed with certain aspects of the blog gently by labelling their reaction to it as an overreaction?
     
  8. TiredSam

    TiredSam Committee Member

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    Welcome to @TiredSam's time machine, in which we can travel back in time to relive events again and again until we get it right, a bit like groundhog day. Let us set the dials and take a trip back to the evening of January 14th 2019 and see if we can get it right this time. First attempt, here we go ...

    TiredSam arrives home from work tired. So tired in fact that, instead of going on the forum, he just pours himself a glass of wine and turns on series 3 of Crazy Ex-Girlfriend, giving it one more chance to prove that it hasn't gone downhill since series 2. As a result, his "one-woman ego trip" post is never written.

    Some time later, VES starts her #3 blog as follows:



    Well thank goodness VES wasn't able to include the sentence "I have been accused of being on a one-woman ego trip", that's a lot better. Virtuous and innocent, TiredSam seeks those who caused VES to write such a thing to give them a good finger-wagging.

    Hmm. Still not quite happy with that. Let's go back in time and see if we can improve on things some more ...

    TiredSam arrives home from work tired. So tired in fact that, instead of going on the forum, he just pours himself a glass of wine and turns on series 3 of Crazy Ex-Girlfriend, giving it one more chance to prove that it hasn't gone downhill since series 2. As a result, his "one-woman ego trip" post is never written. Many other forum members are also by some co-incidence watching Crazy Ex-Girlfriend. Those on the forum have nothing but agreement with VES's blog, and express this with fullsome praise in many posts. Meanwhile, many lovely pictures are posted on the S4ME cat thread.

    Some time later, VES starts her #3 blog as follows:

    So that's super and everyone's happy. The only problem is that later someone makes a post with the words "infuriating scumsuckers" and "really piss me off", which lowers the tone and gives an opening for someone to misinterpret it and take offence. Not only that, but the post contains the following:

    Which causes a few more recent advocates who spent a lot of time and effort writing thoughtful and diplomatic posts on this thread to now feel slighted and offended.

    A cat lover also notices that their thread has been referred to in a satirical post, takes offence, and the incident causes a riot amongst the ME Cat-Loving Community.

    My point is that playing the "He said something horrid and now I'm offended" game is very easy, and writing a post that's bomb-proof in this regard is virtually impossible, although there is a way - complete agreement and admiration.

    I'm not sure that hand-wringing and tone policing is the answer. We've been called vexatious militants and worse by the BPS crew, and nothing we have said or done has made a blind bit of difference one way or the other. Same with people who are going to take offence just because someone expresses a different viewpoint - in that case it doesn't really matter how you express it. I accept that my comment was over the top, and with hindsight (or even a bit of foresight) I wouldn't have written it. But really, VES was going to accuse anyone who thought her evidence was a bit thin of questioning her integrity and implying she's a liar and a fantasist even if I'd never existed. To be consistent she should now be demanding an apology from the entire "ME Community" because someone said "one woman ego trip".

    I notice she hasn't responded to any substantive points that have been made by anyone, diplomatically or otherwise. Unless telling people that they haven't understood her blog properly (the "Have you read the study?" technique) or talking about "allegations" counts as a response.

    Sometimes you can't spend all your time worrying that someone might be offended, especially if they probably will be anyway. Critcal debate on matters that affect us is important, and anyone who puts forward their ideas should not only expect it, but welcome it. Why wouldn't they?
     
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  9. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    I have posted the following response on Valerie Eliot Smith's blog, Changing the narrative #3:

    "Thanks for writing this blog. Creating a media steering group is an interesting idea. I do have some questions about it.

    1) If the media steering group is constituted by a coalition of representatives from the main patient organizations in the UK, wouldn’t that slow things down? If most members have to give their permission to a consensus response, that might take longer than is currently the case. I do not have much experience in this, but I suspect patient organizations are often asked to comment on a newsfact or a new study that came out. In such cases it would be difficult to agree on a response in time within a media steering group. On some subjects there is quite a lot of disagreement between the main charities. In some cases even a “pragmatic consensus” would be hard to achieve. I’m worried that much energy and frustration will be wasted in reaching a consensus, while the benefit of reaching such a consensus is not sufficiently clear.

    2) Working with a media streering group could also water down the content of the response as it has to be a consensus where most main patient organizations in the UK agree on. This could lead to a situation where some arguments are no longer made. For example: in the past some patient charities were rather restraint in criticizing the problems with the PACE-trial and research into behavioral interventions. If at the time, media responses by the ME community were directed by a media steering group, this could have led to less focus on the flaws of the PACE-trial.

    3) “Establishing an easily-accessible centralized media point of contact for dealing with day-to-day enquiries” sounds good. But I wonder if this is really lacking today. Journalists know the main UK charities (which have been around for around 30 years) pretty well and have interviewed and contacted their media spokesmen in the past. With a new media steering group, it could take a while for journalist to know this is the communication person or group they need to contact

    4) Finally: I think most people would agree that the narrative on ME has been dire and that the voice and narrative of patients have not been sufficiently heard in the media. But I’m not sure if this is due to the ME community handling their media communications badly, or that the odds are simply stacked against us. Could you give some examples in the past where the media response was inadequate and working through a media steering group would have provided better results? There seems to be some disagreement about the “threats and harassment” –episode (a difficult subject), so I wonder if you could give another example. It would help to visualize how a media steering group would work and how things would be different from now. I think most would agree that newsarticles about whether or not ME is a “real” or “disputed” condition are not helpful. But since this narrative comes mostly from papers and tabloids, it’s not yet clear to me how a ME media steering group would be able to change this.

    Many thanks in advance,"​
     
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  10. Trish

    Trish Moderator Staff Member

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    I agree with @Valerie Eliot Smith that the question her blog addresses is an important one, but I don't think it is THE important one:

    my bolding.

    I agree we are up against seemingly insurmountable forces of the BPS supporters and the Science Media Centre. But I don't think the smearing of the reputation of the 'ME community' is the biggest issue we face.

    Far bigger is the power of the BPS group to define what is good and bad research and to re-define our illness in any way that suits their political and insurance industry masters. And as spoonseeker's latest blog points out, the BPS people and the NHS simply move the goal posts and scupper us at every turn.

    I think our biggest enemy now is not our reputation, but the deliberate mis-classification of ME with the BPS model, and the latest re-classification of ME as MUS/FND and channelling us into IAPT, which puts us all in danger of losing the little we have gained.

    I don't understand how a PR consultancy could help with that particular nightmare.

    My conclusion is that VES has clearly put a lot of thought and work into this blog, but it's all pie in the sky if the premise on which it is constructed, that the charities will, and even should, work together on such a project, is a non-starter.

    While the biggest charity, AfME continues to work against us by producing poor quality and potentially harmful materials, and showing no understanding of the importance of evidence based advice, I for one wouldn't want them involved in such a project.

    I would prefer to go on supporting the ME Association which does all the things VES suggests should be done, though on a smaller and quieter scale which could be increased with greater funding. The addition of the grass roots activism supported by #MEAction has been a positive addition to the effort.
     
  11. chrisb

    chrisb Senior Member (Voting Rights)

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    I think that VES's response has been most unfortunate. To commend those who express agreement and vaguely threaten and then totally misrepresent the position of those who don't is not a good sign. She has done much valuable work in the past, which should not be forgotten. Thishas not added to it, at least not in the way intended.

    Like VES I think this video to be of potential interest, but for entirely different reasons.

    She has edited the original post to say she knows the source. By this I presume that she means that she knew who gave it to her rather than who made and posted it. It is not indicated whether the "source" viewed the original as posted on the internet, and if not who recorded it and how it came into his or her possession.

    We are told of the innumerable complaints to the PCC and how this was even considered harassment of it members. The complaints were not upheld. Newspapers must have filed elaborate defences with bundles of supporting evidence. One wonders whether the SMC might have assisted in the compilation of evidence and advised generally. It would seem reasonable, as they were, probably, the original instigator.

    It is interesting to speculate on whether the video might have been viewed by the judges of the absurd Maddox prize, or whatever it was called. There always seemed to be something missing from that episode-perhaps this it.
     
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  12. Esther12

    Esther12 Senior Member (Voting Rights)

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    I reckon most people would realise that my use of 'scumsuckers' to describe people we should be trying to communicate gently with was intended as a joke, illustrating what a difficult situation we're in when so many of the people with power over us that we need to try to reach out to and influence have behaved appallingly and treated us without respect.

    I also thought a joke like that might help undercut the 'only adult in the room' tone that often comes with trying to talk about the problems with the way other people express themselves and show that I know I have (and will) expressed myself using language that can be counter-productive, recognising that I'm far from living the ideal I promote.

    edit: One reason why I may have been less critical of problems with VES's tone (which I did find annoying in some places) is that I tried to think about how I'd write blogs making the arguments she wanted to make and realised that it could be a pretty difficult thing to get the tone right on. I'm sure some of the difficulty is because I don't share some of VES's views, and I'm also not saying that I don't think VES could have done a better job of promoting a more 'unified' response, but I do think that this is a difficult topic to write about which leaves me trying to give VES more leeway.

    I thought posts like Tired Sam's response with "The rest of the blog is just preachy nonsense. Can't be arsed with any more of this one-woman ego trip." was a bit of a heated overreaction.

    I'm certainly not arguing against disagreeing with, or being critical of, each other or anyone else.

    I wonder if AfME is now more aware of the fact it's a bit incompetent, so if included in a shared project might it might be more willing to just go along with what others say, and not have much of a destructive influence? I don't know. I've not read the new parliamentary briefing document, but I know that there was some earlier shared document from all the groups where section did seem to have an unhelpful influence from AfME. Really, we want them just signing on to work others have done.

    edit 2: This discussion started just as I'd been thinking about how some of my own (imo justified) critical responses to people with power and authority have seemed to lead to more problems for patients instead of doing anything to help, and that has undoubtedly influenced my perspective.
     
    Last edited: Jan 23, 2019
  13. TiredSam

    TiredSam Committee Member

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    Yes, I got that. I explained my words in a subsequent post too. Doesn't make any difference if someone decides to take your words and trumpet them about as a distraction.
     
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  14. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Valerie Eliot Smith has responded to my questions. Since this is all open access on her blog and the subject is meant to be debated within the ME community, I assume it is ok to repost her response here:
     
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  15. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    I have responded with the following brief comment:
     
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  16. NelliePledge

    NelliePledge Moderator Staff Member

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    ME Association have now got a press person albeit I think he is part time I think it’s about a year since he was appointed and I had assumed that at least some of the personal stories coming through in the press are down to his work.

    ETA John Siddle is the MEAssociation PR Manager
     
    Last edited: Jan 24, 2019
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  17. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    I'm against the idea, principle or strategy of needing a group of people to show perfect innocence in relation to their justified demands to be treated the same as another group of people. For two reasons.

    1. There is no such thing as the perfect innocence of a group.
    2. It doesn't work.
    I also note that even when perfectly innocent members of a group are harmed, one of the first tactics of crisis management PR is to apply the crimes, (real or imagined or metaphorical) of the group they are perceived as belong to, back on the individual.

    For basic evidence of this well known tactic, refer to the early unsourced or anonymous statements that appear in the media after a death in custody or encounter with police. This crisis management PR tactic is used often for the simple reason that appeals to prejudice work well enough to have the intended effect. Note also how the media fall for this tactic every time.

    I also question how effective appeals to rationality are in combatting prejudice. In my personal experience, in life generally and activism specifically, appeals to rationality are much less effective than the personal cost of being seen to be prejudiced when no longer socially acceptable. I believe this is the case because the prejudice is not a rational thing in the first place.

    Do groups that are traditionally scapegoated suffer less when they have better PR? Maybe, but how much? I've not noticed it much in the newspapers or media that I see.

    The Jews, the Muslims, the Asians, the Africans, the Blacks, the Roma, the Gypsies, the Travellers, the Poor, the Beggars, the Drug Addicts, the Single Mothers, the Feminists, the Scroungers, the Artists, the Pointy Headed Intellectuals, the Do-Gooders, the Human Rights Lawyers, the Defence Lawyers, the Disabled, the LGBTer's, the Moral Relativists, the Climate Change Alarmists, etc, etc, are all queuing up to destroy Me and My Way of Life if I was to believe the Press. Some have better PR than others. Some have very clever people and lots of resources too.
     
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  18. NelliePledge

    NelliePledge Moderator Staff Member

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    I know you put etc @Luther Blissett but fat people really should be on your list ETA speaking as a fat person
     
    Last edited: Jan 24, 2019
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  19. TiredSam

    TiredSam Committee Member

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    Even "experts" have been on that list.
     
  20. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    Just sharing a comment that @dave30th posted on another thread which is relevant to this thread:
    (https://www.s4me.info/threads/trial...t-an-upcoming-article.7944/page-7#post-140818)

    Further to my previous post, I would add that I am also very grateful to @Valerie Eliot Smith for all the positive work she has done, even if I do not agree with the way she has chosen to present some things. I also sincerely hope that she didn’t interpret anything I wrote as questioning her integrity, motivation or professional competence. That was certainly not my intention.

    As someone who has exposed myself to public scrutiny by writing about my personal experience of being unwell, as well as about ME/CFS in general, I am also acutely aware of how hurtful some criticism can be, and I would be very concerned if I was guilty of any insensitivity to other patients’ feelings in any of my comments.

    For my part, I’ve always found S4ME to be an excellent environment in which to debate issues, and particularly useful for testing ideas and getting feedback on things I’ve drafted, prior to publication.
     

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