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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. NelliePledge

    NelliePledge Moderator

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    @Sly Saint its still worth discussing the charity/organisation aspect though. I don’t object to a merger as long as the new organisation is properly constituted to represent members by having voting rights and set up so the majority of trustees must be people with a diagnosis of ME/CFS. The organisation would have to use ways of working that enable participation of people with ME. Part of its constitution would be to act as a role model on engaging people with ME. I think #MEAction has some more up to date practices that would be a good starting point. ME Association has the knowledge around being a charity with voting rights.

    ETA I think there are examples in the UK where disabled people have overturned the paternalistic approach of charities supposedly speaking for them. Didn’t this happen with ME Association. But I think predecessors to Disability Rights UK too which is a much bigger organisation.
     
    Last edited: Jan 14, 2019
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  2. chrisb

    chrisb Senior Member (Voting Rights)

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    Does anyone feel a need to recover their integrity? Does anyone feel it lost, or in any way compromised? Certainly we, or certainly I, say some unpleasant things about the views of certain doctors and the cabals in which such views persist, but does that in itself compromise one's integrity?

    I'm not sure this has been thought through. Any adverse comments and we are thought to be creating division. Acceptance leads to, well..acceptance.
     
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  3. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    I concur.

    The puppet master of the BPS media campaign wanted to play up the threats and what better way than to produce an over the top 'kill' video?

    Brilliant piece of media / social / political manipulation.
     
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  4. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    My issue with the video (& possibly other evidence)is this-

    1- if someone wanted to discredit a group of people who were opposed to them, then making a video purporting to be from them is an excellent way to do it. Especially, if you're not going to go the whole hog and insist on a full investigation and pressing charges. I am certainly not saying that is what happened, I am just raising the possibility.

    2- if someone wanted to make a threat and get away with it and they are aware of other people/groups that were strongly opposed to their target, wouldn't claiming they were representing some other group be a good way to muddy the waters and draw suspicion away from themselves?

    3- by not doing a thorough and complete investigation, by not getting the case to court and pressing charges the ME community, hosts of housebound and bedridden people, have had their reputation tarnished and suffered as a result. I am sure such a video would cause distress to the recipient, however it has also tainted the lives of hundreds of thousands of entirely innocent and ill people. I would argue that in not perusing this incident it is ME patients who have been severely harmed.

    I am happy to state that I am not a violent activist (I can barely wield a toothbrush, for goodness sake), but I am not apologising for something I didn't do and that caused me considerable harm.

    As to the rest of the blog.....yep, that made sense and I agree we aren't even in the argument. It may amuse us and Michael Sharpe to engage on twitter, but meanwhile the harm continues and IAPT rolls on.
     
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  5. strategist

    strategist Senior Member (Voting Rights)

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    We can change the narrative by telling different stories than the ones the press likes to tell.

    Most stories about ME/CFS can be classified as:

    Experts say CBT/GET works.
    Death threats by militants
    Science proves it's a real condition (about twice a year).
    Weird and unlikely story about patient overcoming ME with some trick (pole dancing, fruit & veggie juices, etc).
    It's all in your mind.

    There are other stories that can be told:

    Patients expose PACE as junk science.
    The hidden health crisis of ME/CFS.
    Doctors helping patients deal with severe ME/CFS.

    Unrest did a good job telling a different story.
     
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  6. chrisb

    chrisb Senior Member (Voting Rights)

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    The "Zinoviev letter" comes to mind. Could suppresion of information about the video be due to suspicions, after proper investigation, as to its provenance.
     
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  7. strategist

    strategist Senior Member (Voting Rights)

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    I remember that once in the comments section of science based medicine article there was psychology student claiming that she had seen routine harassment / death threats on social media. She provided a screenshot as evidence, but the user interfance suggested that the person making the screenshot was the same as the person that had written the threat.
     
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  8. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I this what VES is saying is that we can do that until we have no breath left in our bodies, but if nobody with true power to effect change is listening.....and they aren't because of the messenger rather than the message.

    In other words, it's not just our message that's the issue. It's us. We have no credibility within the UK establishment.
     
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  9. Andy

    Andy Committee Member & Outreach

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    Is it just me or does this analysis of the media message situation come across as if it was written a couple of years ago? Or am I just being naively optimistic in thinking that the situation nowadays has improved since then?
     
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  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    The problem is, most often what happens is the only things that get reported from the ME community tend to be reactive to something put out by the BPS group, and even then they [BPS] nearly always 'have the last word'.

    Apart from the odd 'human interest' article, trying to get the media to report on the real issues is almost impossible.
     
    Last edited: Jan 14, 2019
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  11. Esther12

    Esther12 Senior Member (Voting Rights)

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    @ScottTriGuy

    That seems unlikely to me. There have been misrepresentations from them in the past, but they've generally not put a lot of time and effort into it.

    I think that any implication of fabrication is likely to be used against us and presented as evidence of an unhinged conspiratorial mentality... but this is complicated. It seems Crawley has lied about the Times 'harassment' cover being a threatening e-mail that she had received, and there was an example someone posted of an anonymous commentator seeming to have fabricated a patient call to send threats to Wessely (under the Science Based Medicine PACE blog - just found the link). I think it's best to be cautious about these things.

    Any unfounded speculation about anyone connected to the BPS crew making up examples of abuse could be quoted by a journalist looking to make patients seem unreasonable. This is an area where it's vitally important that we stay cautious and grounded in the evidence with the claims and suggestions we make. Even with the Crawley case, where the evidence appears to be pretty clear-cut, I feel hesitant about mentioning it just in case there's been some bizarre series of co-incidences and misunderstandings.

    There are going to be nasty, unpleasant and stupid people who get ME/CFS, just as there are people who get any other condition. A computer game developer got death threats for not including butterflies in their computer game - I'm sure that some patients will have behaved in an abusive way towards those like Wessely.

    I do see some stupid things posted on twitter. It's easy to imagine people like that sending abusive e-mails and imagining that they were engaging in useful advocacy.

    Any time there's an attempt to challenge abuses of power, there will be people supportive of the movement who behave badly or unreasonably. It's not practical for everyone else to then spend their time investigating every possible instance of this and condemning those individuals deserving of condemnation. We've got too many other important things to do. I'm sure that there are thousands of ME/CFS patients who have posted a misguided message somewhere on the internet at some point in their lives. It's much more important to investigate the misguided claims and actions being made by authority figures, and condemn them when they deserve condemnation. The different levels of power and authority different people have should affect our commitment to challenging their bad behaviour.

    She didn't say 'apologise', but 'condemn' - 'apologise' would annoy me. I do feel like VES's piece rather side steps the fact that almost no-one seems to have seen the video she described, or any other evidence of death-threats, so it's difficult to see how any united statement about it could be made.

    When these stories were being promoted Charles Shepherd was making lots of condemning statements to the media. I understand why he did so, and I'm supportive of condemning any individual patients who are behaving badly, but as a media strategy I got the impression it may have been unhelpful - seeming to validate widespread coverage of the bad behaviour of a few individuals on the internet that was then used to smear and promote prejudices against a wide group of patients concerned about the quality of work coming from Wessely and his colleagues, and the ways in which their lives were being made worse by it. Maybe it would have been better to only speak about specific individuals? I feel like that vaguer the accusations are the more they feed in to prejudice and stigma.

    There was a clear strategy to conflate any abuse PACE/etc receive with legitimate complaints about their work. They had positions of authority they could use to do this, and I don't think that any plausible actions by patients would have been able to prevent this smear campaign when it was at its peak.

    Also, I think it's worth recognising that the poor impression many journalists have of ME/CFS patients is influenced by the fact that the UK media has spent much of the last decade promoting misinformation and prejudice. That's inevitably going to lead to animosity. I'm sure that some patients will have responded to this in stupid and counter-productive ways, but that's not something advocates are going to be able to control. It's just random people who are falling ill and then being justifiable outraged by the crap work a lot of journalists do - that's always going to lead to some problematic responses.

    Also, we have things like the recent Kate Kelland piece: https://uk.reuters.com/article/us-h...mid-patient-activist-complaints-idUKKCN1MR2PI When we have people conflating Courtney's careful and reasonable complaints (the substance of which were entirely ignored) with activists over-riding scientific evidence with unreasonable behaviour then this will encourage the very worst behaviour. There will always be propagandists in the media who are happy to stigmatise minority groups.

    My rule of thumb for effective advocacy is: if it feels good, it's probably not useful. If it feels like a boring chore, you might be doing something helpful.

    I largely agree with that.

    I would also say that if you see a patient behaving in a way that could be unhelpful then it's worth letting them know. Some people are really clueless. I also think that a lot of patients can think expressing their pain and anger about their mistreatment will persuade others to take the problems around ME/CFS more seriously, and I get the impression that this is not right. It is shitty that lot of people who fall ill and lose so much in their lives really need to also quite rapidly learn that they are now part of a stigmatised minority group that needs to be very careful and cautious in order to be taken seriously.

    I'd have thought the same other than that recent Kelland piece, which seemed to take us years back and completely ignore all of the substantive problems with Larun's work, PACE, etc, as well as presenting Blakemore as an independent expert despite him having led the MRC when they funded PACE, and the MRC now relying on Larun's work to evade criticisms of their decision to fund PACE.

    Hopefully that was just a blip. I does seem like we've made progress more generally.
     
    Last edited: Mar 15, 2019
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  12. alex3619

    alex3619 Senior Member (Voting Rights)

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    I think any such organisation would be a mistake, if its aimed at media advice. I was looking deeply into this six years ago before my big crash. Doh, seven years ago.

    My original idea was to have an independent organisation for research and reports, accessible to the media. Its not about patients. Its about media. Now an existing charity, or an amalgamation of charities, might host it, but in its day to day running it needs to be independent. This might start in one country, but the information it hosts would eventually have sections for all countries in which one or more charity groups are participating. Even something like this forum could be a participant. What cannot be partisan is the control of information, it needs to be as independent as possible. Unlike the SMC.
     
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  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    not what I was suggesting
     
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  14. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    I wasn’t expecting that tbh. As someone whos been very involved following the scene I knew nothing about a video for wessely although there was general threat talk, and that was a long time ago .


    Ofcourse none of us excuse that but in the modern world this unfortunately isn’t unusual in controversial areas, although obviously in health there’s not usually the situation of ME so it’s not common, MPs report abuse and death threats regularly over any issue, brexit has seen a murder and multiple intimidation’s but no one holds all brexiteers responsible in the way our community is supposed to walk on egg shells or do no activism because of the odd extreme or deranged person we all disassociate ourselves from.


    The SMC went to town on the harassment thing but not just out of moral outrage but exploiting it to maintain the BPS power and keep CFS stigmatized and abandoned. It’s dragged up by Esther Crawley and wessely subsequently to silence all criticism and maintain their position, that seems clear.


    I’m more concerned with advocating for those in our community struggling to survive than endlessly apologising to poor Sir, Lord, esteemed, happy, wealthy, Simon Wessley and chums and I have never seen anyone condone the threats but we have our lives and a zillion issues to focus on. I’m not sure I agree with the focus of this blog. I’ve not seen any reports of recent harassment either although I’ve seen Michael sharpe try to claim abuse from perfectly fine tweets, so I think that issue, by others is more dredged up than the hot potato.

    I agree with the comments we have to set the agenda now, not just respond on their terms on the back foot.( If anyone watched the brexit film recently with benedict cumberbwtch there were bits I related too. ) To me the harassment stuff has been done to death and is old news used to block out new news on research, increasing global recognition, the injustice for patients and that fact that actually patients were right.

    I do agree that we are loosing the PR war, mainlybecause of the SMC and the way our media work. It’s disheartening to see how our reputation has been thoroughly trashed, that’s twenty years of BPS narrative and manipulation for you. How to undo that is an important question and discussion but I’m not sure ves has honed in on the central issue.
     
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  15. rvallee

    rvallee Senior Member (Voting Rights)

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    That's why I don't believe any of it. I believe there was a lot of criticism and possibly some harsh words made out of desperation, they are effectively destroying our lives after all, anger is very much justified. But if there were real evidence of threats it wouldn't be hush. That video with high production value and editing seems suspiciously not the product of a person with ME and possibly as fake as the mock-up used by Crawley. When the truth is bad enough, you don't need to fabricate anything and they had the opportunity to show evidence at the PACE data trial and admitted it was all made up.

    We are a disparate population linked by no other factor than this disease, from all over the world and mostly unable to even take care of ourselves. We may as well be a random cross-section of the human population FFS, there is no guilt by association to be had here. At best we have a few charities as representatives, some of them doing a lousy job at it. Their credibility is already stretched very thin by claims that we are some super-organized militant lobby. This is laughable on its face, they may as well be screaming wolf at a toddler army ransacking entire nations and feasting on their victims' brains.

    And we are well acquainted with the horrible attitude and condescension of some of the BPS group, especially Sharpe who is unpleasant and insulting in general. They most likely have had their fair share of complaints and criticism by offended patients of all types. It's a well-known complaint with medical professionals that they face abuse, inevitable since they interact with the whole human population and as such will interact with the worst of society. We are not responsible for the bad behavior of random people anymore than we are collectively guilty of Hitler's crimes just because we also happen to breath oxygen.
     
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  16. strategist

    strategist Senior Member (Voting Rights)

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    This is why I'm skeptical about the death threats claims. They had a golden opportunity and a team of lawyers to present any evidence of such death threats. They were not able to present anything.

    I don't think there were any serious death threats. Even there had been, it's irrelevant. It doesn't change the quality of PACE and so on. The people criticising PACE are not the ones that would make death threats. The purpose of this narrative is just to distract from serious problems with their work and claim victimhood when they are inflicting harm on patients.
     
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  17. Lucibee

    Lucibee Senior Member (Voting Rights)

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    *Godwin klaxon*
     
  18. Esther12

    Esther12 Senior Member (Voting Rights)

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    I don't know if that "couldn't" is necessarily right. It could be that they just messed up by assuming that the Tribunal would simply trust these authority figures claiming that releasing PACE trial data showing they'd spun their results would put the lives of innocent patients at risk. We can't know what was going on in their minds.
     
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  19. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    I can see a merger of AFME and mea and meruk , I think it would be better and they do roughly follow the same direction on things since the PACE awfulness. Unfortunately AFMEs past makes me think MEA would want to keep separate, I think it’s fair to say the dr shepherd association wants to remain that also and the chance of Iime and mea collaborating is zero I think.

    I have suggested in the past Iime when they were more powerful , 25% and tymes collaborating in a similarly complementary fashion but it didn’t happen and that ships sailed.

    Forward ME seems to be the unifying group but is quite conservative in approach, inching forward would not be an inappropriate name and I’m a bit amazed that all the different groups attending that don’t make some think” hec we a fragmented bunch aren’t we” but sometimes being able to quote friends and allies also puffs up your position a bit , “look all these people support us” etc “our group of all these members think this, versus just Iime” for example too. Forward ME do tend to react too , so whilst they do sometimes take the initiative to loook into things it’s often “this issue has arisen so we had a discussion on it” which isn’t really the forum to set about getting together to revolutionise our image.

    Re the validity of the video, couldn’t they trace who uploaded it or is that a simplified assumption?
     
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  20. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I should remember but don’t: can anyone tell what the true story was [re: cut off balls] or direct me to the info. Thanks.
     
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