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Simon Wessely wins prize for "Standing Up For Science."

Discussion in 'General ME/CFS News' started by urbantravels, Nov 6, 2012.

  1. In Vitro Infidelium

    In Vitro Infidelium Guest

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    The only 'rules' that I consider are relevant are the pragmatic limitations of what can or can not work. What concerns me about these discussions isthe lack of reference to how things work in the world as it is. I know there's a belief by some people that somehow AIDS advocacy is relevant model - but I've made plenty of arguments about why that is misguided. I've seen no convincing responses that demonstrate any effective equivalence between the advocacy opportunities and available resources of HIV sufferers and their supporters (a key issue) at any time in the past 30 years, and M.E/CFS patients currently.

    But what is that you (we) want to 'get done' ? And why should merely going to an MP be a source of achieving an end. Very few MPs are searching for cause to take up - most will already be burdened with the competing demands of a modern society as expressed by their 70,000 plus constituents. If you want an MP to do something - you have to have a strategy to which the MP can lend support.

    If you take Parliament ( I would favour Parliament rather than the Government' as the appropriate target) out of the equation - then who/what is there to address - the media ? For the media you need either a major financial issue, multiple prejudices (race/gender/religion etc) children, mass suffering - large numbers of deaths, horrible wounds, or sex, or ideally all of these put together. M.E/CFS can not deliver these in the concentration that grabs the media's attention. So if not the politicians, and not the media - then who ?

    I certainly do not suggest 'we' say nothing - what I do suggest is that whatever is said, is delivered in ways that command ongoing credibility. My argument is not that we be concerned about 'not upsetting' someone, but that we be concerned that if someone(s) is upset by some aspect of M.E/CFS advocacy, that upset is clearly understood to either be of value to the 'command of ongoing credibility', or that is highly likely to be neutral to the 'command of ongoing credibility'. If I were to put it in very simplistic terms, relative to 'upset' - I'd say I was more concerned to 'make friends' than about the avoidance of making enemies - but the two frequently go hand in hand. People who are seen to make enemies tend only to be attractive to other enemy makers. And if wha we want is to for M.E/CFS to 'be taken seriously' -then M.E/CFS advocates have to be seen as 'serious' in terms approved of by the audiences we deem necessary to impress.

    In terms of 'a route' - at this stage I see no value in re-inventing the wheel, or even building new wheeels, and where theyexist I'd see support for, and work within existing M.E/CFS advocacy organisations as being the only practicable route available. I understand that many people post on the forums, precisely because they find the established organisations unconducive to making progress in appropriate directions, however my view is that progress can only be achievd through co-operative action, so one way or another - 'getting organised' - means having an organisation, within which one necessarily forgoes a certain individuallity.

    IVI
  2. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Which has what to do with M.E/CFS ? Even ignoring the multiple negatives of associating M.E/CFS with the crap science of XMRV - really a demo ? Where are we 1968 ? If we contend that M.E/CFS is profoundly impairing - even an image of someone lying down on the pavement raises questions of how they got there and why if they are 'so ill' they are not home in bed. The relevant answers are not the ones that satisfy us - it's those satisfy the audience. To not recognise there is a profound inconsistency in 'active' campaigning and the illness status of the campaigners is to fail to grasp the secpticism of the audience.

    IVI
  3. alex3619

    alex3619 Senior Member

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    IVI I do not and have not proposed sending a few emotive letters to politicians. This is misconstruing my position. You can't reach politicians who are not already receptive to information that way.

    Ten letters or ten marching in protest is from cranks. Ten thousand is a campaign. Ten millions is imminent action by government. Politicans can't ignore numbers. Numbers can't be achieved through reason by itself, emotional factors and careful rhetoric are required, at least. You don't directly influence politicians. You influence everything around them. You make sure their party knows the issues, their opponents, the media etc. You make the campaign so in their face they can't ignore it. How about 20,000 tweets per day? How about 50,000 plus emails plus letters to the media?

    There are also ways to show that the science is already discredited that have not been tried. The medical institutions are intrinsically resistant to outside influence. Any campaign has to take that into account. Again, these are the focus of my blogs next year. I have a long term strategy, and year by year it will change.

    So far this has never happened in ME and CFS due to the low numbers engaged in advocacy and the poor health of most of those. That doesn't mean it can't be done. There are lots of strategies that might be used that we have never tried. Next year I hope to blog about some of them. I assert again that its a huge mistake to treat such political issues as though they were amenable to reason. That typically fails, and has clearly failed so far - there is every reason to suspect they will continue to fail as well. We have tried reason for around two decades. Reason presumes people are reasonable. Some are, too many aren't. The systems in government and associated institutions are set up to stop that, to preserve the status quo. I suspect this is even more the case in the UK than it is here in Australia.

    There are strategies being developed to deal with issues related to the kind of stonewalling we face, though not being developed by ME advocates so much as political analysts. I will be blogging on those too. In the meantime I am continuing with my investigation of political issues, including methods used in political rhetoric.

    This is NOT a public relations issue. Its a political campaign or we go nowhere. Without such political methods we are entirely dependent on the science. The science might deliver in a few years, or decades too late for me and many others. I don't think we can just sit back and wait for the research to deliver a cure.

    Bye, Alex
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  4. Stukindawski

    Stukindawski

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    The 'wincing' effect is what I imagine IVI has at the forefront of their mind. The vanity/fear of disablement in your average individual would rather consider everything that isn't blatantly unbeatable (i.e the physical loss of a limb - since you can't simply regrow one) as something that can be overcome.

    Of course, some people just aren't that sympathetic, and in their case, anything will miss the mark.

    @ IVI, Mortality in ME/CFS has become quite the popular advocacy tool of late. That and the most severe patients on tubes, stuff like that. Do you have any thoughts on this kind of advocacy?

    'This could be me next' is another possible juxtaposition for ME patients involved in advocacy.

    Criticism is obviously the large feature of your posting and it seems to engender a little...disapproval I don't think that means you necessarily have to provide answers, but it might be positive to let others know that you're trying to inspire better answers via your criticisms. I think you sometimes become the 'Wessely' of the patient community by accident from what I have read.

    I have actually seen you commend some advocacy, so I know it's not actually all doom and gloom.
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  5. In Vitro Infidelium

    In Vitro Infidelium Guest

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    M.E/CFS advocacy is not comparable to the restitutional campaigns re: asbestos and nuclear testing. There a material settlement was appropriate for discrete groups of people who were uniquely exposed in historic circumstances. M.E/CFS is (or should be) of continuing societal concern - until there is a cure, people (not in anyway discretely) will continue to get ill, the desirable settlement therefore is a societal one - that management, treatment and cure of M.E/CFS is a whole society benefit, not just a matter of fairness and justice affecting a particularly harmed group.

    IVI
  6. alex3619

    alex3619 Senior Member

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    Hi SilverbladeTE, at least the Norwegian government has apologized for how we are ignored. Thats a start. Bye, Alex
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  7. maryb

    maryb iherb code TAK122

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    Alex I look forward to your ideas for next year. You're so right it really is time we came together in the tens of thousands to make our point.
    alex3619 likes this.
  8. Quilp

    Quilp Senior Member

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    Hello Stukindawski, having read the contributions on this thread, IVI has gone to some length to articulate his position on the subject matter.
    Even allowing for the context in which the 'Wessely' was made, I think your post is very disappointing.

  9. Quilp

    Quilp Senior Member

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    Hello Alex, excellent post

    Those 20,000 tweets, and the 50,000 emails - how do you anticipate those numbers acquiescing in a co-ordinated manner ?

    Look forward to reading your blogs
  10. Stukindawski

    Stukindawski

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    I think maybe you missed my point, I'm not entirely sure what you're disappointed about. The position of critic doesn't have any negative connotations beyond those that are assumed by the reader.

    As far as your choice of quotation, it isn't really a fleshed out suggestion, it is conceptual. Again there's nothing wrong with that. But in IVI's own view the issue of advocacy is more complex and IVI's ability to delineate the problems with advocacy as opposed to its successes are much, much clearer and far more substantial.

    I think that 'Public Relations' or 'media management' has never been so powerful and influential on the way the general public digests information. Successes advocacy projects have achieved in the past now inform the advocacy management of today. Given the limitations of ME patients which IVI points out, effectively matching modern advances in PR, if not revolutionising them to ME/CFS patients' advantage, is perhaps the task ahead.

    Finally, I have read a lot more than I have posted in ME communities. My comment is informed by a lot of reading and not just this thread. I would ask IVI just how much IVI (I'm terrible at with referring to someone without a gender distinction) has been cast as the villain in the course of community participation. The analogy is a lot more apt than perhaps you realise.


    Back where the thread was going:

    Has a 'Wall of Webcams' type protest ever been considered? This would require obviously a lot of participation, social media, and maybe something in the press. Protesting at home by leaving one's webcam on for a day sat at home, maybe with some kind of placard, might have some effect. It's tricky because you're not obstructing in the traditional way protesters generally do.
  11. alex3619

    alex3619 Senior Member

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    Hi Quilp, really coordinating those tweets might be impossible. Way too many. Its more a case that we analyze the issues, develop a strategy, create a number of draft tweets for people to use or modify; then put out a call to have them sent. This means we need either a central or coordinated series of websites that can distribute the call. If we can get 4000 tweeters who send 5 tweets a day, then thats 20,000 tweets. Its going to be a lot like the competitions though. Numbers will fluctuate, people will forget, not everyone will be interested etc. In fact the best people to run this would be the people who have experience at organizing responses to the competitions.

    Tweeting was just one example. A single strategy in a political campaign is a bad idea. We need a range of measures, which means lots of suggestions, analysis and then responses. I don't think we are focussed enough just yet, though that could be because I am not focussed enough so don't see it ... I just woke up too which doesn't help.

    As I see it measures like tweeting have maximum impact after a strategy is in play and we want to increase its effect.

    What I want to see is more discussion about strategy. In particular purely negative discussion gets nowhere. People will not engage, nor respond and its largely a waste of time. What is needed is discussion of how to achieve things. If five like minded people get together, start a small project, and then advertise it, others will come on board. I see this as starting as small organic groups, responding to what they see as the need, setting something up, and then inviting others to join. We will never get everyone on the same page for advocacy. Thats a pipe dream. What we can do is provide something to give advocacy direction, or a hundred such things, and then ask people to join. Obviously only one or two projects can use the kind of mass communication required in the tweeting strategy at the same time.

    I just joined another small project today. It wont involve a lot of time, but its worth me looking into it to see if its feasible and can get somewhere. This project is not on PR, and I do not feel at liberty to discuss it just yet, its way too early.

    Maybe we need an advocates thinking outside the box thread for ideas?

    Bye, Alex

    PS There are anti-spamming laws in many countries. This needs to be considered.
  12. In Vitro Infidelium

    In Vitro Infidelium Guest

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    But how (from the recipient's perspective) does that not equal spam ? I'm afraid I don't recognise (at least in the UK context) the notion of informing a political Party, as something separate from contacting either the Government of the day or those in political oposition to the Government of the day. It is possible, via individual Party activists, to get specfic issues advanced within the policy making procsses of a specific Party. I believe the Labour Party in the 1990s actually had something re:M.E on a Conference resolution. But these are very tenuous (and attenuated processes) they are fine for 'big issues' but once left to the ambit of the politicians, small and difficult issues get lost unless they have an enthusiast sponsor(s) within the parliamentry process. You are not going to get any of those by jamming up their 'in boxes' with tweets and emails.

    Besides - most institutional recipients have responsive spam handling so anything with a common title line or keyword will get canned after about the first 50 mails or even less. For politicians communications from non constituents will get short shrift and at best will get a standard reply, unless thre is something relevant to the particular politicians, particular interests.

    What is the basis for the claim of 'failure' ? what is that could at any time in the last 20 years have been achieved by some different form of communication ? There is a harsh truth, and that is that in all probabilty, no amount of political sympathy would have seen an advance in the science of M.E/CFS, nor any consequent improvement in the socil support provided to M.E/CFS patients. The 'x' hasn't worked so we must try 'y' notion is a fallacious proposition - what is needed 'now' is strategy relevant to 'now', irrespective of what has gone before. If appeals to emotionalism are to be part of any strategy, then the ramifications of such an appeal need to be considered in terms of what that means for the future depiction of M.E/CFS.
    What is the difference between a political campaign and public relations ? They are funadamentally the same thing - it is an issue of credibility and authority, and the benefits that come to the customer/voter/supporter by buying into the claims of the entity -be it political party, corporation or special interest group. Emotionalism can certainly affirm credibility and authority - (Kennedy, Blair, Hitler ), but it certainly does not assure long term success, and invariably is dependent upon a certain degree of tribalism. How big a tribe can we be - and if we are going to be a tribe - will we be Israeli or Palestinian ? Who will hate us, who will love us ? How many who actually have M.E/CFS will 'belong' - how many will be outsiders ?

    An effective advocacy strategy does not separate political from commercial or from philanthropic or from moral considerations - it requires a whole breadth of consideration, and the actvities carried out in one sphere have to be factored into those carried out in other spheres. Credibility and authority are the key components - achieving these qualities, and maintaining them in the perspective of the audience is the route to 'success' -especially when the campaign is necessirly one pursued over many years.

    IVI
  13. alex3619

    alex3619 Senior Member

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    Thank you for the emotive spam image IVI. It seems you do get the point of emotive issues in political debate. :ninja:

    Its only SPAM if its set up as SPAM. Twitter doesn't have to be. If I said use emails then your arguments would apply. With twitter your arguments are only a minor easy to overcome detail. Similarly spamming regulations will probably not be a problem ... SPAM is about how things are done, and why they are done. If this were not the case then just about everything on twitter would be SPAM and it would all disappear in puff of legal indignation.

    Public relations is about improving image. I do not give a damn about improving image if it gets in the way of achieving results. Image is only relevant if its useful to advocacy. AIDS advocacy was considered highly offensive by many, yet it was effective. Yes, I know, CFS and ME advocacy is not AIDS advocacy, a point which I have made myself many times. Yet the principle still applies. Effectiveness and popularity are not the same thing.

    May I point out yet again that arguments of the type raised will not achieve any results in advocacy, but will be ignored by the vast majority of advocates. If you want action along the lines you vaguely suggest, you have to take action and then you will have something concrete to draw advocates attention to. I am proceeding to do so. One project has already started (and not initiated by me) and I will report on that when its time to do so. Others are being planned. Still others are being discussed ... darn, I am late for a meeting to discuss one of those. Stay tuned.

    Bye, Alex
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  14. SilverbladeTE

    SilverbladeTE Senior Member

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    It doesn't matter if an advert is good, or bad, or offensive, it only matters if it is REMEMBERED ;)

    Squeaky wheel gets the grease!
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  15. In Vitro Infidelium

    In Vitro Infidelium Guest

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    The problem with that is, it is only part of the equation. If the association with the advert is wholly negative then associated rememberances are going to be a turn off, not a turn on. Controversialism certainly has a role in advertising - Benneton played this extremely well for a number of years (although it has a time expired effect !) but one has to understand that the target customers were seen as likely to be excited by the controversy (i.e turned on) while the objectors (the turned off) were never expected to 'buy' in any case. The trick was getting the non purchasers to do the work for the brand - very clever and very, very difficult to achieve, let alone maintain over time.

    If we are swapping aphorisms, I'd include the political nostrum: " A good photo can't win you an election, but a bad one can lose you an election" (c.f Kenndy/Nixon 1960 TV appearance). Negative images have greater endurance in human memory than positive ones - it's vey easy to get people's attention - that doesn't mean they are going to be well disposed toward you, nor that they are going to remember you with affection or accorded credibility.

    IVI
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  16. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Apologies if this Written Answer has already been posted or posted in another thread.

    What possible response did the COM anticipate other than the Written Answer she has received?

    The call by Kevin Short (who advocates and publishes under the name of http://www.angliameaction.org.uk/ )
    for raising questions on this issue in either House and for the contacting of MPs with a view to interesting MPs in this issue was, in my opinion, misguided.



    http://www.theyworkforyou.com/wrans/?id=2012-11-19a.306.6&s=myalgic encephalomyelitis#g306.7

    Written Answers 19 November 2012

    Chronic Fatigue Syndrome and Myalgic Encephalomyelitis

    House of Lords

    The Countess of Mar (Crossbench)

    To ask Her Majesty's Government what is their policy on police protection for medical researchers working on chronic fatigue syndrome and myalgic encephalomyelitis.



    Lord Taylor of Holbeach (Whip, House of Lords; Conservative)

    Criminal, violent or threatening behaviour towards anyone, including medical researchers, is not acceptable. Where there is a threat to individuals involved in medical research, it is a matter for the police to investigate and take the relevant action.
  17. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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  18. Enid

    Enid Senior Member

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    That seems clear enough but can we have more details of the criminal, violent or threatening behaviour investigated by the police and any action needed to be taken from those who constantly remind all of their abuse.

    Suzy @ 256
  19. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Who do you think is going to provide you with details of any police complaints and any resulting investigations, Enid?
  20. Enid

    Enid Senior Member

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    None of course - but the question remains - proof (and details) are required rather than sweeping statements and implicating all ME/CFS sufferers.

    It is surprising how often rudeness, "suggestions" about quite where someone can take themselves, even "threats" appear in the press. No-one has the slightest intention of carrying out violence.

    (I did have to raise my voice once to docs/psyches in A & E trying their best to persuade me - just all in your mind. Justified anger it turned out from MRI brain scan abnormalities amongst many others)

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