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Why few dare tackle the psychology of ME

Discussion in 'General ME/CFS News' started by Firestormm, Sep 24, 2012.

  1. Bob

    Bob

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    At the risk of being repetitive... I couldn't disagree more strongly with you, Firestormm... You are blaming patients for a problem that is not of our making... You are buying into the media propaganda.

    A public comments section is purely that... It invites all types in, and they do not reflect on a community... A comments section in a newspaper cannot define a medical condition... Surely, any thinking person (even Telegraph readers) should be able to work this out for themselves!
    Nielk and natasa778 like this.
  2. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Can we dispose of any notion of 'towing (or toeing) any line'; the question (at least as I've tried to address it) is about effective presentation of what in aggregated terms (i.e the total actions and communications ) contributes to a desirable (here insert better public perception, increased research etc) advocacy of M.E/CFS. We are all clearly free to write what ever we want, limited only be legal restraint and local site admin, anywhere on the Internet. My argument is about effect - that is I consider that certain actions/communications can have useful outcomes, and others 'less than useful'.

    Some of the arguments made in this thread seem either confused or otherwise disingenuous, or denying of the reality of what effective advocacy requires, or the nature of the world in which advocacy takes place. What I find most disappointing is the apparent unwillngness to acknowledge that if we act collectively, or are perceived by others as athough we are acting collectively, that constitutes something that will be received by the audience (be that a local or a global audience) as an attempt at advocacy. My argument is that in such circumstances we should at least consider what effects that may have on what outcomes we would actually want, rather than merely 'shouting and see'. I've never argued that getting down and dirty is always inappropriate, but I do argue that actually considering the outcome is the smart thing to do before jumping into the brown water, and that there are times when it is way smarter to keep your feet dry (let alone your head).

    One of the worst fallacies to come out of the abysmal scientific and advocacy failure of XMRV ( a lesson in advocacy stupid - chasing events, hysterical responses and ultimate handing of amuminition to the psych Mullahs) is the recourse to the myths of AIDS campaigning. Even if one accepts the narrow perspective of certain activist organisations (which gloss out many grass roots initiatives as well as the role of academics, politicians and administrators who all contributed in quiet determination) AIDS advocacy had (and continues to have) a background support of people who are young and healthy, itself in turn supported by youth appealling public figures. Does anyone really believe M.E/CFS is ever going to attract the dance floor energy that would put a young Madonna at the heart of a pro M.E/CFS campaign, or find a place for a rock queen like Elton John ? M.E/CFS is an illness primarilly of 'later adulthood', for advocacy to have sustained impact, campaigning has to reflect that difficult fact, because otherwise it will not come across as genuine. Angry young men and women can be appealing - angry grey heads far less so.

    IVI
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  3. PhoenixDown

    PhoenixDown Senior Member

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    New & unknown illnesses were "held by the psyches" a long time before the Royal Free incident in the 50's. It's their game to pretend to understand the unknown, and in doing so they have held back progress, and I don't think it out weighs any good they've done, certainly not in these illnesses.
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  4. alex3619

    alex3619 Senior Member

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    Hi IVI, I have discussed at length elsewhere the issues of AIDS campaigning versus ME campaigning. There are indeed big differences. We cannot even match MS campaigning, and MS is a disease of older people too.

    I think carefully selecting response to target audience is valid for select audiences, what I question is its validity for general internet response. I am not sure there is a selective target audience in that case.

    Lack of healthy advocates is a big problem for us, as is many patient's perceptions that either nothing can be done, or enough is being done by authorities. Throw in the issues with maintaining a life if we are able, or being unable to use a computer, or being too sick to do much, and we have major issues with advocacy.

    Targeted scientific advocacy is being done, but we need more of it. The problem is that only a relatively small number of people do that. I hope to address this issue in detail by years end, there are plans in motion behind the scenes but they progress very very slowly and have very few working on them.

    Wider political advocacy is the debate in question. Its still not clear, to me, where that lies.

    I still assert the best way to stop negative mass posts is to give people an alternative. I have two plans to do that, but we need more. Can anyone come up with other options?

    Bye, Alex

    PS For example, how about a wiki guide to effective ME campaigning? With guest articles, general todos and general dontdos? We need more solutions, more strategy, not more discussion, though what many of us do best as either housebound or bedbound patients is discussion.
    Enid likes this.
  5. Enid

    Enid Senior Member

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    alex - I can only suggest the strategy used by ME friends in Norway (which as we know lead to acceptance, discovery of Rituximab and apologies from their government). It was three pronged purposely - the Gov, the Media, and the medical profession. Slow - OK but worked. Some of this is going on here in small numbers only. The Norwegian media (they had old links) I believe can be tough but science fed in (and many very sick people) eventually persuaded them against all the nay sayers - the psych lobby being the most strident "refusniks" and their voices more widely reported (and accepted in medicine) at that time.

    Anyway just a thought for strategy in your thoughts and plans.
    alex3619 likes this.
  6. alex3619

    alex3619 Senior Member

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    Hi Enid, I agree with the Norwegian strategy: science advocacy (this includes medical), political advocacy (which includes government), and media advocacy being a combination of the two. I have plans for science advocacy advances, on two avenues, but no guarantee they will ever happen. In part this is through my suggestion of a media centre, though a global advocacy centre is also being discussed from time to time. In addition there is a discussion of how to continue gaining medical and scientific support that probably will not be blogged or discussed publicly because its being done by people with appropriate backgrounds, not as a general public response. There were also several attempts to establish general advocacy that went nowhere. Its possible, its just not easy to do with low numbers of under-resourced people.

    In time some of these proposals will hopefully be written up and delivered to advocacy organizations (drafts of part of one or two exist and need more discussion before release). A subset of those might be presented to the wider advocacy audience, and one or two to the general public. These are issues that require some care and analysis, general ad hoc responses have so far not been successful given our limitations.

    Some of the advocacy organization intitiatives do appear to be getting some traction, its good to see the FDA are at least making the right noises although real progress has yet to happen.

    All this is separate to my book, though might feature in sections of my book. I have a planned blog on ME advocacy strategy, but its many blogs away and still a work in progress.

    Bye, Alex
    Enid likes this.
  7. biophile

    biophile Places I'd rather be.

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    @IVI. Sure, we can dispose notions of toeing the line. People however will disagree about what constitutes effective presentation/advocacy, how to achieve accurate representation, and what is good for the goals and reputations of the collective. I am certain that most people do consider the outcome to a large extent, before deciding whether to wet their feet or stay dry. There is nothing I disagree with in the first two of three paragraphs of your post, and I doubt many people would, but these same people would have major differences in how they perceive current advocacy or engage in their own.

    The main problem as I see it is that "our" starting point is a quagmire, and it is difficult to progress because "we" lack cohesion and advocation resources, and have reduced capacity due to illness. No one seems to know how and/or have access to the tools required to achieve obvious successes. A large proportion of people (perhaps most) even lack a firm diagnosis and probably have no idea there are many others like them. Many of us have been essentially displaced from our previous lives and from the rest of society despite still living in it. Others are disillusioned with the organizations and "community leaders". With the lack of resources I guess some would prefer to focus on precision rather than numbers, but I agree with alex3619's sentiment that numbers count even if the quality is mediocre.

    It is easier to criticize in hindsight. I was really never part of the XMRV momentum other than entertaining the possibility until it was accepted , but it is understandable why people did what they did under the circumstances even if it was subpar. Drawing inspiration from AIDS advocacy was bound to happen given the desperation and the possibility of being infected with a newly discovered retrovirus. We cannot all be highly intelligent, highly reasonable, highly cautious, highly articulate, highly clued in on what works and what does not, and fortunate enough to be correct in a gamble. The WPI became a beacon of hope to some of those in despair, and ended up disappointing everyone. I shake my head at the thought of all the millions of dollars spent on building that place.

    I am uncertain about celebrity advocates for ME/CFS. I guess it depends on the type of celebrity and whether their reputation matters or if they could get the point across well. ME/CFS is something which may actually bring down a celebrity's reputation rather than raising that of ME/CFS, or vice versa. Personally I have little idea what advocacy would be possible and effective given the situation. I do not really consider myself an "advocate" per se, I prefer to focus my limited capacity on analysis of the research, with sporadic attempts to weigh in based on that.
  8. biophile

    biophile Places I'd rather be.

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    4 Reasons We've Stopped Trusting the Media

    http://www.cracked.com/blog/4-reasons-weve-stopped-trusting-media

    #4. Maybe the Media's Simply Less Trustworthy Now?
    #3. Politics Has Ruined Everything
    #2. Less News, More Opinion
    #1. Nowadays, Everyone's a Critic

    How about, the "Daily Turkey"?

    [​IMG]

    OK, no worries. We cool, then?
  9. biophile

    biophile Places I'd rather be.

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  10. alex3619

    alex3619 Senior Member

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    Two more linked factors that adversely effect advocacy: memory/concentration and groups.

    I try to do too much. So do so many of us. At the same time I try to pace. Stuff slips off my radar all the time, my concentration gets shattered periodically, and my memory is shoddy. This is a huge issue, and means that advocacy has to be structured and planned in ways that healthy people never have to consider.

    The second issue is group advocacy. Effective advocacy requires a group approach to each issue, in my opinion. It was my experiences from the PACE case that taught me this (thank you Graham, Janelle, and everyone else who participated). Only a group can enable us to stay on track in the long term. Individual efforts, at least in my case, result in inconsistent advocacy. Yes, I can plan and manage things to be more effective, but there are limits. As the joke goes, if there are enough of us we add up to a real brain.

    Establishing small focussed task groups might be a way forward.

    Bye, Alex
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  11. Enid

    Enid Senior Member

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    I think he should stick to the day job - as a Doc and continue to listen to his patients. Leave any pretensions of any specialist medical knowledge behind him and repeat the adage "fools rush in ........". And I must say I'm deeply suspicious of "journalism" such as his in medicine.

    @ biophile 330.
  12. Bob

    Bob

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    Maybe I've missed it, but I don't think many people on this thread have really been talking about advocacy, until the last few posts.
    This thread is mainly about the newspaper blogs, and subsequent comments.

    I wouldn't describe placing a comment in a newspaper website, as 'advocacy', partly because it has no specific intended reader. (i.e. it's not directed at anyone.) I'd just call it 'discussion'. (And most of the posts are just 'chit-chat', not even 'discussion'.) (Although, in the wider sense of the word, I suppose posting comments on a news website is 'advocacy'.)

    I'm not sure what you are worrying about, IVI. If this was the only advocacy that went on in the ME patient community, then we would be in trouble. But obviously, it isn't.
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  13. alex3619

    alex3619 Senior Member

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  14. Enid

    Enid Senior Member

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    Alex @ 331 - I do agree that focussed groups may well be a way forward, even our 4 major charities cannot concentrate on one singe aspect or another trying to provide as they do a multitude of services for patient support. And they themselves are ME sufferers. Invest in ME have concentrated on research superbly and brought the major biomedical researchers to the UK for example.
  15. alex3619

    alex3619 Senior Member

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    Hi biophile, I bolded the first two sentences: they are an important point. Getting such resources established and updated have largely failed. Its not that advocacy does not happen; its that there is very little analysis and advocacy about advocacy. As I said before there have been a number of attempts to establsh such resources that I am aware of, and they have failed. In part I think this is because when these things happen, it is an individual who tries to get it going. It lacks a coherent group focus. Given our limitations that is a huge barrier before we even start. Bye, Alex
  16. Bob

    Bob

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    I've always thought it a good idea to set up a non-profit company, or a charity, in order to create press-releases. The media love press-releases. I thought I read somewhere recently that a group of patients is working towards this. The other thing that could be done is to write freelance stories, about ME patients etc. i.e. human interest stories.

    Ideally, we'd have a patient organisation heavily promoting the biomedical aspects of ME, in the media. But patient organisations could do so much more, such as setting up specialist clinics, and advocate for research into sub-sets, and advocate for the use of the ICC in research, etc, etc. Much of it is a question of resources, but the biggest patient charities haven't all been great at advocating for us.
  17. Bob

    Bob

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  18. Bob

    Bob

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  19. Enid

    Enid Senior Member

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    Oh great - thanks Bob. She's new, suffers from FM and by all accounts so good in her last position working with a high profile children's charity I believe. I'm just happy to see them responding - we need that along with others one hopes will or may have come from the experts here.
  20. Bob

    Bob

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    Yes, I agree. She's new. She'll take time to settle in.
    Even so, Action for ME should already be good at this sort of thing.
    They should have some ready-made responses, and should be able to deal with the media effectively.

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