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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. alex3619

    alex3619 Senior Member

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    On the first point, the conclusion for that seems to be never to bother with internet responses except on a site that is highly specialized, like PR, because we have no way of identifying an audience composition adequately. I don't think that is a valid idea. As you can never be sure of a target audience online, especially on something topical, it does not follow that you should not respond online. In addition, many will respond no matter what you or I or anyone else says. I very much doubt any claim to a well characterized audience online, from a mass media site, is going to be valid - it would be interesting to see research on this, but my guess is that the audience will be highly variable and it will depend in part on search engines and how they record the topic. HIghly specialized websites are of course an exception to this.

    On the second point, we do lack cohesive agendas in many comments, and from a pure PR perspective that might indeed present issues, but its not that simple. First, the nature of the community is such, that for the forseeable future, there is NOT going to be a single cohesive community. Thats one of the limitations we have to deal with. Wishing for it gets us nowhere.

    That is not to say things can't be done to increase community cohesion. Two of my pending projects are about this. One of the things that I think will fail abysmally is anyone telling the community they can't do this, or can't do that. Anyone taking that line is setting themselves up to fail.

    The next point is that single core values are a myth. Sure we can agree on very very general things. More research. Better medical treatment. A cure. After that we are fractured, for well documented historical reasons. My take on this is that any strategy proposed must work with a factured community, and not just wish things were better. We need to operate with existing limitations, not fight them, unless we can slowly move those limitations - which is not easy to do.

    Now we did have one thing that could have created cohesiveness: XMRV. If the research had been substantiated, and successful treatment devised, the community would have come together with a singular focus. The same might happen for Rituximab, or something else not even on the radar. This would be serindipitous, and is not something we should count on - good if it happens, but until then we can't plan for it.

    We have many agendas. Thats a reality. Wishing for something else is not realistic. Even if a few could be pursuaded to limit their focus, its not going to happen to the majority. There is simply no mechanism to do that - none that currently exists anyway. I do have thoughts along those lines, but they are very long term - possible more than a decade.

    When I discuss focussed groups however, there is an implication: there has to be a tight focus on goals. Activity based groups, with a specific objective, will have focussed goals and plans if its done right. Thats the best that can be achieved in the short to medium term.

    One last point: any agenda that creates a strictly limited focus, "core principles", given the complexity of the current situation, will in my opinion fall into a trap. Some of the advocacy organizations have that - and so they are better at what they do, but bad at what is not their core area. We don't want that universally.

    Bye, Alex
     
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  2. Jarod

    Jarod Senior Member

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    Interesting little tid-bit at the end of your article.


    Every time I here about the department of defense getting money for doing medical research I cringe.

    I think about scientists working in a top secret and compartmentalized groups with budgets that have little scrutiny.The "Department of Defense" in the United States is not the most humanitarian organization in my opinion.

    I say a closer look needs to be given at who/what is being funded, and not "dollars spent".

    Blog that! (Agent Robert Steele on importance of Blogging)
    ;)

     
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  3. Bob

    Bob

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  4. SilverbladeTE

    SilverbladeTE Senior Member

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    jarod
    The Pentagon spends $5 BILLION on Public Relations alone each year!
    http://www.foxnews.com/politics/2009/02/05/pentagon-spending-billions-pr-sway-world-opinion/
    Some of that is of focue on "psy-ops" and is useful, but lot of it's bullcrap and waste. (hehe Fox spills the beans, hehe)

    Add in the rest of defence spending and well, the USA is collapsing because more is wasted on military capability (and bailing out bankers etc), than the means to improve by growth in science, more than society can afford to bare, the society who's people make the wepaons, jioin the military, drive the economy

    Exactly how does having 5000 active nuclear warheads, improve the USA's population's lives in ANY meaningful way? Not one damn bit, and those billions suck the life out of the economy.
    500 warheads would be enough to fricassee ANY group of enemies on the planet!
    Sigh.

    What does it benefit a man, to gain the world, and lose his soul?
     
  5. Jarod

    Jarod Senior Member

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    Hey Silverblade. Good to see you. I can't wait to vote. :ninja:
     
  6. Esther12

    Esther12 Senior Member

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    Just a couple of quick OT points which bubbled up in my mind while having a few days of being on-line less. It ends up a bit rambling, and I was going to delete it, but decided to post it along with a warning that it's probably not worth reading.

    There are loads of death threats being sent these days. Someone of X-Factor is reported to be getting them (quite a lot apparently) for having a bit of a cry, the developers of 'Bayonetta 2' (a computer game of some sort) are getting them for releasing their game on nintendo's new console, rather than others. Now that communication is so easy, people can fire off an e-mail.tweet in the heat of their anger, and not need to think about it over-night, as they walk to the post-office, etc. I'm not sure what my point is, but both of the examples turned up in the last two days, so I thought I'd mention them. The coverage of reported threats from CFS patients does seem to treat this as a more serious matter than any of the others.

    Also - re patient's response to XMRV - to me, I think that we dodged a bit of a bullet here, at least partly because Lipkin did such a good job with his study, but also because most patients were interested in trying to understand what the evidence showed, and there was a fair amount of discussion aground this issue. Given the weird situation patients are in, and the quackery which surrounds CFS, I think that we were a prime group to react in a crazy way to all this - a real hope for a dramatic increase in understanding of the condition and possible treatments; a genuine on-going controversy, with the rumours which surrounded the Alter paper... it was the perfect recipe for patients to make themselves look terrible. Now that it looks like it's all over, I actually feel pretty relieved. I'm sure that this drama has left some people thinking less well of CFS patients, but I get the impression that it's also led to more people seeing it as a serious condition which patients are desperate to recover from.

    There are always things that can be improved with the way any group of people present themselves, especially if they have legitimate grievances, or face difficulties and hardships which are not well understood or respected by others. There is a danger of developing a group mentality, and I may have found myself feeling less of a need to contradict claims from other CFS patients which I disagree with, but am deeply familiar with and know I have criticised in the past. I do now rarely seem to get in to debates with other patients, when that was all I seemed to do for my first year here. I'm just rambling now - I can't remember what my point was.
     
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  7. Nielk

    Nielk

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  8. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I don’t think the restrictions are as great as you envisage. If we take the Pemberton article – firstly one could assess the likely audience profile from published print readership data (posted previously) and secondly one can defer to those who have an existing familiarity (in this case we actually have a contributor to this thread, who has insight into how the active online audience is different from the Telegraph print readership). It does mean that individuals have to take account of where and when they contribute – I’d place my own competence to contribute on the Telegraph website as pretty low, I’m simply too politically prejudiced against the Telegraph ethos to be able to easily engage there in an effective way. I could probably do it with some effort and significant preparation but I simply don’t know ( and am likely not sympathetic to) ‘the local terrain’, and I’d likely antagonise more than I could influence.

    However, the notion of a target audience can extend beyond site/publication specifics – if for instance one is primarily concerned to address, scientists, medics, administrators and politicians, it is not too difficult to describe that audience in fairly narrow terms (cultural, educational, etc) and set ones projected communication style wholly within the limitations that imposes. The alternative I’m afraid is that one just appears like a bunch of twats who don’t know what they are talking about, or as a disorganized, aggressive and inarticulate rabble.
    But who then is being spoken for ? One can’t simply say – the community is fractured so we are all free to advance whatever perspective we like in the name of the community ? To do so embraces illegitimacy, something which will become recognizable to an audience and result in a loss of credibility and so undermine any advocacy effort that is being made.
    Who/what/which community ? If there are desired objectives, there are only a limited number of ways to achieve those, that’s axiomatic. Saying doing ‘x’ will not achieve the desired end, isn’t telling anyone what they are and are not allowed to do, it’s an observation of practicality – of course one can disagree but then the challenge is to explain how/why something is possible in the face of advice/evidence to the contrary.
    I agree but unless there is some commonality that accepts the validity of alternate arguments and allows that prohibition on acting/speaking is at times advisable then any activity is likely to enhance the lines of fracture, rather than acting as points of co-operation. At this stage I’m afraid I see only the four large US and UK member organisations plus the PR based alliance of US groups as leading the way and anything else either inhibiting or clinging to the coat tails of those orgs.
     
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  9. Enid

    Enid Senior Member

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    Fractures - amongst us too. ?? And you can resolve the big fractures IV ?
     
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  10. alex3619

    alex3619 Senior Member

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    Hi IVI, I don't think many would disagree with that. In fact quite a number of advocates discuss this very issue privately. Its just not often seen in the wider ME community discussions. In part this is because, and I think there is good reason to say this, most CFS and ME patients are not engaged in such discussions, nor are they looking. Numbers of us who are peripherally engaged in advocacy, in theory, simply do not engage with serious issues. Much of the patient population appears to be indoctrinated into responding in specific ways. I am aware of many support groups that think there shouldn't be any advocacy, and similarly that ME and CFS are completely psychiatric. Where the patient population is situated is highly variable, and due in large part to the information they receive - and how accurate it is.

    With the high bias in the wikipedia, the CDC, and psychiatric hyperbole, plus lack of training in the general medical practitioner community, its not surprising patients have a huge range of perspectives. Add in media misinformation, and this is widely reinforced.

    There is currently no way to do the things you want us to do IVI, even if we thought they were the way forward. Prohibition? Who is going to listen? How are we going to get the message out? Most importantly, who decides what to prohibit? How do we trust them?

    My emphasis is on the opposite, though the goal is similar. Focus on what we can do, not on what we shouldn't do. I want to promote methods of advocacy that are more effective, and directed at specific targets. This cannot, in my opinion, be done by focussing on community feedback. This is going to take advocacy initiatives, including large advocacy organizations, and if they drive advocacy in specific directions, I think it will provide an example to the wider community, plus resources to improve advocacy. Three blogs from now I am addressing this issue, but first I want to discuss Zombie Science and Information Monopolies.

    Bye, Alex
     
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  11. urbantravels

    urbantravels disjecta membra

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    This right here is the major reason why so many ME/CFS advocacy messages make me cringe. I'm not an alternative medicine proponent, an anti-vaxxer, or quick to adopt the newest theory of the moment as a banner to ride into battle with, i.e. trying to get the world riled up about XMRV within months of the Lombardi paper. Just because I've been dumped on by the scientific and medical community like everyone else does not mean I align myself with all "alternative" points of view about science and medicine.

    And, with all possible sympathy for the plight of others who have different diseases that are neglected, contested, etc., I don't think it strengthens ME/CFS advocacy to bundle us together in a basket with other diseases that some label "neuro-immune" and then try to do joint advocacy for all of them together. I think it creates a disjointed and diluted advocacy message.
     
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  12. Bob

    Bob

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    A blog by an ME patient in The Independent

    Life with Chronic Fatigue Syndrome (M.E.) ‘I feel like I’m crawling through the dark with an elephant on my back’
    http://blogs.independent.co.uk/2012/10/04/life-with-chronic-fatigue-syndrome-m-e-i-feel-like-i’m-crawling-through-the-dark-with-an-elephant-on-my-back/?forumid=331851

    Myalgic Encephalomyelitis (M.E.) also known as Chronic Fatigue Syndrome is a chronic, fluctuating neurological illness. It is estimated that in the UK around 250,000 people are affected by it to varying degrees. According to a report last month from charity Action for M.E., more than one third of Primary Care Trusts don’t commission specialist services for M.E patients or cannot confirm they do. M.E. Sufferer Nicola Cousins talks about her experiences of living with the condition.
     
  13. Bob

    Bob

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  14. Snow Leopard

    Snow Leopard Senior Member

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    Right and how are you personally moving towards this goal?

    If there is one thing that is clear from discussions like this: It is easy to criticise, it is easy to propose general solutions, it is difficult to start achieving those goals. Doubly so if you have limited energy to purse them.

    Secondly, of the 'common charter', what goals and aims do you feel that most organisations will unite towards? (increasing research funding in proportion to the burden of disease for example?)
     
  15. Adamskitutu

    Adamskitutu *****

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    Of course, one immediate problem with that hypothetical goal would be the potential for taking up of any increased research funding by psychiatrists. This shows how difficult it would be to find across-the-board agreement even for a goal like that.
     
  16. Esther12

    Esther12 Senior Member

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    There was a thread on this a while back.

    My suggestion was campaigning for something like:

    'CFS patients should be able to trust medical staff, and deserve to be spoken to honestly and clearly.'

    Also, and related to this, an official recognition from the NHS of the problems which have been caused by exaggerated claims about the efficacy of cognitive and behavioural treatments for the condition.
     
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  17. Snow Leopard

    Snow Leopard Senior Member

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    The increases in funding I am talking about are quite large ($100 million per year NIH spending) and must admit I find it hard to imagine that many psychological studies to cost that much. In any event, better quality psychological studies will provide better evidence that such links (eg to stress) or efficacy of CBT have long been overstated. Have you noticed that much of the time that a new study is done on most psychological topics that the findings become weaker? (Known as the "decline effect" as various biases are slowly overcome).
     
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  18. alex3619

    alex3619 Senior Member

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    HI Snow Leopard, at least a few of us think an appropriate funding spend in the USA alone, not counting the rest of the world, is over $100M. I think over $120M if we were not in hard financial times would be appropriate, based on an equivalence with MS. Bye, Alex
     
  19. Shell

    Shell Senior Member

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    Ye gods and little fishes! Wouldn't that be good! But so many medical staff would need a personality transplant...
     
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  20. Bob

    Bob

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    I have to admit, that reading this article, I did think to myself that the author seems to have a lot of issues that could easily be misinterpreted as being psychological or psychiatric in origin. For example, having panic attacks and agoraphobia that stops her from leaving the house. If this is how some patients describe their situation and experiences of ME, it doesn't seem surprising to me that so many doctors interpret this as a psychiatric problem. Not that that's an excuse for the physician to be so utterly uninformed, lazy, ignorant and neglectful.

    I went through a phase where my endocrine system was fluctuating. It started with my thyroid levels, which fluctuated enough for me to be considered to have clinical hypothyroid disease. (It's back to normal levels now, or within the clinically acceptable range, without medication.) And then it seemed to me that other hormones (e.g. histamine) and neurotransmitters were fluctuating subclinically. It might have been the fluctuating thyroid levels that were causing the other endocrine fluctuations.

    At the time when my endocrine levels were high, it affected my mood in a positive way. Sometimes almost feeling on a high. I've heard that it's quite common for people with ME to experience an overly-high mood, or euphoria, occasionally. Jane Colby has mentioned it. (I think it's something that Betty Dowsett observed in ME patients.)

    But when my endocrine levels were high, I also went through a period of feeling anxious and panicky. For the first time ever, I started regularly experiencing a wave of anxiety that felt like it could turn into a panic attack. For a while, this was happening quite regularly for me. I could feel like this during normal activities, and not just anxiety provoking activities.

    And there was a period of having chest pain and palpitations.

    All of this could easily be misinterpreted as psychiatric issues. Indeed, my doctor suggested that it was bi-polar, ignoring the fact that she knew my thyroid levels were fluctuating. (And ignoring the ME, as to be expected.)

    My interpretation was that I was experiencing a surge of hormones and neurotransmitters, possibly related to the fluctuating thyroid levels, or possibly purely an endocrinal symptom of the ME.

    It's all settled down at the moment, and I've gone back to how I usually feel. My mood is normal, and I don't suffer from anxiety unless in anxiety provoking situations.

    So I can see how and why some physicians and researchers misinterpret patients' symptoms, especially if they are purely relying on a patients' description of their experiences, rather than on medical knowledge about ME. It's a shame that the doctors don't read the literature.
     
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