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When PR means Public Relations, not a mythical rebirth part two.

Blog entry posted by In Vitro Infidelium, Sep 19, 2011.

Audiences and an Activism Abyss



A logical progression from When PR means Public Relations part 1 would now involve a principled discussion of the target audience(s) that M.E/CFS representation needs to address, however given the current media position of M.E/CFS a purely principled consideration is redundant without also considering the pragmatic question of whether M.E/CFS advocacy is even achievable given the abyss into which activism has hurled the very image of M.E/CFS both as a medical condition and as label of people.


no longer

The principles that should be at the forefront of an effective PR approach to M.E/CFS (audience engagement, trustworthiness, authority and consistency) are the very things that M.E/CFS activism has not only neglected, but has both rejected and destroyed, creating a global image of M.E/CFS sufferers as hysterics and fanatics. Every abject M.E/CFS PR failure is excused on the basis that the world is unfair and nobody loves us, that we are worse off than people with HIV, that there is a worldwide conspiracy of concealment and on and on and on in a self confirming spiral of self approved isolation and victimhood. Everyone should be in absolutely no doubt creating an effective message from that perspective is impossible, even incidentally associating a PR message with that perspective will kill the message dead. No useful audience can be engaged from such a perspective, no trustworthiness communicated, no authority claimed, nor useful consistency be demonstrated. Such a position has to be abandoned, and a scorched earth policy enacted. In the media the loss of trust is understood to be highly contagious, which is why one of the worlds most resilient media brands was forced to obliterate a profit making (a rare thing ) newspaper after it lost the trust of its key audience. That audience being the advertisers. M.E/CFS advocacy and activism is now so damaged as to raise the question of whether it is even wise to use the terms advocacy and/or activism where a key audience is to be addressed, and it may be far more pragmatic to use a term such as representation, it being less tainted.



The tainting of M.E/CFS advocacy and activism can be located in three conditions:

1. Lack of (or belief in the lack of) opportunity for a grass roots demographic to engage with, to participate in and to shape, the representational message about M.E/CFS as it is expressed by established M.E/CFS organisations.

2. Lack of a consistent assertive image of effective M.E/CFS representation which is distinguishable from and actively rejecting of: altmedary, hack psychology, self helpery, quackery and most significantly, aggressive fanaticism.

3. The embrace of an hypothesis that presents a single causative agency as the defining images of what M.E/CFS is, of who it is that is affected by M.E/CFS, and of who it is that is mediative of treatment and cure of M.E/CFS.

I can already hear the clamour of What about the psychiatrists, its their message that make our lives so difficult ? We (I, you, us) can never (except under repressive regimes) have control over their message (whoever they may be), the only control that we (I, you, us) can have is over what we say and the images that we project. Certainly we can respond to them, we can even be clever and act proactively to their predicted future messages, but complaining about them and their message only confirms our impotence. An important PR rule: never let the opposition define who you are or what you have to say.

Audience Reaction

Given the tainted picture that M.E/CFS representation now inherits, the question: Which audiences does M.E/CFS representation need to engage with to advance the interests of M.E/CFS affected people ? has to be prefigured by the question, What is needed to escape our self excavated pit of association with dubious messages and even more dubious activities ?

Were we to be talking about a single corporate entity, the answer would be relatively simple, albeit one that maybe highly challenging to implement. First and foremost would be an explicit statement of intolerance for the substance of the dubious message, reinforced by strong unequivocal presentation of a message affirming a new stance. In respect of M.E/CFS there is no single corporate structure, nor even a co-ordinating structure between established organisations, and the results are frequently ineffective or entirely absent responses from organisations and disparate and confused responses from often warring cadres of M.E/CFS affected people. For any observer of this process, which may particularly include those who would consider themselves as having been addressed by M.E/CFS advocacy and/or activism the lack of any cohesive response of itself questions the validity of the trustworthiness, authority and consistency of any message coming from M.E/CFS affected people.

Defending the Indefensible

The current incompetence of M.E/CFS advocacy and activism has been painfully demonstrated by the challenge of the allegations of intimidation of scientists. The response has been a hideous melange of obliviousness (US M.E/CFS organisations), equivocation and blaming the messenger (UK organisations) and outright apologism and denial (forums and blogs). Nowhere has there been any sense of the need to appraise what long term effect this collective response has produced, yet the most basic understanding of communication dynamics informs us that failure to address, to equivocate, to blame others, to embrace apologism and to pursue denial in the face of legitimate concern, has the effect of establishing distrust and withholding approval of authority. Without trust and without authority nothing that M.E.CFS representation has to say can have any value. The audiences that M.E/CFS representation now needs to address have to be approached not just with a message that is designed to effect change for those affected by M.E/CFS, but to establish long term trust and approval of authority. Ill deal with audiences in detail in a subsequent post.
  1. alex3619
    Hi IVI, there are interesting comments relating to public relations on the Oslers Web site:

    http://www.oslersweb.com/blog.htm


    August 22, 2011 5:41 PM EDT
    My great wish for patients would be that they cease worrying about how they "appear" to anyone. They have been ridiculed and abused for so long that many live in terror of being perceived as being "nuts" and "wackos." The current pogrom can be seen as yet another effort to terrify and silence patients, and it is possibly the most pernicious and public of all. These techniques of decades duration have resulted in a kind of instsitutionalized mentality wherein patients are either admonished, or willingly impose upon themselves a seamless, calm demeanor when in fact a far more appropriate and natural response is anger, even rage. After 30 years, the practice of extraordinary restraint, a false facade of calm and white gloved manners, has resulted in less than zero. Meanwhile, perhaps hundreds of thousands of needless deaths have occurred. ACT UP did not worry about whether people thought they were nuts and wackos, nor did Civil Rights leaders in the Sixties, nor did espescially anti-Vietnam War protestors--all of whom achieved their goals.- Hillary Johnson

    I highly recommend this site. We have been nice and accommodating to the established position for nearly 80 years (remember those two patients in 1932, and the patients in the epidemic in 1934? Does anyone? Lets not keep quiet!) I think public relations is important, but it is not as important as getting things done. Public opinion is not our primary issue - funding and discovering a treatment or a cure is. I dont care if everyone considers me a loony fruit loop, as long as it gets us to a cure. Image is important, but only to a point. What I do care about is that we operate within the limits allowed by the law, with as much civility as advocacy allows, but that is about it.

    One of the problems you face IVI is that as an advocate of public relations approach you are not proceeding in a way that is likely to sell your message to the ME community. That doesnt mean that none of us listen - advocates are always looking for ways to make a difference. It does mean that we have to take into account our limited capacity, limited numbers of advocates, and entrenched prejudice (as in prejudgement). The CAA tried the softly-softly approach for a long time, but their recent success has been in assisting the funding of great research, not public relations.

    Again, I would be interested if you have a way to make a more organized public relations campaign happen. The harsh reality is that all we will have to do this is a scattered fractious group, with different messages, very little in the way of resources and I still see no evidence that this will change in the medium term.

    Now for a galvanizing factor that could change the public relations outlook, look at the research. Look at how much of an impact XMRV has had, whether or not it is correct. A major breaking discovery, not small steps but a gigantic leap, is capable of getting world-wide patient attention. One major discovery could get the global ME community on board with a single agenda - but without that the chances are very slim. So I disagree with Cort on this, I think that XMRV has helped a lot where it counts, it just didnt go over well with the media.

    Admittedly I have a strong science bias, not a political or public relations bias, and admittedly it is clear that the non-science of many years duration relating to CFS has shaken my faith in the medical establishment in particular, but I still feel substance is better than spin, and that substance is hard data from well conducted science.

    I am with Hillary on this too: many of us have suppressed rage at how we have been treated. Some of us may indeed step over the grey legal line from time to time due to this rage, but the vast majority of the advocates who I read do not. We need anger and advocacy much more than we do good opinion. Nearly a century of being nice hasn't helped us at all - we need to be civil, we don't need to be nice.

    Finding the balance between reason and outrage is a tough call, and one I always struggle with. We are actually very well behaved people with the kind of outrage we feel are often into much more dangerous activism.

    Most of this post was written before the Ottawa conference, but I got distracted.

    Bye
    Alex

    PS I am also not convinced that there have been ANY death threats - I would like to see a police file where someone has been identified. I am acutely aware of how many trolls there are out there, so if threats have occurred I want to know if it was someone unidentified, a patient under CBT/GET or someone in the wider ME or CFS communities. Vague claims don't impress me.
  2. Cort
    M.E/CFS advocacy and activism is now so damaged as to raise the question of whether it is even wise to use the terms advocacy and/or activism where a key audience is to be addressed, and it may be far more pragmatic to use a term such as representation, it being less tainted.

    It was interesting to hear Clauw say that he thought that FM's stock has risen considerably over the past couple of years but that CFS's has fallen - over the two years that XMRV has dominated the news.

    I really wish the WPI had been more careful...they were representing the CFS research wing to many people and at times they came off in the same way some of the overwrought patients did. Thankfully they have calmed down. I think in the end, though, that Clauw was wrong - I think, despite the missed opportunities, that we came out ahead.

    I tried in that article to state what I believe is true - that when you ignore alot of people for a long time and then give them such a gift as XMRV appeared to be (and then take it back) - then of course there's going to be some really heated emotions. If the research community had embraced CFS earlier I think it would have been quite different.
  3. Cort
    I can already hear the clamour of What about the psychiatrists, its their message that make our lives so difficult ? We (I, you, us) can never (except under repressive regimes) have control over their message (whoever they may be), the only control that we (I, you, us) can have is over what we say and the images that we project. Certainly we can respond to them, we can even be clever and act proactively to their predicted future messages, but complaining about them and their message only confirms our impotence.

    An important PR rule: never let the opposition define who you are or what you have to say.

    I must say I never thought of 'never letting the opposition define you' but that's what we've been doing. That results in our being victims of the opposition rather than focusing on pushing an agenda of our own....and enrolling others in it.
  4. Cort
    The principles that should be at the forefront of an effective PR approach to M.E/CFS (audience engagement, trustworthiness, authority and consistency) are the very things that M.E/CFS activism has not only neglected, but has both rejected and destroyed, creating a global image of M.E/CFS sufferers as hysterics and fanatics.

    Lots to consider here. I tend to agree that we have not been very effective advocates and these are some of the reasons why.

    The current incompetence of M.E/CFS advocacy and activism has been painfully demonstrated by the challenge of the allegations of intimidation of scientists. The response has been a hideous melange of obliviousness (US M.E/CFS organisations), equivocation and blaming the messenger (UK organisations) and outright apologism and denial (forums and blogs).

    I agree that intimidation has been a horrible mistake and we should have cut it off - rather than apologise for it - simply because the negative consequeces (to our public image and to our goal of getting more researchers engaged) - are so devastating.

    I tried to contextualize our situation in quotes I gave to this reporter- http://news.sciencemag.org/scienceinsider/
  5. In Vitro Infidelium
    holding post only