When PR means Public Relations, not a mythical rebirth part one

Blog entry posted by In Vitro Infidelium, Sep 14, 2011.

Madmen for M.E

Ive written critically and at length, both on another blog and on the PR forums about what I see as the failings of M.E/CFS advocacy and about the attitudes that underwrite those failings. Not surprisingly other posters have complained that I dont offer what seem to them to be effective alternatives, my response to those complaints is, that if theres no agreement about what the problem is, or even that a problem exists, then proposing something different is pointless. This is the start of an attempt to set some context, identify the big issues and suggest some approaches that might achieve a consensus amongst a coalition of the willing on a way forward for the effective presentation of M.E/CFS issues to audiences that actually matter.

Some basic concepts:

The Audience the body of people ( anything from 1 person to 1 billion) that has to be addressed to achieve the marketer, seller, lobbyist, politicians objective

The message both the overarching principle(s) and any targeted fact, position, belief, concept etc that a marketer, seller, lobbyist, politician etc wants to convey to an audience. Can be anything from this sugary cereal will make your children strong to stop this war or more money is needed on road maintenance in Poughkeepsie.

The messenger the message creator.

Message support combination of practical elements provided by the messenger to certain audiences (photographs, interviewees etc), and ideological appeal written into the message itself.

Message management/control setting the terms in which the message is presented, and preventing it from being hijacked or represented by competing interests.

Those whom the Gods would destroy:

Public Relations, which may include, but is not directly equal to, marketing, advertising, promotion and selling, can be defined in one simple term the manipulation of perception, something which, as with prestidigitation is at its most effective when achieved invisibly. Politics can be considered as a specialised form of PR, where manipulation of perception is replaced by a more pragmatic process: the motivation of bias. The key quality of all PR is the establishment of trust, the audience must believe in the validity of the message (and in consequence the messenger) that is being conveyed. This audience belief is far easier to achieve when (at least within a given perspective) the message is true manipulation of perception need not of itself be deception, although though the two can in given circumstances be equivalent. Whilst having a truthful message is pragmatically desirable, PR is not about truth in any absolute sense, PR operates in wholly relativist terms. Polarising activities and arguments are usually avoided in PR unless a very specific objective is sought, even then great caution has to be exercised because control of the message is easily lost. Fundamentalists of almost any kind are usually hopeless at PR because the rigidity of their own position inhibits any sense of flexibility in others, it is engagement with the flexibility of the audience which PR is most concerned with. Excepting of course where the engagement of the fundamentalist on a fundamentalist issue is concerned, but we are then in Joseph Goebbels and territory.

Audience Selection:

Effective PR depends upon an understanding of who is to be addressed who is that that the marketer, seller, lobbyist, politician etc, needs to influence to achieve the change (increased customer loyalty, increased sales, redirected government spending, increased approval rating etc) that supports the marketer, seller, lobbyist or politicians ambitions. For example when a PR operation produces a media release, it might be assumed that the release is written in terms that will engage the final audience comprised of the newspaper reader, radio listener or TV viewer. For a media release to be effective it is not the final audience for which it is written, and although any media release will contain key images, text tags and hooks that will hopefully be re-broadcast by the media to its audiences, the release itself must be written for the journalists who the PR professional is seeking to motivate to facilitate the broadcast. It is not necessary for a journalist to have any belief in the validity of the PR message but the journalist must believe both in the authority of the messenger, and that the message has value in attracting reader/listener/viewer attention.

There are circumstances where dependence on a re-broadcast is not involved; politicians, administrators, professional bodies and other institutions can all usually be addressed directly. These are however very challenging audiences, they have numerous competing demands placed upon them, they are usually very PR aware, often being practitioners themselves, all of which requires that PR messages addressed to these audiences require high levels of message support.

Additionally there is mass advertising where the audience is also addressed directly, although cost and necessary sophistication of a mass advertised message provide major limitations on who can utilise it as a communication medium.

Message Support:

It is a truism that PR is not about truth and in consequence the PR message can not be treated as though it will stand up as if it were tablets of stone. The very process of engaging in PR of itself opens the message to scepticism in all but the most well predisposed audiences. Effective PR involves identifying the audience that is required to be addressed, crafting a message that engages that audience and supporting that message with demonstrable advantage to that audience. In the case of a media release where the audience is comprised of journalists, supporting advantage comes in a number of forms: ease of translation to article or programme segment format, accessibility of textual imagery, availability and quality of graphic imagery, availability of quotable sources etc. In short, the supporting advantage for journalists is how easy the media release publisher makes the journalists job. Similar message support applies to audiences comprised of administrators and public servants who may have the task of translating the message for consumption by others such as experts or politicians. When addressing exerts or politicians directly the supporting advantage must be evident within the message itself - it must demonstrate why adopting this message as their own, will confer advantage to the individual audience member.

Advantage and Trust:

Successful PR depends upon the audience having trust in the presenter of the message the success of a re-broadcast message is dependant on trust in the broadcaster by the reader , listener or viewer. For the messenger there is little control over the broadcasters relationship with the reader , listener or viewer, and management of the message is difficult to maintain. Trust is vital in direct communication between messenger and audience an audience soon learns to distrust any source that shows inconsistency, confusion or dissemblement The issue of trust is doubly the case where advantage is concerned for example journalists who expect to have a media release accompanied by access to authoritative interviewees, but who are instead provided with only media unfriendly contacts will quickly put a block on future contact with the messenger. An administrator, professional or politician supplied with ineffective, inaccurate or prejudiced material will cease to be available to listen and any public official or politician will become permanently unavailable where the messenger is associated with illegality or scandal. Authority and consistency are vital attributes of an effective PR process.

Life ain't fair

All of the above provide rigid limitations on what can be effectively achieved by whom, there is no democracy involved, nor entitlement other than can be (in some circumstances) bought. The audience must be understood and addressed in its terms not the terms the messenger would prefer, the messenger must be credible, the message has to be meaningful to the audience, the message must be well supported and it must convey advantage and elicit trust from the audience. All of which makes the current position of 'PR for M.E/CFS' a mamoth task that can only be begun by hoisting the image of M.E/CFS 'representation' out of a largely self inflicted chasm of dubious credibility.
  1. KFG
  2. alex3619
    No IVI, I don't mean producing a formal proof of being wrong, I mean producing a workable plan that is achievable, likely to be effective and is capable of being enacted by the very small number of people who are trying ... at most thousands world wide.

    IVI, spend some time talking to people who have been sectioned, have been threatened with sectioning, or who know people this has happened to ... threat of sectioning seems to be far more widespread than actual sectioning, and this is used to control patients, and it is why they are fearful.

    The two most known cases are Proctor and Mirza, however there are other cases where there is direct intimidation of parents with sectioned children and they are VERY fearful of fighting it. This happened here in my city a decade ago, its not just the UK, and the parents to this day will not talk about it so far as I am aware, despite fighting multiple court cases to get their child back.

    Community care has failed here too. Many psychiatric patients are in the community here - living on the streets.

  3. In Vitro Infidelium
    If you have a plan that can change the circumstances I have outlined I would be interested to read it - but I doubt very much that it will be realistic or appropriate. Call me a sceptic. Here is your challenge: prove me wrong.

    I applaude scepticism whereever I come across it. However I can not 'prove' you wrong and at the more reasoned level of defining the 'mountain that has to be climbed' I accept the difficulties you identify. I don't accept the mountain isn't climable, nor that the resources to achieve an ascent are necessarily unavailable - however that is dependent upon a change of perspective amongst M.E/CFS affected people, and I see the position you've proposed to be of itself a statement of the status quo - hence I can't give you a proof within those terms.

    I do find it dismaying that 'fear of sectioning' can be invoked - the reality is that, despite any current lurid forum stories, getting any kind of psychiatric treatment in the UK beyond a GP prescription, is extremely difficult. In-hospital beds are almost impossible to come by and seriously distressed people consistantly have their status downgraded because the in-hospital treatment that they actually require is unavailable. There are thousands of mentally ill people in UK prisons that the Government acknowledges should be in a hospital setting, but transfer can not be achieved because there is absolutely no spare capacity in the system and there has not been since the mass closing of (truely horrible) Victorian instituitons forty years ago. Community care was supposed to become the model of treatment, but inevitably it never recieved the necessary resources and despite huge investment in health care in the UK, Mental Health remains the Cinderella part of the NHS. The chances of someone who has not demonstrated some very determined effort to cause harm to themselves or to someone else getting through a Sectioning process is absolutely minimal. Of course it may happen, but it so unlikely as to make fear of it wholly unreasonable.

    I certainly acknowledge that many of us feel compelled to write pseudonymously, although I would cite the likely attention of agrieved fanatics as a basis for caution than fear of the 'authorities'.

  4. alex3619
    Hi IVI, you said "If a 'message' is to carry the strength of the collective will of those in whose name the 'message' is published, then it is vital that such a collective will is demonstrable - both in terms of the exercise of rights (having a say at some level in the principles of the message or even in the terms of the mesage) and responsibilities (adherence to the terms of the message, acceptance of failed as well as successful outcomes."

    There is not and cannot be any such collective will under current circumstances for global ME or CFS representation. Its pie in the sky fantasy. For us a large demonstration is a handful of people out of thousands of disabled people. Most of us are too sick, too disempowered and too shattered by societies treatment of us that we cannot organize.

    Patient organizations typically have major problems. I was at the final general annual meeting of my state CFS society which folded due to insufficient numbers of people who were well enough to keep it running, despite having a large membership.

    CFS (not ME which I would argue has even more disabled patients) has in three morbidity rankings I can recall reading over the last decade and a half, been placed at the most disabling, most disabling, and third most disabling disease included in the rankings. This is over most cancers (and over all cancers in two rankings), heart disease, kidney and lung diseases, AIDS and so on. CFS mortality is low at least in the short term, but morbidity is very high.

    Add to this a complete failure of society to support patients, and by society I do not just mean governments but general charities, family, friends and insurance companies. This dis-empowers us even further.

    I would like to see a global patient organization alliance, but this will not be easy, and at best it will be unrepresentative. This is not a path worth discussing unless you can come up with a mechanism which is doable or potentially doable with more consideration.

    I am an advocate on these issues. Its why my real name is known all over the internet. I am accountable if I cross a line. Many patients however are in untenable positions if they reveal their identities. In the UK they are at fear of sectioning. In other places they are at fear of losing their jobs, or having their insurance companies using online statements against them. Some are afraid to say much for fear their families will read it. We are very much the lepers of the modern age.

    Most of all they cannot handle stress, so their illness drives them to be quiet and complacent - but a good number of patients I have talked to are seething underneath despite a quiet, complacent exteria. Ironically this can increase their stress by preventing an emotional outlet.

    If you have a plan that can change the circumstances I have outlined I would be interested to read it - but I doubt very much that it will be realistic or appropriate. Call me a sceptic. Here is your challenge: prove me wrong.

    Alex Young
  5. In Vitro Infidelium
    Hi IVI, I have discussed the issue of funding biological research with hundreds of patients, both in the real world and online. I do not recall one that thinks that funding focussed biological research is a bad thing.

    Of course that's pretty much indisputable - as commonly accepted 'biological research' (all medical research is biological in some sense) is "motherhood and apple pie" for M.E/CFS affected people, but reliance on such 'certainties' leads to a neglect of important processes. If a 'message' is to carry the strength of the collective will of those in whose name the 'message' is published, then it is vital that such a collective will is demonstrable - both in terms of the exercise of rights (having a say at some level in the principles of the message or even in the terms of the mesage) and responsibilities (adherence to the terms of the message, acceptance of failed as well as successful outcomes. The lack of rights is evident in the recent support of AfME for the Crawley research http://forums.phoenixrising.me/showthread.php?13708-UK-Impact-of-CFS-ME - although AfME has a large membership, it is clear that AfME is hampered by a lack any definitive internal representation of members' views which must surely contain significant opposition to the presentation given by the Britol researchrs and their PR people. The dangers of lack of shared responsibility is frequently demonstrated - ill considered email box spamming being a regular feature; the PANDORA XMRV Times Square advert is also a good example - people were able to vote, but no one had to accept any resposibility for the fall out. As it happens New Yorkers appear to have been (unsurprisingly) unfazed by what amounted to little more than a glorified 'The End is Nigh' billboard, albiet in moving neon, nevertheless this alarmist diatribe could have indelibly associated M.E/CFS with an hysterical response to a scientific damp squib, or worse a scientific debacle. Yet no one has to take responsibility for either the misapprehensions that led to the ad being scripted, nor it's abject failure.

  6. alex3619
    Hi IVI, I have discussed the issue of funding biological research with hundreds of patients, both in the real world and online. I do not recall one that thinks that funding focussed biological research is a bad thing.

    The only real issue is selection bias - my personal experience is limited to patients who are either online, or are committed enough to attend medical conferences or seminars. That will bias my view of course. However, I have also been talking to medical researchers since 1993. This is again a selection bias. The issue I have is that the view is almost universal. In other words, the prevalence of this view is so high that I think that alternative views would be an aberration and not based on the facts.

    I do not doubt for one minute that there are many patient adherents of the biopsychosocial view (or at least patients who acquiesce to it) - how else would some of these psychiatrists have any patients? I do have doubts about either their diagnosis or the validity of their views when they apply to patients like me however.

  7. In Vitro Infidelium
    What is needed above all is some hardcore rigorous science to blast away all the crap surrounding this illness at present.

    Unfortunately science tends to progress through multiple small steps rather than big breakthroughs and blasting away the crap may not be something science can easily achieve. I would argue that much of the crap exists within the domain of PR and that effective representation of M.E/CFS affected people could dispel at least some of the crap and facilitate a more balanced approach toward the science of M.E/CFS.

    I'm not suggesting PR isn't important, especially when you witness the truly bizarre yet effective behaviour of Simon Wessely, but one published paper nailing an illness mechanism even for a CFS subgroup will have a far greater effect than years of organised PR. Lombardi et al, before it began to be seriously challenged, was suitable evidence of this truth. Get the science right. I'm willing to bet there will be game-changing developments in the next 12 months or so. And they have nothing to do with XMRV.

    In PR terms, rather than demonising Wessely, a more accurate assessment can be achieved by looking at the performace of the PR professionals who assist in the promotion of Wessely's 'message' - they've run an excellent campaign over the last six weeks, perfectly timed for the UK's political closed season (August to mid September) - multiple cross media coverage, exposure of a publicly unsympathetic opposition (crazed patients) and counter messages (such as they were) effectively neutralised. As to Lombardi et al, it never was a proof of how a single study could sway the world - scientifically it always looked like a poor judgement on Science's part to publish (prior plausibility was absent - single infective causation in a gender biased patient group ? ) and in PR terms looked like a train wreck in slow motion - tears before bedtime etc. Not all publicity is good publicity and linkage with XMRV is a PR burden for M.E/CFS not a benefit. All science should be approched with scepticism, both by scientists and PR professionals. And that applies to whatever is claimed as the next cure, breakthrough or advance in understanding - the bigger the claim, the more dubious one should be - small steps are what science does best.

  8. In Vitro Infidelium
    Hi IVI, there is one issue that I think the vast majority of ME and CFS patients could get behind - funding that is proportional to the social and economic impact that is for investigating the biology of the conditions. This would be for strictly defined groups, not generic chronic fatigue or the broad Oxford definition of CFS. Bye, Alex

    That's an 'answer' but what was the question ? I don't mean that literally, I mean that we need to be very clear that specific solutions need to be matched to well defined problems. In this case I think your answer fails to address issues of representation - who are this 'majority' ? how are they empowered to express their views collectively or individually ? and also issues of effectiveness - what processes of putting the message forward aret be used and what are the wider effects of using such a process ? In answer to the last question, if we are going to see another mass spamming of official email addresses - then the effect is self defeating. I'm afraid that before reaching any answers, many more fundamental questions have to be asked about who M.E/CFS affected people are and who (if anyone) is going to speak for them under what circumstances.

  9. In Vitro Infidelium
    Hi IVI, in broad terms I have no problems with your blog on this issue, at least in part one. In specifics I think certain issues are being overlooked.

    The issue is a large one which is why I decided on a series rather than a single 'catch all' post - so I expect to catch up with most of your comments in further blog posts. At this stage I'm more interested in describing the landscape rather than proposing solutions or actions.

    Only with specific messages in specific campaigns should consideration be given to reaching a specific audience. Our audience is really everyone, but I agree that specific elements of society will respond better to some approaches and not others.

    Conceptually my argument is that there are multiple audiences, all of which have different characteristics whch need to be addressed. The problem with the approach of "our audience is everyone" is that it invariably leads to addressing no one but oneself - which is where M.E/CFS pretty much is at present. There maybe an impassioned exposition of the M.E/CFS illness, but no one that matters is listening because the exposition is what 'we' want to hear, not what those who can effect the changes we want, are engaged by.

  10. alex3619
    Hi KFG, I too think that it is scientific research that is the key to changing everything, not public relations. For the last 18 years I have been involved in pushing CFS research, though I have preferred the term ME for some years now. Its only in the last several years that I have looked to political and other issues.

    The public relations side of things for me should have the main goal of backing independent quality science. Domination of the science by a small number of hypotheses (one in the UK) is not a good thing. Even in the UK there are other hypotheses and research that has been systematically ignored.

    There is however the issue of impeding the spreading spin coming from the biopsychosocial school. It is not as important as the science, its only about slowing the dominance of this hypothesis. If this hypothesis becomes dominant elsewhere as it has been in the past in the UK, then all government research funding into every other hypothesis could disappear. Public relations is about getting the funding to find the real cause and real treatments of the one or many diseases we have.

    A secondary goal of the public relations, directly tied to the first which I have embraced recently, is to alter the attitude of doctors who think CBT/GET are fantastic treatments. If it takes 20 more years for the science to totally debunk this, as apposed to the partial debunking we have now, this means 20 more years where patients will be abused. This is not acceptable.

    Your point however does reinforce my original premise here: the only thing we can all agree on is the need for more funding for quality scientific research.