Here are differences among an issue, a problem, and a crisis.
I will propose a strategy that takes one of these differences into account.
Suppose things are Machiavellian. Here is a sketch of one way it might look. It is a composite to illustrate a strategy. The important thing is whether the strategy is useful.
I am a total amateur at political science (or whatever field this is). I probably don't even know the first thing you're supposed to know.
Feel like reading anyway?
An issue
An issue is where millions are suffering and dying and in need of massive scientific research immediately, but you don't want to do anything about it.
So you take steps to make it look like they are not suffering and dying.
Make sure their death certificates almost never show that they had anything underlying in common. Keep them out of official statistics. Keep them out of medical curricula.
This is not difficult. All of it can be done with only a few rules. Doctors, among others, will follow the incentives that you set.
You don't need to worry about checks and balances, because they only become meaningful at the crisis level. It is not as if billion-dollar industries have no influence.
Conflation and confusion are useful. At this level they keep others away from the field.
In such a way, you can keep an issue on the back burner indefinitely. All you have to do is make sure it doesn't become a problem.
When there is an issue, you are rewarded for managing it. Most princes will have little trouble most of the time.
A problem
A problem is where your career is blocked and you need to do something to unblock it.
The chief aims are settling it into an issue and preventing it from becoming a crisis.
You can:
- Make it look like it went away.
- Make it go away partly and temporarily.
- Actually solve it.
These are almost always in increasing order of inconvenience to your backers (if you have any) and to you. Otherwise it would have been actually solved already.
They are therefore almost always in decreasing order of desirability.
Fund studies that exclude as subjects those who have the disease. Those dying from it never get studied.
This should be used at the issue level for maintenance, but it scales well to problems. You are already denying funding to scientists who study the disease that people are dying from. If a privately funded study comes out, counter it.
At this level conflation and confusion are instrumental in solving specific problems.
Press campaigns and false advocacy organizations are also at your disposal. Step up character assassination. Nobody will check facts or funding until the crisis level.
Create a black-hole advisory committee. Make a promise, which you have no intention of keeping. This actually works.
With a problem, you are rewarded for handling it. A skilled prince can usually achieve this with some effort.
A crisis
In a crisis, you might lose your job or be imprisoned for the crimes you committed. Without that, it isn't a crisis.
A crisis has to be settled — desublimated — into an issue again. Your actions are on the radar screen.
Your backers are no longer top priority. If you are too solicitous of them, you will become like Saddam Hussein's information minister, who on a rooftop loyally claimed imminent victory as coalition ordnance exploded below.
The time will come when your backers have no use for you either, because they are princes too.
In a rare crisis you get honors for addressing it, perhaps taking credit for the work of those who care about actually solving problems. This can boost your career.
In a serious crisis, even a risk-taking prince does not have that option. You have to give those who are actually capable everything they need, then get out of the way.
A prince cannot carry anything else off.
Escalated problem solving
Crises harbor a particular danger that I will refer to later:
Princes can be beguiled into escalated problem solving — higher-profile scapegoating, better-funded astroturfing, bigger lies, and worse — but the risk is dire.
Some crises cannot be handled. Mistaking a crisis for a problem has hastened the downfall of too many princes.
What this means for advocacy
That is the sketch. Think of it as fiction if you are a newcomer — but it helps if you recall the history of HIV/AIDS and the Tuskegee syphilis experiment, and the latest in fraud and corruption in medicine. Or any slice of it.
It isn't important if it's a little inaccurate. There isn't only one prince as in this composite.
For our purposes the important thing is problem vs. crisis. Here we can think about strategy.
The Pandemic and many of its allied diseases have been managed for decades. Occasionally they became problems, but were handled and put away, unblocking those career paths.
Objective
We need to convince certain princes that there already exists in this world a serious crisis, which cannot be handled but must be met honestly.
I say certain princes, because other princes already know it. More on that in a minute.
Have we tried speaking the language of princes recently? What follows is one possible way.
It starts with an observation.
Shifts happen
Even a prince who thinks there is merely a problem knows that a phase shift can come out of nowhere. A problem can become a crisis quickly.
For example, and this is just an example, one courageous witness can set things in motion. It can make the difference between the propaganda and unrestrained calumny that assault us now — and moving on to the ICC.
ICC as you know, stands for International Criminal Court where crimes against humanity are tried.1
Scientific progress can only be delayed, and acts of delay will be widely known for suffering and death. When the dam bursts, perspectives change in a flash.
Attempts to erase evidence get many princes caught earlier. That itself can burst the dam.
It isn't any single thing
Consider the sum total of things that can go wrong for a prince.
Suppose a leaderless movement takes up our cause. Or it becomes an election topic. Or a tenured scientist gets real. Or a billionaire invests. Or a denialist persecutes the wrong person.
Suppose an unknown unknown just ups and unknowns. A given prince suddenly becomes the fall guy.
There are a thousand ways for a prince to fail and they are all peering at you like a cat twitching its tail. I don't think a prince can predict what will happen or when.
Now to my real point.
Princes have different incentives
The "we CAN'T let this happen" attitude is evident among denialists today in their escalated problem solving. They are taking risks. Have you noticed?
However, taking risks only makes sense for denialists who are in deep (i.e. those who don't have much choice).
That is a divide-and-conquer opportunity.
Princes can make rational decisions
Here is the basic fact:
Princes who are less culpable can no longer cast their lots with princes who are more culpable.
The career and legal risk is huge. Less-culpable princes are behaving irrationally — against their own interests and not merely against human life. In most cases (not all) that means they are misinformed and lacking direction.
Without direction, they don't visualize the changed world after the dam bursts.
There is little a more-culpable prince can do to make escalated problem solving worthwhile to a less-culpable prince — once the latter is accurately informed.
The money spigot does not defray risk. Neither does yelling at your subordinate or pretending things can wait. Or promises. Incentives are just off. They do not work.
However, in a serious crisis, with advocates laying out the logic of {severity}2 and {alliance} plain as day, and mild sufferers joining us (and GETTING IT), and Whole Things written, and political risks outlined rationally, and believable severe legal precedents, to the correct princes, incentives fall into place.
With enough nudging, less-culpable princes will do the right thing for their own sake.
Even princes cannot wait
How soon these particular princes, our audiences, recognize ineluctable reality is everything.
It does no good when it is too late for them. Large numbers of today's mild sufferers will be tomorrow's severe ones and dead ones. Delay will be pushed at every possible turn by the more-culpable denialists. It requires active and pre-emptive opposition.
Call for action
If the above total amateur analysis has merit, then what specifically can we do now — what can you and all of us do right now — to accelerate that recognition?
Samuel
Footnotes:
1 For newcomers, the initialism also stands for {International Consensus Criteria}, sometimes called MEICC. Hope that didn't confuse too much.
2 Severity is critical for a large number of reasons, but for this and most audiences, note that sympathy isn't on the list. The goal is to provoke rationality by pointing out how much career and legal trouble they will personally face by aiding and abetting the human and civil rights violations, the corruption, the fraud, the abuse of power, etc.
Samuel, I don't have an answer, but want to acknowledge the tremendous effort you put forth to share this with us all.
ReplyDeleteThe best boss I ever had when I was still a gainfully employed, contributing member of corporate America told our team that the best way to win a political battle we were fighting was exactly what you mentioned - divide and conquer. We were partially successful in doing that in the specific instance I mention.
How we translate that strategy into our world of neuroimmune disease, I don't know. But I appreciate you starting the dialog!
Hi Samuel-
ReplyDeleteThank you for the effort it took to write this piece. I typed out a two paragraph comment, and then lost it. Ack.
Shorter version: Divide and conquer is always a good strategy. How we translate that into an action plan in our world of neuroimmune disease, I don't know.
But I appreciate you starting the dialog!
Hi Samuel, Machiavelli was a staunch republican who believed in democracy. The Prince was a job resume.
ReplyDeleteOne of the political rules was that appearance matter more than substance - so you are spot on in saying that the strategy is to make it look like there is not a problem. One in two hundred and fifty people - no, thats not a problem. Thats probably thirty miilion world-wide, not the old figure of seventeen million. Bye, Alex
Hi Alex,
ReplyDelete"Besides this, one cannot by fair dealing, and without injury to others, satisfy the nobles, but you can satisfy the people, for their object is more righteous than that of the nobles, the latter wishing to oppress, while the former only desire not to be oppressed." -- Machiavelli
Yes, imagine: we have no real serious figures for Africa and most of Asia as far as I know.
We don't really have anything like ICC (the criteria) numbers for the West either.
Epidemiologists: you are needed.
Samuel
Good analysis.
ReplyDeleteThe second-tier denialists have less to lose in a crisis because they won't be the primary targets. But for the same reason, they also have less to lose by changing sides.
So, how to set the perception of crisis in motion when the reality of crisis has exited for decades? Change public opinion. But that's easier said than done. Members of the healthy public have their own lives to worry about, plus untold other outrages completing for their time every day. This yields a microscopically short attention span.
Is there a more direct way to spark the concern of second-tier denialists? Can a crisis be a crisis without public outrage?
Good questions. I think public outrage will help and will happen, but it might not be necessary to get us started. Some princes have reasonable foresight and it is a snowball effect.
ReplyDeleteI hope others will comment here with ideas.
I will post an idea soon.
Alex,
ReplyDeleteMany of us have been using 17 million in order to be conservative. I think it was referred to in Lombardi et al. 2009.
I'm partly aware of its derivation, but not enough to adjust it.
An update would be great, if you have anything (whether reasoning, facts, or references) we can use reasonably conservatively!
It would also be great to have good estimates for the growth rate.
Hi ShouldaBeenShawn,
ReplyDeleteThank you for your comment.
Often when I post something I wonder if it contributes to our goals. Comments like yours help me gauge whether my posts are making a potential difference and encourage me greatly.
Samuel
I agree that these mechanisms exist and are actively used by some to work against solving the riddle of our disease. Yet, I think the reality is that the resistance to proper research in ME/CFS is much more passive, stemming from the inherent (human) biases and prejudices. Simply expressed I guess many think "This disease is all woo, and anybody so stupid trying to do real research is woo too." and these people aren't critical to their own position and simply don't have a proper challenge to their prejudice and bias – with a emphasis on proper. Properly challenging them, that is the problem. But then again unless we have, a ton of biomedical result it will be impossible to it. And even then, they will be those who discard it as "not enough" and "not proper" enough.
ReplyDelete"A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it."
(Thomas Kuhn on paradigm shifts)
On a brighter note, Ian Lipkin will start doing research in ME/CFS. He looks like the guy who actually wants and who actually could solve it.
As a footnote: The critical path is the funding for biomedical research. We need more biomedical research, that's were the pressure has to be. The rest (medical textbooks, the perception of our illness, and so on) will follow once we have more data. All those like Alan Light, Nancy Klimas, Ian Lipkin, the Norwegians, and so on need to get funding.
ReplyDeleteHi Samuel, the world just officially became a place with 7 billion people. Conservative estimates, based on old CFS prevalence data, put CFS at about 0.2%. More commonly 0.4% is quoted. Some have said 0.7% but that is probably too high to cover ME and includes some misdiagnosis - CFS prevalence rates are not reliable, particular with reference to ME. Rediculous claims of several percent are from rampant misdiagnosis, using either Oxford or the Reeves empiric definition.
ReplyDeleteAt 0.2% we have 14 million.
At 0.4% we have 28 million.
At 0.7% we have 49 million.
Of course some of this will be misdiagnosis, but then its fair to say that these figure probably don't pick up everyone. So I put a probable ME population of a little under 30 million.
There is no reliable data for growth rates. I suspect the only people who have a clue are the insurance companies, and they aren't about to reveal it.
If we wanted to believe some of the rampant hype from conflating idiopathic chronic fatigue with ME, then the figure at 2.5% would be 175 million. I don't believe it.
Bye
Alex
Hi Alex,
ReplyDeleteI of course agree with you that we shouldn't believe 2.5% for ME, yet there are 2.5% who are at risk for being discriminated against on the basis of being given a CFS or ME (or CSSD or whatever) label.
By solving ME's political problems, we can also help 145 million ICF patients (or more; that figure was derived by subtracting 30m from 175m, but the groups may not totally overlap) who currently may not be getting appropriate medical tests and interventions (many of whom may have either totally treatable or partially treatable conditions).
bye, willow
HEY Samuel - I am a sufferer in the first real percentage - became ill the first time in 1980 and the second, and latest, and unlikely to be anything but present time - in 1991. I was diagnosed in 1994 and the doctor who diagnosed me said "Don't tell anyone what you have as it may compromise your ability to claim your permanent disability". Seriously? This is the reaction most doctors have had - don't call it me/cfs or I'll send you to be evaluated. The evaluations are always the same - you're sick, but we don't know how or why. But DO NOT call it cfs or me, as either will be reason enough to declare you not sick, but psychiatric. To label these people princes in any imagining is a stretch, but you do it so well - thanks.
ReplyDelete