Emily's disease started out mildly. Emily died at age 30.
Here is Emily telling us her story:
My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. … This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it.
— Emily Collingridge
There is still no research into its most severe form. There is still no support.
However, the key points for this article are these:
Emily's disease started out mildly. Emily died at age 30.
If we understand Emily's story, then we understand:
- The fact that progressive nature exists (hoping that you will not get sicker will not protect you)
- The fact that early-stage sufferers of the same disease exist (dissing them by assuming with insufficient evidence that they have a different disease will not make them advocate better)
- The fact that late-stage sufferers exist (science needs them)
- The fact that deaths exist (the world does not know this)
If we are rational, then we understand those things. If we are serious, then we incorporate them into our beings.
Most sufferers and most advocates have not done so.
To me, it is the acknowledgement of other people that makes a real movement. By "real" I mean effective.
That should be good enough reason.
But that's not all:
- Emily did not switch diseases when she got sicker
The consequences are profound:
Explaining only early-stage does not explain anything. Advocating only early-stage does not advocate anything. Studying only early-stage does not study anything.1
Those actions do not help early-stage sufferers. They kill them. Emily's disease began mildly.
The things we do not understand
When we understand those things, I believe that we will have a real movement.
We will not survive if we only fight for people who are exactly like ourselves in degree of disease progression.
Here are examples. They are just examples (i.e. not discussion points). My point in this article is larger.
The following is a random sample of the consequences of failing to understand the above listed things at a visceral level.
If we do not understand those things, then we do not understand why it is a scandal that major sample banks include zero housebound or bedridden. Real scientists test hypotheses against relevant facts.
And we do not understand how counterproductive it is to tell mild sufferers they don't have the disease when we don't know. Doing so sends them to the Stockholmers for soothing indoctrination. Early-stage sufferers will learn the opposite of the truth about their own disease.
And we ignore those who are very severe. They are not online. "Out of sight, out of mind" is for plumbing and wires, not people.
And we do not understand why it is a scandal that a professional organization's primer includes exercise recommendations for severe sufferers, and claims that opportunistic infections are not a problem.2 "It works for me" is not how you evaluate a primer.
And we do not understand the need for nondenialist definitions. "I don't match it" is not how you reject a research definition.
And we do not understand why an amphetamine is not a sensible priority for drug research or approval.
And we do not understand how you have to be mild to even travel to a treadmill study, or how that could matter.
And we perpetuate pointless schisms on etiology theories. By Samuel's Law (any explanation must fit the facts) your explanation fails if it only fits your severity level. Almost all theories were never possible in the first place.
And we do not understand how urgently to advocate.
Selfish reason: you can progress to severe tomorrow.
Rational reason: the "I don't care about anybody else" attitude will fail to further the movement.
Stone soup reason: somebody else will do it? I have a bridge to sell you.
Practical reason: you can advocate much more. Leaving it up to people more severe than yourself is … tacky.
Enlightened reason: other people count.
Do we need a reason to do the right thing?
The things ACT-UP understood
ACT-UP understood that early-stage and late-stage have the same disease. We do not.
ACT-UP had massive demonstrations. We never will until we understand this.
ACT-UP won. We will not until we take action.
When a large enough proportion of our early-stage sufferers understand the nature of their own disease, we will have a real movement.
When we educate the teachable ones accurately and warmly welcome them, we enable that to happen.
How bad do things have to get?
How bad do things have to get before we become a movement?
That isn't hyperbole. It is not a rhetorical question. I am literally asking you a sober question.
When will we strictly educate and warmly welcome teachable mild sufferers and make a real movement?
When will mild sufferers stop calling themselves severe?
When will they stop having floor-scrapingly deferential meetings with authorities who will without exception never cooperate even in the year 2200 unless forced?
When will they become activists? Proud ones. Informed ones. Enlightened ones. "Advocacy" is for wimps.
Here is what I believe
I believe that the lives of all sufferers (and a whole lot of people who are not yet sick) depend on what mild sufferers do.
I will explain more in future posts.
Until a critical proportion of mild sufferers understands viscerally that studying only mild sufferers kills mild sufferers, and understands viscerally the concept of doing the right thing, they will at best spend their time watching movies, bickering on forums, and clicking "like" on social networks instead of making advocacy — activism — the highest priority in their lives.
Without that, all of those early-stage sufferers will die before any meaningful treatment becomes widely available.
Millions will get sicker.
They haven't incorporated that into their beings yet.
So I ask you
So I ask you:
Why are we allowing mild sufferers to die?
2 Caution: there are two unrelated and different documents with "primer" in the name. They also both have "international" someplace. The only primer-like document that I will ever link to at this time is the International Consensus Primer (pdf). It is based on the MEICC. Somebody told me it fails to include a good anesthesia protocol; I cannot check at this time. I can tell you for certain that the professional organization's primer will do serious harm.