An experienced physician described the disease like this.
The worst cases have both an MS-like and an AIDS-like clinical appearance. We have lost five cases in the last six months. The most difficult thing to treat is the severe pain. Half have abnormal MRI scans. 80% have abnormal SPECT scans…. Most have abnormal neurological examination. 40% have impaired cutaneous skin test responses to multiple antigens. Most have evidence of T-cell activation. 80% have evidence of an up-regulated 2-5A antiviral pathway…. We admit regularly to hospital with an inability to care for self. — Testimony before the FDA Scientific Advisory Committee1
That was in 1993. To this day, only a few researchers and physicians are aware that the disease exists.
There are approximately 17 million sufferers, a significant proportion of whom are bedridden or housebound.
I think there's something that nondenialist influential people — bystander scientists, for example — need to know, and that thing is severity.
"Nondenialist influential people" is a mouthful, but these are latent allies. It's a good audience to aim for.
As usual, many things are critical. People need to know science, politics, history, medicine, the whole thing. But focus keeps us from diluting a message.
Most of us recognize this, whether it's selling toothpaste or fighting for life, which is what we are doing. Focus on one thing and hammer it. Fit it to the audience and drop the glossy shine. This disease is severe.
There is no point persuading denialists. The only thing they can be persuaded of is their inability to delay without personal consequences. The people to persuade of the facts are nondenialist influentials.
These comments apply to other audiences also. Maybe your doctor or your cousin can be educated. I'm only focusing on the influential ones because I want to make sure they aren't left out.
Awareness is only a part of advocacy. But we have to do everything. There will never be a waiting period. Not for the rest of our likely short lives and certainly not during this critical period of history. The turning point is now.
Severity ties it together.
Without the truth about severity, nothing else matters. Until people know it, the corruption and history and everything else has no real importance.
Scientists who get severity get the importance of research. Physicians who get it take people seriously. The public and carers and employers and family and friends and the press and others cause less harm and orient better.
Mild and prodromal sufferers, one of our reserve armies, begin to understand what will very believably happen to them (and get involved). Denialists more clearly perceive consequences to themselves (and backpedal).
Pseudoskeptics pause their jeers (to soften the written record). Bigots don't find the permission or reception they need (and shut up).2
Transmissibility becomes vital notably in proportion to severity. Who cares about the blood supply if it is not severe? Likewise with pandemic status.
With severity, the disreputable name makes the organization that coined it a laughingstock. Severity creates urgency for a name that will never be used for anything else. We don't have a name of our own — severity affords this fundamental dignity. It is a scientific necessity.
Politics becomes clearer. History starker. Scandals larger. Human rights urgent. Justice inexorable. Activism appealing. Journalism serious. Research imperative. Clinical trials an emergency necessity. Delay becomes intolerable.
Without severity, none of the above matters. With severity, bedridden sufferers get noticed as existing.
It-could-happen-to-me becomes immediate. Averting your eyes will not ward anything off. Sympathetic magic fails too. Cooties fails. Denigration fails. Wishful thinking too. Hope is not a strategy. With severity, cognitive dissonance prods rational action and sooner.
With severity, the cohort deception stabilizes. No longer will abstracts fail to mention what definition is used. It becomes not merely intolerable, but openly monstrous, that healthy people are discussed in the same breath as people with an AIDS-like, MS-like disease. No longer will the difference be overlooked as if it couldn't possibly matter.
Tiredness and a sore throat, you say? I'll show you AIDS, MS, lupus, and in many cases all of those combined and you will never forget it and your children will never forget it and their children will never forget it.
With severity, denialist definitions become corroborated written criminal confessions.
Picking the wrong side becomes career-destroying. Picking the right side can set you for life.
Scientist citizen human beings join the good guys and ask what they can do to help.
A sense of urgency, which this global crisis is screaming for, demands a brutally honest apprehension of the severity of the disease.
The gap between reality and perception is so large that it wouldn't be considered believable in a novel. With severity, we close that gap.
Bystanders, including scientists and influential citizens, make a difference when they are informed. If they are not buying delay, it becomes a lot harder to sell it. Severity is the key to this.
My sense is that some who acquiesce to delay are not denialists. They just don't get severity.
With one aspect of severity in particular, namely the large number and variety of signs, symptoms, and diseases that severe sufferers experience, a giant volcano of bogosity fizzles out.
Theories that can explain all facts belong at top priority.
If your theory cannot explain all facts, then it fails at the gate. That misdirection has been a thorn in our side and it will stop. Severity is critical here also.
To me, severity is the critical element in awareness for the foreseeable future. I think we need to drive it hard.
As always, I look forward to your comments.
I would like to thank my reviewers.
1 On 18th February 1993 by Dr. Paul Cheney, Professor of Medicine at Capital University; Medical Director of the Cheney Clinic (Hooper et al. 2001).
2 The bigotry is no more tolerable than a racist using the "N" word and good people know that. Ran into it myself recently on a mailing list. The only contact with the normal outside world I have, related to exporting this blog, and one that takes everything I have to be on.