Wednesday, June 8, 2011

Severity

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.

Nondenialist influentials

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.

Why severity?

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.

Let's be accurate and not shy. Emphasizing severity can take the form of literate comments in journals, letters to Obama, letters to editors, creative marketing, blogs, or anything else. More importantly, it can be a guide to all activity on the disease.

There's more.

Number of signs, symptoms, and diseases

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.

Summary

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.

Samuel

Notes

I would like to thank my reviewers.

Footnotes:

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.

11 comments :

  1. Thank you Samuel, the quote from Dr Cheney would give you goosebumps.

    Regarding severity, my colleague and I both have FM and probably ME, we live in a benign medical neglect country, and a specialist told her that they don't like the 'ME' word, so who knows what we have. We have worked together for 10 years and she is on medical leave for the last 6 months.

    We always say that if everyone woke up feeling as we do and had to get through the day our place of work would be empty. No one gets the severity.

    I had this illness before her and she now says she doesn't understand how I worked so long, she was always sympathetic before, now she has it she says she really had no idea and could never have imagined it.

    You are right, this is the crux of it.

    ReplyDelete
  2. You want useful severity odds?? Try these on for size

    Odds of becoming paralyzed if you contract polio
    1:200

    Odds of becoming bed/home/chair bound if you contract M.E.
    1:4

    ReplyDelete
  3. When trying to get them to understand urgency, I usually combine severity with the fact that it hits teenagers hard.

    Siobhan - don't like them odds, but that's a great statistic. I plan to use it. Thanks!

    ReplyDelete
  4. My sense is that some who acquiesce to delay are not denialists. They just don't get severity.

    True. Not all unbelievers are denialists. Sometimes they make assumptions based on the stupid name or on what other people have said, but they're open to changing their minds when somebody gives them real information.

    Severity is the way to reach these people.

    ReplyDelete
  5. Ok a few more odds

    Chances of coming down with Non-Hodgkins type lymphoma if you're a member of the general population 1: 5,000

    Chances if you have ME: 1:20

    ReplyDelete
  6. holy smokes - i go 20 years unable to find people who will understand why agitation is necessary - now there's a bunch of us. Samuel - i'm following and i'm thinking about all of it, with all the scraps or my intellect left. thanks for laying it out so beautifully. you and siobhan - wonderful points, all of them. the statistics are truly horrifying, and i'd like to share this discussion, because that's what it's turning into.

    ReplyDelete
  7. It's amazing how much more weight that stats have when you take them out of a percentage sort of expression.

    The average person looks at 5% and thinks "oh, that's not so many"

    You translate that to 1:20 and it become "HOLY COW!!!"

    ReplyDelete
  8. True. But "that disease" was ME. We now have CFS. CFS has caused the trivialization and misunderstandings. And severity alone is not enough. Mental illness can be "serious and disabling" (the famous buzzwords to make patients feel better. ME/CFS is the most dangerous of all. It does nothing to clarify and only buries us deeper in the CFS rubble.

    ReplyDelete
  9. greetings samuel & all here,
    U !! have hit the 'nail on the head' with the word "Severity"
    i have been sick 25 yrs+(& xmrv+)
    i..now, can been on the computer-sm amounts.
    thank u for writing this.
    almost a yr ago, one of my ssi caseworkers rec. me to "palliative care".
    (before this & still NOW, my drs know 'nothing' about the extremely "Severity" of these diseases)
    this 'awesome dr' came out for avaluation, and he said " u may have a year to live-we have had 3 patients before u,die" (take in mind it was said w/ so much compassion,& i have NO fear of dying,& i had know it myself for awhile) yes..the awesome dr who knew the 'real deal ' about these diseases, left & went to a teaching hospital to teach:( bummer for me-us, but atleast he's 'teaching' drs !
    Blessing's to all...& i will see u now & then.
    marie moore

    ReplyDelete
  10. Excellent post - agree wholeheartedly.

    Perhaps we need to ask our doctors to start using a basic checklist of very simple nature, similar to what is on the SSDI forms - this would also assist us in the seemingly futile quest for disability.
    "What can you do?" kind of questions like:
    "hours out of bed and out of supine position?"
    "prepare your own meals?"
    "sweep the floor?"
    "grocery shop - how often/how long?"
    " PEM time after grocery shopping?"
    "watch TV or use computer - how long?" (often very short times due to migraines - demonstrates we're not just laying around on the couch watching cable all day)

    Even sympathetic & understanding doctors may be shocked by the results of a simple checklist like this. Then of course a detailed symptom checklist is needed - my LLMD has used one at least a decade.

    Perhaps I've given myself an idea for my next blog post, but you're more than welcome to use it, too!
    Thank you!

    Ash

    ReplyDelete

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