Sunday, December 23, 2012

The FAQ that should never be necessary

Here is a quote:

I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long.

There are thousands of other quotes that could be used instead.

FAQ

Here is a FAQ. It should never be necessary.

I do not like posting it. I might remove it. You may still repost this post elsewhere verbatim if you want (even if I don't remove it).

She was exaggerating or faking

She died.

But it was "secondary gain"!

Dead.

But it was "catastrophizing"!

Dead.

But it was "illness beliefs"!

Dead.

But it was "deconditioning"!

Have you ever gotten out of shape? Did you die?

But it was "laziness"!

Dead.

But it was "ambition"!

Dead.

But it was "a disorder of effort perception"!

Dead.

But it was "characterized by exertion issues"!

Dead.

But it was "push / crash cycle"!

Dead.

But "treadmill studies will get to the bottom of it"!

Dead.1

But it is "characterized by fatigue, headaches, sleep disturbance and several other symptoms"

Describing a mild hangover helps you how?

=== But "the mild sufferers I know only have a few symptoms like that"!

Do they switch diseases when they get sicker?

But it was "playing the sick role after being sick"!

Dead.

But it was "whining"!

Dead.

But it was "vague"!

Dead.

But it was "subjective"!

Dead.

But it was "flakiness"!

Dead.

But "there are no abnormalities"!

Dead.

But it was "mass delusion"!

Dead.

But "she only thought she was sick"!

Dead.

But "it isn't SERIOUS"!

Dead.

But "let's reserve judgement until there is more evidence"!

Dead.

But it was "anxiety"!

Dead.

But it was "FIN-DE-SIECLE angst"!

What calendar system do you use?

But it was "SUBCONSCIOUS UNDERMINING of her body's systems"!

That is more possible than witchcraft how?

But it was "interoception"!

Dead.

But it was "reward insensitivity"!

Dead.

But it was "her personality"!

Dead.

But it was "[50 synonyms]"!

Synonyms help you how?

But it was "EXQUISITELY SYMBOLIZING internal conflict"!

Synonym. Dead.

But it was "CONVERSION of mental problems into symptoms"!

Synonym. Dead.

But it was "somatization"!

Synonym. Dead.

But it was "somatic"!

Deliberately misleading synonyms help you how?

But it was "maladaptive"!

Misleading. Dead.

But it was "unexplained"!

Misleading. Dead.

But it was "functional"!

Misleading. Dead.

But it was "dysfunctional"!

As opposed to "functional"?

But it was "hysteria"!

Misogynistic synonyms help you how?

But it was "a woman's body language of rebellion against the patriarchy"!

Feminist synonyms help you how?

But it "fits in the category of women's diseases"!

Men and children are women how?

But it was "like those fainting couches I once heard about"!

Dead.

But it was a "fatiguing syndrome"!

Does AIDS equal a "blotchy skin syndrome"?

But it was a "psychiatric COMPONENT"!

Does AIDS equal HIV plus a "psychiatric COMPONENT"?

But it was "being weak-willed"!

Do people who die from AIDS fail to "wish hard enough"?

But "psychiatry can HELP THEM COPE"!

Is that how HIV got discovered?

But it was all of those "COMBINED IN A MYSTERIOUS WAY"!

Combining makes them possible how?

But it was "NEURO-psychiatric"!

Does NEURO-woo trump regular woo?

But "neuropsychiatry is short-term memory measurements and the like"!

Dead.

But "Adding psychiatry makes my theory better"!

Occam's razor is dull why?

But it was "MIND-BODY MYSTERY because people can walk on coals"!

Physics, but MAGIC SKIN would explain her disease how?

But "when I get nervous I sweat"!

Nervous sweating is a disease how? Do you die?

But "it COULD happen"!

Natural selection does not weed that out how?

=== But "it could happen to MILD SUFFERERS at least"!

Do they switch diseases when they get sicker?

But "those at the EARLY STAGES could do it"!

Do they switch diseases when they get sicker?

But "those WITHOUT TOO MANY SYMPTOMS YET could do it"!

ATTENTION NOW: Do they switch diseases when they get sicker?

But "it could happen SOMEHOW"!

1000 dollars said you can't even do it to your arm.

But "I notice the pattern"!

Do you notice the face on Mars?

But "I JUST KNOW it's psychiatric"!

H. pylori. And hundreds of others.

But "it's different this time"!

Read the above linked post carefully the whole way through.

But "it is a special category that challenges medical thinking"!

Read it again. Turn off the television.

But "I HAVE A DETAILED THEORY"!

"And by those impressions the organs are affected in proportion as the inner perceptions are affected in the way which has been shown: that the devil can draw out some image retained in a faculty corresponding to one of the senses; as he draws from the memory, which is in the back part of the head, an image of a horse, and locally moves that phantasm to the middle part of the head, where are the cells of imaginative power; and finally to the sense of reason, which is in the front of the head."
Hammer of Witches, 1486

But "insurance companies and certain psychiatrists say it's psychiatric"!

Do you ask Inquisitors about witches?

But "they are experts"!

"If we can't think for ourselves, if we're unwilling to question authority, then we're just putty in the hands of those in power. But if the citizens are educated and form their own opinions, then those in power work for us. In every country, we should be teaching our children the scientific method and the reasons for a Bill of Rights. With it comes a certain decency, humility and community spirit. In the demon-haunted world that we inhabit by virtue of being human, this may be all that stands between us and the enveloping darkness."
— Carl Sagan

But "if they would only BELIEVE IN IT, it would help them"!

Did BELIEVING IN WITCHCRAFT make it true?

But "it makes a GREAT STORY"!

So did witchcraft.

But "it fills a hole in my heart where I long for a sense of meaning"!

Volunteer.

=== But "I really want to have control over my destiny using my mind"!

You have control by thinking rationally.

But "it is a mystery and it is wrong to do science on it"!

It is an ordinary serious disease obscured by politics.

But "it is fun to speculate"!

No well-defined research being funded on her disease. Dead.

SHE DIDN'T HAVE THE DISEASE!

Show us what she had.

But I don't know!

Here is the most recent and unbiased definition.2

But that isn't the TRUE disease where people are just tired!

Do only TRUE Scotsmen deserve research?

=== But mild sufferers do not die!

She progressed from mild.

But mild sufferers are just tired!

Do they switch diseases when they get sicker?

=== But it took her forever to get sicker!

Dying at age 30 is forever how?

They have too many signs and symptoms

That makes the disease less serious how?

They do bad things

She was a good person who did not deserve to suffer and die.

She did not exist

Her name was Emily Collingridge. Verify.

She is the only person who died

A large number of people have died and are dying.

Nothing can be done

Like HAART for HIV/AIDS?

But there is no money!

For a pandemic? Dead.

They "damage their own cause by being so loud"!

Did ACT-UP save lives or did they not?

Nobody knows about it so it's reasonable nothing is being done

You just said they were too loud.

I have another objection!

Would you use your objection against people who have AIDS?

Where is the salsa?

Anybody can get it. Including you.

Don't get hostile!

That's our line. It is called misopathy.

What do you need?

Commensurate biomedical research funding on root causes.

Conclusion

Posthumous thank you to Emily Collingridge for telling her story and for being open about her experiences.


End of FAQ.

Samuel

[Added later] P.S.

Most people don't realize this, but every question above (except the salsa one) represents a real-life accusation that has been made in published form.

Footnotes:

1

Please read More you than you for why mild sufferers desperately need scientists to stop focusing only on mild sufferers.

2

MEICC Primer (pdf) for physicians.

6 comments :

  1. Dead on right. Perfectly done, Samuel. Thank you for this.

    ReplyDelete

  2. dark dry and made me roar with laughter at the comebacks. but also very very serious. you are a great writer. have you sent it to the fda?

    take it you have seen the wessely and countess of mar letters going back and forth recently.

    there are some very hard and disturbing stories of torturous long and slow deaths. others who became ill very young have died very young too.

    we were shattered by a string of deaths in the uk reported over the last year.

    such young lives destroyed lives stolen. no first love no parties and sleep overs with friends.

    education is often denied and used as weapon for those in social services in uk usa and europe to take children from their families

    adults who are mildly ill need to take note of samuels words. this is your prognosis

    i started mildly ill. i know and see the progression of the illness in myself and others and deaths. it is time that those who are mild knew their prognosis. its long slow torture

    if you are mildly ill or moderate. take action now and join us in demanding that the fda approve ampligen. ME KILLS

    now is the time for action

    ReplyDelete
  3. Khaly and Anonymous (<- we have communicated; he/she is not totally anonymous, though I ask that commenters do sign),

    IMO we should live in a world where this post and your comments are like agreeing that genocide is bad or that 2 plus 2 equals 4. It is not something that should ever have to be agreed with in everyday parlance, because it should not need justifying in a post-Enlightenment civilization. And so it SHOULD be superfluous to agree with it.

    Yet Emily was thrown into the foul pit of misopathy, with the most extreme irrationality, and avarice, and brutality, with systemically instilled ignorance, and global kitty genovese apathy (http://www.google.com/search?q=kitty+genovese), all coiled around together like snakes.

    As I wrote in Politics and rage, things that are not a matter for debate are being debated and lost. The basic worth of humans, the basic value of truth, the basic facts of natural reality. All at the cost of health, lives, and everything that has ever mattered.

    So thank you for your comments. It is possible that we are not stating (and agreeing with) the unstatably obvious enough. It is insulting to have to state the obvious, but there are times of darkness when it has to be done.

    Only with our serious effort -- which I want to include every reader of this post -- will this manifest and rapidly spreading nightmare end.

    It is too late for Emily, but there are millions of people who can be rescued beginning today.

    Those who are not already advocating seriously and with accurate knowledge, please drop one movie, one cup of coffee, one shopping trip, AND ACT UP.

    ReplyDelete
  4. Well done, Samuel, at least in my opinion as a patient for 42 years so far. I've had friends die of this.
    Roy

    ReplyDelete

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