Friday, April 20, 2012

Misopathy

Why do we not have a word for the politics that we experience?

[Note: another overview of misopathy is here: Why some diseases are wronged.]

A thing that needs a name

We face refusal of biomedical research, refusal of medical treatments, and refusal to acknowledge the very existence of serious diseases.

We are openly calumniated in the press.


Why do we not have a word for it?

Absence

Most physicians and scientists are not aware of disease progression. They are not aware that severe sufferers exist and are numerous and have breadth of facts. They are not aware of the many deaths.

Most hospitals and doctors do not have any idea how to treat us — and cause significant harm.

No studies are performed on tube-fed, bedridden, and housebound people.


Why do we not have a word for it?

Labels

We are labeled into nothingness. We are not even allowed that most basic and scientifically critical dignity: a name that is not used for anything else. It is reminiscent of being called "boy" or "girl".


Why do we not have a word for it?

Politics

We are banned from giving blood and told it is for our own good (not because there might be something in our blood).1 Then we discover that we were quietly banned from donating organs after death.

Medical professor — stopped from teaching at medical schools. Specialist physician — stopped from practicing. Biomedical scientist — stopped from investigating rigorously.


Why do we not have a word for it?

Disappearance

There is bogus research that is reminiscent of racist research of the past, pretending to be science. There is research just like smokescreen tobacco industry research.

Our biomedical limitations have been specifically targeted by officials for coercive medieval anti-treatments that have left people significantly and permanently worse.

We are witnessing systematic attempts, using diagnostic standards, funding allocation, and public relations, to extinguish all meaningful recognition of a serious pandemic disease. (If you can create several diseases, then you can destroy several diseases.)


Why do we not have a word for it?

Description

The above cannot be both adequately and specifically described by "mistakes were made" or "denigration" or "persecution". Not "failing to supply accommodations". Not "failing to honor differences".


This is a thing in its own right. It is coherent, stable, and distinct.

Yet there is no widely-used word that connotes and demands "STOP THE STOPPING OF SCIENCE".

Racism as a good model

People understand racism. They understand that it is a mixture of politics and bigotry. They understand that it is serious. They know it is a thing in its own right.


That is my aim, to have a word and to instill a concept.

People need to understand this thing they have never heard about.

Larger than one disease

Today, there are about 10, maybe a few more, significantly persecuted diseases, many of them serious. Over time, diseases are added or drop off. This has happened for hundreds of years.

At the level of a single person, aspects of the phenomenon occur in hundreds of diseases.

At the level of diseases

At the level of diseases, I am primarily talking about ones that are inconvenient for authorities and anybody else.

Seriously misattributed, denigrated, mischaracterized diseases. I will talk more about this in a future post.

Scapegoated diseases. Diseases nobody wants to care about. Diseases nobody wants to pay for. Diseases that are too profitable being not-researched and Potemkin-"researched". Diseases whose true nature exposes official incompetence.

A new word

Misopathy

I propose "misopathy" (miss AH pah thee). Miso- from the Greek as in "misanthropy", and -pathy as in "pathology".

Why I like "misopathy"

  1. It is unused (2 Google hits, one from an 1886 scan (most likely an OCR error) and one from a 2012 made-up-on-the-spot instance that would be better with an existing word)
  2. It is reasonably accurate and short
  3. Other candidates are already used for other purposes or are less appealing. (I have more on candidates and considerations.)
  4. It is fairly easy to pronounce and spell in English
  5. It probably transliterates or translates adequately into major languages
  6. It probably pronounces adequately in major languages
  7. Miso- and -pathy are from the same language
  8. It feels right to me

The gravity of the word

Some words you don't use lightly.

What I want

I want the entire world to have the concept and a way to name it. Just that simple thing.

Conclusion

If it feels like a good word for the purpose, try it. I believe there is power in a word.

At first it will be a little awkward because you have to explain. But that's the point, isn't it?

Samuel

Footnotes:

1

We strongly supported a ban to protect blood transfusion recipients from getting the disease.

11 comments :

  1. Absolutely there is a need for a "word". Good post, Samuel!

    ReplyDelete
  2. Misopathy. I have to think about that one. It's a good idea. As usual, you have written a thoughtful essay about an important problem. Misopathy.

    When I started reading your essay, I found myself thinking about the words "discrimination," "propaganda," and "censorship." That's all going on, but the word discrimination seems to have lost its power; to the degree the words propaganda and censorship - while accurate here - are so associated with the Third Reich, no one believes it. There's that thing about having crossed the line when you bring Nazis into the conversation. But what else do you call the deliberate dissemination of disinformation by one of the most powerful governments on earth? Propaganda and censorship.

    Then earlier today I read Sue Marsh's Diary of a Benefits Scrounger - the stories of the cruel treatment in a mental hospital of patients with Crohn's Disease was horrifying - and the only phrase I had to deal with it in my head was "crimes against humanity." So I'm back there again.

    Do we have to come up with a new word, or should we look for ways to use the ones we have to break through, somehow, that invisible wall between us and the rest of the world? That's the problem. I don't think that we lack a word. The problem is they just won't listen.

    Sue's blog is here: http://diaryofabenefitscrounger.blogspot.co.uk/2012/04/its-all-in-your-head.html

    ReplyDelete
  3. "BRAVO" on another great piece!

    Neither CFIDS nor AIDS are diseases. A syndrome is a syndrome.

    The challenge is this: to implode the ICD-Codes for “CFIDS” and “AIDS.” Only diseases belong in the “International Classification of DISEASES,” and only diseases should get funded.

    This would be a huge first step in taking politics out of science/medicine, and ultimately saving humanity.

    My word = "CFSgate."

    ReplyDelete
  4. The closest word already in use, I think, is "ableism."

    But "ableism" lacks bite. It sounds cutely PC. It's too broad, covering everything from discrimination to simply forgetting that disabled people exist until reminded.

    Misopathy is focused. It signifies intention.

    I say we start using it.

    ReplyDelete
  5. "Misopathy" is excellent. Alternatives I have considered include "manslaughter" and "negligent homicide." However, "misopathy" sounds classier and seems more apt for situations biological and medical.

    ReplyDelete
  6. ANother great blog Samuel. Again you have us thinking about some of the bigger picture critical issues that come with having this disease.

    Many thanks

    ReplyDelete
  7. I asked some outsider friends, and have to share my favorite two responses. First, a serious response from an economist: institutionalized violence. Period. Okay, the other two responses:

    1. "Ice-flow-ism" - self-explanatory.

    2. COMFPOBSI Syndrome - for "crusty old malpracticing farts paid off by special interests.". Says it all.

    ReplyDelete
  8. Ice floe-ism has some potential, but maybe in a different form. Ice floe medicine. Ice floe healthcare.

    COMFPOBSI: accurate, but too hard to say. :)

    I still like misopathy.

    ReplyDelete
  9. Hi all,

    Thank you for your comments. More later. Please keep commenting.

    ===

    I believe that if we don't make it a cinch for people to understand and do the right thing, then many people will do the wrong thing.

    When we use a word for something that is specific to that thing, it makes it much more possible for massive numbers of people to understand, talk about, and do the right thing.

    I don't just want us to have a word in the dictionary; I want people to be using it everywhere it applies. I want it in newspapers. I want it in criminal trials. I want it to create meaningful rapid change -- and using it widely and abundantly is the only way to make it do that.

    I believe that without action on our part, nothing will change.

    I hope that you will join me.

    ReplyDelete
  10. The word is banking and the criminals are bankers.

    in the UK we spell both of those words with a 'f'ng' followed by a space and drop the 'b' for a 'w' at the front.

    fly

    ReplyDelete
  11. Aids is not a disease it is a syndrome...Chronic Fatigue is not a disease it is a syndrome...then how the hell did we arrive at and accept 'addiction' as a disease...what do we call that disease when someone by choice decides to lift a crack pipe to their mouth...why are semantics so freely used for some things and not for others? CFS has 5000 studies behind it, I could give a fig about the semantics...I just want recognition, validaton, and support...I want them to stop calling me crazy, because their pathology is making me crazy!

    ReplyDelete

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