Monday, March 12, 2012

Characterization and the unaware early-stage sufferer

Here is an experiment using Google.

  1. First, search for "AIDS is characterized by" in quotes. Or you can try HIV/AIDS.
  2. Next, search for "X is characterized by" in quotes. In place of X, put any name for The Pandemic that you want.

There are other ways, but this is good enough to make the point.

Fact and twists

One interesting fact is that everybody's results are different. Google likes to personalize for you, so I can't predict exactly what you will see.

There are twists. For example, AIDS has a leg up in that some results will speak of a somewhat official biomarker; those results are all about the same. You might want to leave that out to compare apples with apples.

Other than that, the twists are not critical. I just want to let you explore.


Here is what I noticed:

AIDS

AIDS gets "characterized by" its severe sufferers.

You will not get sentences that essentially mean "is characterized by a few or no symptoms for a long period of time", even though that's true for many.


AIDS is a serious disease and it is correctly characterized by its severe sufferers.

The Pandemic

In contrast, The Pandemic gets "characterized by" — arrantly mischaracterized by — its mild sufferers (when the characterizations manage to avoid complete falsehoods).

You will not get sentences that essentially mean "is characterized by immune abnormalities and opportunistic infections, and affects many parts of the body" even though that's true for many.


The Pandemic is a serious disease and it is incorrectly mischaracterized by its mild sufferers — at best.

In surrounding text, you will usually not get descriptions that say things like "there are many sufferers who have an extremely large number of symptoms and diseases, millions bedridden and housebound, some fed with tubes, many in darkened rooms and wearing earplugs 24/7, many requiring sheets held over their bodies to avoid touching the skin, and many who died".

Not outliers

Severe sufferers are not outliers or flukes. Characterizing can mean portraying; it is simply inaccurate to portray the mildest sufferers only.

The general public wants to know, "Is this a serious disease?" The mischaracterization says no. It wants to know, "Could my sister have this?" The mischaracterization says yes for too many sisters who don't have it and no for too many who do.

How would you like to have full-blown AIDS then be told every time that your disease "is characterized by blotchy skin"?

Calling it "debilitating blotchy skin" does not improve matters. It's just wrong. (And "debilitate" does not mean what some people think it means.)

Resemblance

I wonder how many sufferers know this:

The typical characterization bears no resemblance to the severe disease.

Yet millions of mild sufferers have gone on to become severe.

Even if we removed the false attributions and replaced the tepid, vague, wave-of-the-hand elements with narrower terms, far too many severe sufferers have far too many other critical facts for any similar list to evoke their presentations.

The typical characterization does not describe the disease

The typical characterization does not describe the disease.

The gestalt is wrong, the facts are wrong, and the descriptions are wrong. Most importantly, it is scientifically inaccurate.

Distinctive

Characterization can mean listing things that are distinctive. To characterize by mild sufferers is to leave out the things that a scientist needs to know in order to inspire good hypotheses and blow bad hypotheses out of the water.

See Samuel's razor (blog label).

It is to tell scientists to not bother studying the disease, because it has no distinctive marks. It is to place in the mind of the reader or listener the wrong facts.

It is to insinuate, "nonspecific and confusing". How many virologists want to spend time repairing cohorts?

Unprincipled

The list of symptoms that follows "is characterized by" in the case of The Pandemic is not principled. It is not even consistent. It's opinion based on selection bias and hearsay at best. "Is characterized by" is NOT based on scientific rigor.

It has everything to do with laziness, selection bias, PR Newswire, media contacts, pliable journals, conflict of interest, astronomical funding discrepancies, sufferers being too sick and too propagandized and too full of misplaced shame to fight for themselves, and raw ugly brutal bigotry. Yeah, fundamental attribution error and all that too.

Urgency

I didn't point this out when I first posted this article, but without severity, there is no urgency.

Why even the good guys?

It's unsurprising that a misopathized disease (with billions of dollars at stake) gets mischaracterized. But why do even the good guys do it?

Even the best scientists often just get the description out of the way in the intro so they can talk about the good stuff — virology or cytokines or whatever. They are not trying to actually list distinctive features, but merely to acquaint the reader. The cohort selection is described in a different part of the paper, and {breadth of facts} does not often figure in early-stage papers.

Even the best reporters typically seem to copy from some denialist definition, perhaps adding one or two things. They never explain multisystem, opportunistic infections, etc. or even point people to {MEICC}. I don't know why.

Now let's talk about mild sufferers

Mild sufferers either have the disease — the underlying pathophysiology — or they do not.

Not knowing for certain whether you have the disease does not mean you are halfway in between having it and not having it. Here:

If a woman is not sure whether she is pregnant, that does not make her half-pregnant. Better hope she has twins, if it does.

You are not half a sufferer. If you are not certain, then the only rational approach is to say that you might have the disease. And if you might have it, then it makes sense to pay attention to the true nature of the disease.


It's roughly HIV/AIDS-like in many respects and even the mildest and barely-symptomatic sufferer of it still has it (just as with mild HIV/AIDS sufferers).

This has consequences.

Underlying disease and downstream effects

One consequence is that scientists studying downstream effects will not protect you from becoming a severe sufferer.

Analogy: studying oral thrush isn't the same as studying HIV/AIDS.

This is true even if those "is characterized by" symptoms exactly match yours.

Scale

I think a lot of mild sufferers do not know this. A lot are aware, and a lot of Stockholmers don't want to know it, but I guess at millions who would want to know the facts but do not know them. They think the mischaracterizations are not all that bad.

They don't know that they have the same disease as severe sufferers. Maybe even more don't know the severe disease — their own disease in its progressed form — exists.

What do you think?

What would HIV/AIDS do?

If mild HIV/AIDS sufferers had their disease characterized (mischaracterized) by their mild symptoms, they would take to the streets, possibly within 24 hours.

Mild sufferers of that disease know that they have the same disease as severe sufferers.

Conclusion

Severe sufferers characterize the disease in much the same way that severe AIDS sufferers characterize that disease.

Now here is my point for mild sufferers:

When the world tells mild sufferers that they will not get sicker, which is what it does by mischaracterizing the disease using their mild symptoms, they are being mocked and patronized.

Mild sufferers have every reason to ACT UP and get in people's faces and dedicate their lives to advocacy just as mild HIV/AIDS sufferers did.

It worked for AIDS.

Perhaps the movement will make swift progress when massive numbers of currently-unaware mild sufferers internalize the fact that they have or might have the same disease as severe sufferers.

Samuel

17 comments :

  1. Well, the reality is that for most, this disease will progress slowly, as Dr. Bell (who clearly is not part of the establishment) noted:
    http://www.masscfids.org/resource-library/3/311
    and
    http://www.masscfids.org/resource-library/3/309
    and
    http://www.masscfids.org/videofiles/BellApril2011/Bell.html
    and
    http://www.masscfids.org/videofiles/BellApril2011/Bell%20Questions.html

    The pandemic is not HIV/AIDS, that is the crux.

    Not that I want to emulate that, but AIDS became a topic because the people were dropping dead like mad.

    The medical sciences (and many of the sufferers themselves!) can ignore it, because it progresses so slowly for most patients.

    What we need is a pitiless realistic portrayal of our disease. Without scandalization, without trivialization. We need to understand better and communicate more clearly to each other, to the medical community and to society at large what it means to have severe illness, to have mild illness.

    By the way: The chasm between some of mild and some of severe sufferers is mutual. Some vocal severe sufferers doubt that the mild sufferers have the same disease – basically repeating a position of the psychobabblers, that the mild sufferers have non-organic disease or some such. Some of the vocal severe sufferers do their best to alienate the mild sufferers.

    ReplyDelete
  2. What you describe is called "Will Rogers phenomenon" or "medical stage migration":

    One real-world example of the Will Rogers phenomenon is seen in the medical concept of stage migration. In medical stage migration, improved detection of illness leads to the movement of people from the set of healthy people to the set of unhealthy people.

    Because these people are not healthy, removing them from the set of healthy people increases the average lifespan of the healthy group. Likewise, the migrated people are healthier than the people already in the unhealthy set, so adding them raises the average lifespan of that group as well.

    ReplyDelete
  3. Hi Anonymous,

    Thanks for your comment.

    You helped me with an editorial decision. I changed "establishment" back to "world", which is not only more accurate and makes my point better, but is how I originally had it.

    A request for Anonymouses: Can you please use your name, or if you can't, then make up a consistent handle?

    That way we can know if you're the same Anonymous who wrote the Will Rogers comment or any other Anonymous comment.

    The options at present are Google account, OpenID, or Name/URL options. The last one lets you fill in your name.

    I allow the Anonymous option just in case it lets some people comment who can't comment for technical reasons. In that case, please sign at the bottom (and maybe let me know you're having trouble commenting).

    Thanks.

    ReplyDelete
  4. Sorry, both anonymous comments were mine. Some people in the patient community don't like what I have to say (and it sometimes wasn't nice what I said), so I rather stay anonymous.

    I fully understand your position on non-handle discussions (I hate it myself when it happens in other blogs), but it would distract from the points I wanted to make – as we surely would have some currently unresolvable differences of opinion in another pandemic related matter.

    But I chosen an pseudonym per your wish.

    ReplyDelete
  5. Excellent post, Samuel.

    In addition to severity, another factor that can be divisive is length of illness. Those who have suffered for decades sometimes pull rank on those who have suffered for mere years.

    AIDS activists experienced their share of dividers, too. What may be making it harder for us to turn the volume up to 11 the way they did? Division, boring survival as livingdead instead of dramatic swift deaths, having no agreed-upon name for The Pandemic, trivialization by the CDC and press and all, and not having a ready-made activist community whose well people contribute energy that we sick folks haven't got. Those are the first barriers that occur to me.

    And of course the more we spend our energy the sicker we become, so here we are, caught.

    I'll be making some noise in San Francisco on 12 May, if I can get out of bed. If I can't get out of bed I'll make and post a protest video instead.

    More events globally to be added soon at http://www.may12.org/

    Thanks for writing.
    Kassy

    ReplyDelete
  6. Thanks, Kassy.

    That is http://www.may12.org/

    Here is how I did that (if this works):

    <a href "http://www.may12.org/">http://www.may12.org/</a>=

    ReplyDelete
  7. Interesting post.

    If the ICC ME is adopted do you not think it will lead to more people with ME being diagnosed because the six month qualification will have been removed? It is hard to see how this new criteria will not pick-up for example those who suffer short-term symptoms.

    I am also reluctant to endorse the ICC ME entirely, when the criteria appear subjective. It is not enough for me as a patient to 'like' the criteria and consider it 'better' than anything we have now.

    It - as well as other diagnostic and research criteria - should include objective testing. But in the absence of biomarkers I still can't help but think that yet another set of criteria will do little to help, especially one that has yet to be properly critiqued by those who would be encouraged to use it.

    The apparent adoption of the ICC ME by Norway still seems rather 'odd'. Although I don't yet know if their research will use it or if it will be solely used by diagnosing clinicians. But either way the criteria do not seem to have received sufficient (adequate) 'testing' against existing criteria. And if it is only used by clinicians then it will still depend (in the absence of objective tests) on the clinicians ability to subjectively apply the criteria. And that is no different than exists currently.

    Also, it appears to me that in order to qualify for having this condition one needs to be correctly diagnosed in the first place, and I am not sure people who 'think' or 'might' have ME should be encouraged to do more than seek a confirmed diagnosis before they even consider themselves to have the same condition as 'severe' patients.

    It is totally different with HIV of course. You take a test and you have it confirmed. People with HIV are all effectively in the 'same boat' although - as you say - the extent of the symptoms can be marked. But, ideally, you can take drugs that help it from developing into full-blown AIDS. With my condition there is nothing that can prevent the fluctuation from 'severe' to 'moderate' to 'mild'. I remain - in general - uncomfortable with the comparison of HIV/AIDS to my condition for other reasons as well. I am not a believer in any retrovirus association - pending a scientific development of course.

    I would suggest a comparison with MS perhaps (although retroviral involvement there has been posited of course too) and MS has a biomarker, whilst a patient's life expectancy can be reduced, it does have the fluctuations I experience (as well as some of the similar symptoms), is largely untreatable and can result in very similar degrees of disability.

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  8. If I'm right in my conceptualization of the disease, then the idea that some mild sufferers have the disease and some do not is not exactly correct.

    Rather, what I think we have is a large group of people (25% of the population) who is biotoxin susceptible.

    The more exposures to any sort of biotoxin they have, the more that they will slowly fall into more severe CFS.

    Per Ritchie Shoemaker, these exposures could be to any sort of biotoxin -- toxic mold, Lyme, cyanobacteria, etc. Some are worse than others, but they all contribute to the progression of the illness.

    Of everyone who is biotoxin susceptible, only a subsegment will get enough exposures to acquire the mild illness. And of those people who get the mild illness, only a subsegment will get enough addition exposures to acquire the severe illness.

    If this conceptualization is correct, then the best thing that people with the mild version of the illness can do is to avoid getting further exposures.

    Of course, since they're not hearing from any CFS doctors or any other mainstream sources that biotoxins may be of relevance in this illness, they don't know to do that.

    This is unfortunate.

    Cordially,

    Lisa Petrison, Ph.D.

    lisapetrison at yahoo

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  9. Almost by definition, ME/CFS is an illness that is severe, by all standards one chooses to use. Even ME/CFS of the lowest level of severity to meet current definitions, is or can be highly disruptive to an individual's quality of life and function. There is no doubt in my mind that many cases of ME/CFS never make it into any diagnostic category initially, but may do so over the passage of time. The definitions available are specifically designed to exclude such 'milder' morbidity, even when those afflicted may have to contend with life's challenges in a manner that alters in an adverse way their behaviour and the behaviours of those they live amongst. Statistics that relate to the prevalence of ME/CFS will not reflect this hidden morbidity, which may end up in other diagnostic categories and to be lost there once labels are given that have a tendency to permanently stick.

    ReplyDelete
  10. (Permission to re-post)

    My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned
    30. I still have ME.

    ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease.

    My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now - it's like that every single day. After all these years I still struggle to understand how it's possible to feel so ill so relentlessly.

    My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor's visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I'll go mad with the suffering. Of course it can also be as bad as this for no particular reason - and often is. 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. ME has made my body an agonising prison.

    My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I'm on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable - this despite pain levels so high that I hallucinate.

    I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration.

    Many days I feel utter despair.

    But, unlike some sufferers, over the long years in which I've had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going.

    My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me - severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for - but I don't. 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. This is something that must change.

    And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:

    Please put an end to the abandonment of people with severe ME and give us all real reason to hope."

    By Emily Collingridge 2010-2011

    ReplyDelete
  11. Hi John, indeed the mild end can be decidedly severe by any normal person's standard.

    "There is no doubt in my mind that many cases of ME/CFS never make it into any diagnostic category initially, but may do so over the passage of time." -- a critical point. Orders of magnitude more funding needs to go into biomarkers.

    Can we also educate physicians to detect the disease at the mild end? How difficult is that? Jamie says she can pick out the disease, but I don't know how severe you have to be before it can be done. Can you teach this skill?

    ReplyDelete
  12. Hi Kassy, I think you nailed it. We have a different set of constraints from HIV/AIDS. We gots de Internet, but we absolutely need to meet with members of Congress, protest on the streets, etc. As for "sicker longer than you", yes, that can be divisive too.

    How do we reach unaware mild sufferers most effectively?

    ReplyDelete
  13. Peter, indeed we need to communicate much more what severe sufferers experience and what the disease looks like at the mild end when those sufferers went on to become severe. It needs to be accurate and not shy.

    "Some vocal severe sufferers doubt that the mild sufferers have the same disease" -- yes, I think that has led to many people who do have the same disease being driven from the movement. IMO we need to welcome them.

    The reverse is also true. I was driven from the movement because I was too sick for the definitions. They did not resemble my presentation.

    Suppose majority slow progression were the case. Suppose we had the identical disease with the identical number of people progressing quickly, but nobody in addition progressing slowly. The logical question is, Why would subtracting the slow progressers make it any more urgent to take the fast progressers seriously? The inverse question also applies.

    Perhaps this was your Will Rogers point: the fast progressers are every bit as urgent and important after you add slow progressers. The fast progressers do not disappear or reduce in number just because you add slow progressers.

    Many people are mild for a long time -- lulling them into complacency -- and then progress fast and then it is too late. Many get worse 5% per year and don't notice how serious it is until it is too late.

    We have to be accurate at all times. IMO mild sufferers should be told about things that might make them worse, just as healthy people all over the world were told about safe sex in the 1980s.

    If we don't know enough about those things then we need to find them out. The incessant push against doing research is killing people.

    The lack of epidemiology argues for more epidemiology, not less.

    A similar statistical effect I've been concerned about and might post at some point is Simpson's paradox. "Subset" (with or without the scare quotes) and sister-disease shenanigans and oversights can yield misleading results even with good cohorts. Dunno if it's been a problem in practice or not, but it is worth looking for those who can pore over the research.

    ===

    Hi Jack, yes, biomarkers are critical and ICC needs to be validated from all angles. And yes, a lot of sufferers have an MS-like disease, others lupus-like, etc.

    ReplyDelete
  14. How do we reach unaware milder sufferers?

    Probably the same ways any issue reaches any unaware population: many ways. We could certainly employ scare tactics, use humor or whimsy, or attract with beauty -- there are so many creative people among us, if only we had the energy to create.

    But we do, all the time, create with every scrap of energy we have and wave the results at the world begging, "Look! See?"

    Too many quiet voices that need to be raised together and amplified. We are Whos and we need Horton.

    ReplyDelete


  15. In our experience not only do the mildly affected, if they have been diagnosed correctly, not want to know, they actively marginalise us, ironically they claim to represent the Severely Affected.


    Is this why so many seem so eager to embrace Fukuda - and the CFS label ? I wonder how many of those currently diagnosed as having ME, would fit the ICC Criteria ?

    Unfortunately people may feel severely affected, but it does not mean they have Severe ME.

    The issue anyway is not to do with the mildly affected, it's the clinicans who are selling us all down the river, by refusing to use the right name, Myalgic Encephalomyelitis, by using ambiguous, vague criteria, by tending to focus upon their pet theory of fatigue ..

    There is still no holistic approach, no consensus regarding a treatment pathway, and far many riding the Fukuda gravy train.

    How many clinicans are speaking out ?

    How many of them know, I mean really know, I mean how many have actually entered into the hell that is Severe/Very Severe ME , even for one moment - or hand on heart can say they know how to help ?


    You have Severe ME, you are on your own, in our experience, and never more so than within the ME patient and clinical community.

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  16. Hi Greg,

    Yes, very true.

    Almost all doctors, including top specialists, almost never see any severe and very severe sufferers.

    That goes for the few scientists studying the disease also.

    ReplyDelete
  17. Hi Greg,

    I believe that there are many mild sufferers, and supporters who do not have the disease, who want to know.

    I believe that we need to warmly welcome those who profoundly know in their bones that we are talking about a radically multisystem severe disease in which many people have progressed from mild to severe and died.

    You might like Politics and rage.

    ReplyDelete

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