Jul. 13th, 2017

walkitout: (Default)
I've been reading _Is it All In Your Head?_ by Suzanne O'Sullivan, MD. On the whole, it is a very good, very important book. Unfortunately, there are a few things in it that I had a problem with. All of my complaints involve when O'Sullivan steps outside her neurology arena and starts applying what she is talking about in patients she sees in her neurology practice who have symptoms (seizures, paralysis, weakness, loss of feeling, etc.) in her area of expertise which do not behave the way those symptoms should behave when objective tests are applied (EEG, electrical stimulation of nerves, reflex testing, etc.) in areas in which she has no expertise. Especially allergies and food intolerance.

Some people have meat allergy which appears for the first time in adulthood, and which in some people disappears after a few years. The onset of the allergic reaction tends to be quite delayed vs. most food allergies.

https://en.wikipedia.org/wiki/Alpha-gal_allergy

This is a _classic_ instance of "Oh that must be medically unexplained but surely can't be a REAL allergy because real allergies don't behave that way." Adult onset. Delayed. Etc. ON TOP OF THAT, it's a reaction to a _carbohydrate_, and allergies are reactions to proteins. Right. RIGHT?!? (ETA: I am describing a rhetorical position here; it is not mine.)

To be clear, O'Sullivan makes no mention of meat allergy or alpha-gal. (ETA: Technically, it is not hers, either.) I am using it as an example. We got really incontrovertible evidence of the _mechanism_ that alpha-gal delivered via tick bite causes adult meat allergy when scientists wanted to figure out why there was regional variation in negative reactions to cetuximab. (ETA: My position is the science-y one. Science has shown conclusively that at least some adult onset meat allergy which behaves very unlike some allergies is caused by a tick bite.)

O'Sullivan is ALSO very clear that every year, something with no medically known cause is found to have a medical cause. She just figures that it happens so rarely that people are really bending way too far over backward looking for medical causes and not looking for psychological causes and that needs to change. I don't actually disagree with her general thesis.

On page 190, she talks about candida and candidiasis, and that period of time now past when a lot of people thought they had it but actually didn't test positive for it even when medical professionals looked really hard. On the next page, she says:

"In the twenty-first century the exact same symptoms are more likely to be attributed to gluten sensitivity or allergies."

I'm not necessarily going to argue about the basic idea: there is a fraction of the population -- not trivial in size but not by any stretch of the imagination most people -- which will tend to latch on to the latest Oh This Is Causing All Your Problems, adopt an associated set of health prescriptions (usually diet oriented Don't Eat This / Do Eat That) and try to pester everyone they know into doing the same, while claiming that it cured all their ills. I'm not even _opposed_ to the general phenomenon. I figure each one of these things helps some subset find the thing that really was wrong with them, they stick with what worked for them, and the herd moves on to the next thing. My theory is that some day, everyone will have finally found the thing that worked for them and we'll all feel about as well as we can. (Is my progressivism / optimism showing? Oops! I'll try to cover that up again. I know it is unseemly.)

Here is what she says:

"I recently went to a dinner party where every person bar two, at a table of ten, reported that they had an intolerance of or allergy to at least one foodstuff. Most had developed the allergy in middle age, which is not how an allergy typically behaves."

She's a neurologist. How did she become so expert at allergies? Adult onset allergies are not particularly uncommon. Adult discovery of allergies is also not uncommon and sometimes deeply tragic. And every time someone decides to actually do a general population study for food allergy, we learn all kinds of new things, which means the field is by no means all caught up with reality. (See alpha gal above, but did you know that 2-3% of the general population is allergic to shellfish? I didn't. I am, and I didn't know how common it was. Legal Sea Foods has employees who have been quoted in the press saying that every little bit somebody shows up from the Midwest, eats something they've never had before and drops from anaphylaxis at the table and often is never revived. Don't you think this is something that maybe shouldn't fucking be dismissed so readily?)

I live in an area where food allergy is taken very seriously by restaurants, in part because of restauranteurs like Ming Tsai (mmmm Blue Ginger):

https://www.bostonglobe.com/lifestyle/food-dining/2015/09/22/when-food-allergies-dine-out/bflRHxlP0y3Gv4blUw13pO/story.html

I've got food allergies and intolerances (yes, Dear Reader, both the proteins AND the sugars in milk cause me problems -- and not just cow's milk either, alas), some of which were detected in infancy and some of which I learned about the hard way as an adult. My husband has food intolerances. Many of my friends have food allergies and intolerances. The group that the author encountered may well have self-selected -- this was a party, I'm assuming some of these people hang out together on purpose. I know it's much easier to socialize with people who have or know someone who has food issues. Dealing with doctors like that one at T-weekend a while back -- or Dr. O'Sullivan -- is the worst. Here we've finally figured out a way to stay out of the doctor's office, and the doctor is now joining us for dinner and trying to tell us that it's just a phase.

No, dear doctors. No, it's not just a phase. It's not all in our heads. And just because food allergy now doesn't look like we used to understand it before is actually reflective of progressively better understanding of food allergy. Which it would be nice if you put some effort into catching up on.

She also disses IBS as probably psychosomatic; she seems blissfully unaware of FODMAP.

Oh, and as near as I can tell, this book is further evidence that in the UK, when people say "learning disabled", they mean something super-different than people mean in the US.

I have no reason to disregard O'Sullivan's neurology based expertise. I agree with her that there is a population over-using (to their own detriment and our shared expense) the medical system in pursuit of something which would be better found through the mental health professions. We part ways whenever she steps out of her area of expertise, which leads me to suspect she hasn't really understood the mental health side of this problem at all.
walkitout: (Default)
Subtitled True Stories of Imaginary Illness

There's only one person in the book (that I can recall) who was outright faking to collect on a lawsuit. And there are only two people in the book (maybe three) who were engaged in some form of Munchhausen's. So if you are looking for that particular kind of hilarity, this isn't the book for you.

This book is about hypochondriasis (health anxiety, etc.) secondarily, and psychosomatic illness primarily. The doctor is a neurologist and placed a ways up administratively in a UK NHS hospital, if I understood the book correctly. She sees people whose seizures do not respond to anti-epileptic drug treatment. Mostly, she keeps them around on video camera and wired up to an EEG for long enough to get both kinds of measures simultaneously on seizures. Generally speaking, in her experience, the non-responsive kinds of seizures don't show up on EEGs, and she attributes this to psychosomatic processes and refers to a psychiatrist. She has occasional amazing, almost faith healing like success, but generally speaking there's a lot of denial.

Her stories make it clear that persistent, no medically known cause patients often are part of family systems which are not very emotionally supportive (like at all) until someone is ill and then they are a lot more emotionally supportive in fact incredibly emotionally supportive, so, you know, incentives. She is not suggesting this is a conscious process on anyone's part, but then neither is that whole Pavlov dog and bell thing, either.

Woven into her excellent, novelistic like stories of patients (suitably adjusted to preserve anonymity and avoid ethical and legal violations), is a brief history of neurasthenia, hysteria, and a variety of related conceptions of these sorts of problems in the past. Anyone who has made a habit of reading Victorian (written or set during the era) novels has a pretty good sense of what these problems have looked like in the past and will not be surprised to learn that women tend to wind up with these labels more than men, then and now (despite the weird history of the theory of neurasathenia).

I had no idea, until I started talking about this book to friends, that so few people knew about seizures that don't show up on EEGs. My sister -- a nurse -- is certainly aware, and told me of a neurologist -- presumably not the only one -- who refuses to accept new patients who don't already have scans. So I absolutely believe the high rates of yeah, these are not the seizures we are accustomed to. I remember the history of hysterical paralysis (very lightly touched on here, sadly); there are psychosomatic syndromes which go through phases, eras in which some particular thing is a Thing, and then it dies down again. Usually once word gets round that the doctors have a test that is 100% accurate.

Really makes you wonder, doesn't it?

If the goal is to get people out of dangerous over-use of medical testing -- and over use of medical testing is incredibly dangerous. If you live long enough and look hard enough, you WILL find cancer. Period. End. We'll all die with it, if we live long enough, even tho far fewer of us will die of it. And many of those logged as dying of it probably died as a result of treatment, a tragedy that will never be adequately accounted for. (The woman whose psychosomatic illness mirrored her mother's breast cancer and death did not trigger any discussion of the evolution of the treatment of breast cancer, and how so much mortality of breast cancer in certain eras is probably directly attributable to the hazards of the treatment.)

If the goal is to get people out of the habit of dangerous over-use of medical testing and to start addressing some or all of their issues via the mental health professions, she's probably going about it wrong. The preventive health services have, on and off, argued against physicals -- going to the doctor to have a bunch of tests done Just To Check. But physicals are a profound form of propaganda for the medical profession. Come here. We'll check you out. We'll tell you what's good, what needs work, etc. And we'll monitor your progress. If you want people to be using mental health services, if you want to destigmatize, if you want the people who NEED mental health services to realize that and make use of it -- and their friends and family to nag at them to do that, rather than to get more unnecessary medical testing done -- maybe we should have mental health checkups. Why doesn't anyone ever suggest that?

In the mean time, O'Sullivan's book looks perfect for book groups. She's overtly compassionate (I don't completely buy it -- I think she's just cautious and covering for her judginess. Believe me when I say, I know what this looks like. I do actually have _some_ self insight). Her descriptions of people and her interactions with them are wonderful -- novelistic and with a nice amount of foreshadowing built into them, along with a lovely sting of had-I-but-known. Under 300 pages, no index, all medical terms explained in relatively accessible ways. It has won at least one non-fiction prize.

So for all that I wish she could have at least _mentioned_ the evolution occurring in somatoform disorder definition, and experiments with DBT and other borderline personality disorder treatments being used for somatization, and for all that I could have wished she had just left allergies and food intolerances right the fuck out of her disquisition on psychological illness popping up with physical symptoms, for all that she managed to leave everything about every treatment modality in bodywork entirely by the wayside, I still think it would be lovely if lots and lots of middle aged women read this book in book group and then started applying some pressure on people who are getting lots of tests that are not leading anywhere useful to at least try seeing a few therapists.

Because in the end, if whatever is going on with us isn't killing us quickly, we'll probably get better faster if there is someone we can talk to about what is going on, and who will help us problem solve so that we can re-arrange our lives to better support our whole selves.

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