Outbreaks of fully-preventable diseases are increasing
As reported on Thursday, April 11th in the UK paper The Independent, “Swansea measles outbreak: Confirmed cases rise to nearly 700″, which is worse than than last year’s outbreak in Merseyside, England.
Over 2,600 MMR vaccines were given last week, but are still insufficient to counteract the number of unvaccinated people, or those who lack the full number of necessary dosages. Public health officials explained that the outbreak will continue to grow. (This is what is meant by “herd immunity”: there needs to be a sufficient percentage of people who are immune to prevent the spread of infection.)
And as the article reminds us,
Before the introduction of the MMR jab in 1988, about half a million children caught measles each year in the UK. Approximately 100 of those died.
But for reasons I don’t understand, Andrew Wakefield (who apparently suffers from ‘Center of Attention Deficit Disorder’*), was not just mentioned as a historical reference, due to being a pivotal figure in the paranoia that led to the drastic drop in immunisations. The front page of The Independent’s online edition for Saturday, 13 April 2013, has in its top, featured article a large photograph of him, “Struck off MMR scare doctor: Welsh measles outbreak proves I was right“. What in the world for?!
Why the concern over Wakefield’s opinions being published, with a newspaper’s front-page lead?
Andrew Wakefield should not be a featured person of interest for opinions. He is no longer a licensed doctor in either the UK or the US. In 2011, Medscape designated him “Worst Physician of the Year” and in 2012, Time listed him in, “Great Science Frauds”. There is also a good editorial in the same edition of The Independent, “Andrew Wakefield’s baleful legacy”.
Wakefield’s unprofessional behavior as a researcher and false assertions that MMR vaccines can lead to autism (in a 1998 article in The Lancet, later withdrawn by the journal) are a bunch of frass (insect dung). Plus, his ongoing media attention and involvement with what initially were fringe groups, inflated such ‘antivax’ sentiments to mainstream popularity.
Vaccination rates dropped drastically, from 92% to as low as 50% in some areas. Measles outbreaks began occurring across Britain, and in 2006 for the first time in 14 years, someone died of this preventable disease.
(Similar outbreaks happened in the US as well, including mumps. In 2006 got an MMR vaccine then because I had never had mumps, nor been vaccinated for it. Even if I had, the old killed-virus mumps vaccine used when I was a child was found to be ineffective.)
Included in The Independent’s series of articles is the useful, “Timeline: How the MMR scare story spread” by Jeremy Laurance.
The feature article: the good, the bad, and the problematic
The front-page feature by Jeremy Laurance is titled, “Struck off MMR scare doctor: Welsh measles outbreak proves I was right”. Which of course, is not true; Wakefield is just bloviating again**. As the front-page subhead reads, “Experts condemn discredited doctor’s outburst pinning the blame for the outbreak of measles in Wales on the Government as cases in the Swansea area rises”.
The linked article posted in the Health News section has a different title, “MMR scare doctor Andrew Wakefield breaks his silence: Measles outbreak in Wales proves I was right” (subhead: “As measles cases rise, experts condemn Wakefield’s outburst”), which begins with with six paragraphs of current events, then describes Wakefield’s assertions in the next eight paragraphs.
BUT, the factual counterpoints to the nonsense, clearly stated by, Adam Finn, paediatrics professor at University of Bristol, and childhood vaccines expert, are not given until afterwords, in the next nine paragraphs of the article.
Unfortunately, not everyone is going to read that far, nor stop to digest the complete refutation of all the idiocy that Wakefield said.
I think Finn’s factual material would have been more useful if presented earlier, such as a point-by-point dismissal of nonsense, e.g. ‘Wakefield claims … but Professor Flinn refutes …’
Alas, perhaps due to following the common news formula of, So-where’s-he-working-now, included this last paragraph, which unfortunately lends him what some might perceive as professional credibility:
“Dr Wakefield moved to Texas, US, in 2001 where he is director of Medical Interventions for Autism and in January was promoting a reality TV series on autism.”
Remember, Andrew Wakefield uses the title “Doctor” because he earned a degree in medicine; he is not licensed to practice medicine in either the UK or the US.
As I said, Wakefield should remain a historical warning, rather than a featured person of interest for opinions. Adding on the reasons why his comments are harmful nonsense at the end of an article are not enough to detract from the fact that all this frass is featured for free!
* I didn’t make up the (fictional) COADD — ‘Center of Attention Deficit Disorder’, but I sure see a lot of it in our problem students (as opposed to the students with problems, who generally want to avoid being in class).
** Bloviating: a lesser-known, but useful addition to one’s vocabulary: to speak boastingly, pompously, aimlessly; as the OED says, “talk at length, especially in an inflated or empty way”
Had a migraine this morning
Cancelled on my shrink.
Need to clean and organise
But I can’t even think.
Moved bedrooms three days ago
O where is my daily pill box?
Boxes and piles everywhere
O where are my clean socks?
I need to go out and garden
Weeds have eaten the side yard.
I need to finish planting
Heat’n’humidity too damn hard.
I need more hours at my job
Stocking groceries at the store;
717 pounds of charcoal
Added bruises to the score.
Need to hammer and hang things
But grandchildren are asleep.
Need to paint and put away stuff
Always more work and I just keep–
Charging for hardware I gotta buy
Like a frequent flier down at Lowe’s.
Wish everything was at the Restore*
Spending too much goodness knows.
Had a migraine this morning
Cancelled on my shrink.
Need to clean and organise
But I can’t even think.
Moved bedrooms three days ago
O where is my daily pill box?
Boxes and piles everywhere
O where are my clean socks?
* Restores are where Habitat for Humanity sells new/gently used building materials; they are a great way to reduce-reuse-recycle and save lots of money on building supplies! The hitch of course is that the items vary daily at stores.
Wait a minute, this is a migraine diary; useful and important, but not such a “dear” topic.
Today I had another migraine. The symptoms included:
As mentioned, I’m putting together a diary of migraine details for an upcoming appointment with a specialist. The other week I had one so bad that my son had to take me to my GP for a Toradol injection, to be taken with a fresh dose of Imitrex — “fresh” in both meanings, because earlier I had taken my last and slightly-expired pill. I’d planned on asking the pharmacist to order a refill, but of course, had been unable to go into work at the grocery! (The irony.)
“Have you made an appointment with a neurologist?” asked my doc.
“Headache speshlist; don’ remember whom.” I held my wallet in front of my nose and squinched one eye open a millimeter to pull out the correct business card.
“Oh good, that’s just the person I wanted you to see. Takes forever to get an appointment, though.”
“In April,” I mumbled.
“Yeup; takes forever. Okay, I’ll have the nurse come in with the injection, and I’m writing you a ‘script for some more Imitrex.”
When I do get to see this new specialist, I want to be armed with a good data set so we can maximise the efficacy of our first appointment. But to do that, I had to figure out what kinds of data would be needed. This in turn meant researching the various types of headaches, migraines, and symptoms. I got to learn lots of great new words!
If the headache is bilateral (both sides of the head), then it’s a regular tension-type headache. I’ve had some intractable ones that linger for a couple-three days, despite various medications.
Unilateral headaches (just one side of the head) are the migraine sort.
There are the icepick migraines that feel like someone just stabbed you in the head. Although intense, they are mercifully brief — just a minute, though there can be several repeats throughout the day.
Migraines can be temporally divided into three stages: the prodrome or early-warning symptoms, the migraine itself, and the postdromal after-effects. If I wake up with a migraine, then I don’t have the benefit of prodromal symptoms to alert me to take some medication and stave off the worst effects. However, one of the benefits to keeping data sheets is the ability to suss out what sorts of symptoms are prodromal, so I can have better self-awareness.
A persistent tension headache can turn into a migraine (ugh). Eating much wheat also seems to be a trigger for me; a small cooky isn’t bad, but a couple slices of pizza will do me in later (not to mention digestive hoo-hahs as the gluten works through my kishkas). Barometric pressure drops — especially those that bounce back up from a swiftly-passing storm — are notorious for making my ears and head hurt.
The cognitive and mood factors can be less obviously related to migraine prodrome: brain fog, depressive state, insomnia, or light sensitivity. You might think these would be pretty obvious, but the problem with chronic pain (from hypermobility+osteoarthritis+TMJ, especially combined with 11-13 hour work days) is that one gets into those viscous circles of pain-sleep problems-depressive states. Throw in everyday hyperacussis and UV-sensitivity, and sometimes it’s hard to sort out what is which. “Ain’t we got fun.”
Once I started researching various migraine symptoms, I had a much better means of both identifying and describing the various symptoms I experience.
One thing that quickly became apparent was that like snowflakes, no two migraines were precisely the same. This is interesting from an objective point of view, but it also means that I have to spend a bit of effort to verbally identify the symptoms I experience during each migraine, and then shortly thereafter note them. Although a cognitive task that I cannot always perform throughout the entirety of the experience, it does afford me the opportunity to detach part of my consciousness to that objective state, which gives me one step of remove from the intensity of the experience. (My research background is useful in so many ways.)
An Aura can include visual disturbances such as:
Scintillating scotoma the classic flickering/shimmering/sparkling arc, zig-zag or castle crenelation effect;
Drifting phosphenes phosphenes are “stars” you see if you stand up too quickly or sneeze; phosphenes can also refer to the geometric patterns that happen when you press on your closed eyes;
Diplopia just the fancy word for double vision;
Oscillopsia when objects appear to oscillate, vibrate or bounce;
Photophobia “the light, augh! too bright!”
Allodynia pain from nothing in particular, or something that wouldn’t normally cause pain, “augh the sheet’s touching my arm!”;
Osmophobia “the smells, augh! too overpowering!”
Olfactory hallucinations smelling things that aren’t really there;
Phonophobia when even the clattering of dust particles falling is too loud;
Hyperacussis I startle overmuch at sudden or sharp noises — well, even more so than usual;
Auditory hallucinations hearing things that aren’t there, nor are related to my tinnitus;
Synæsthesia Feeling sounds, and other odd cross-sensory effects;
Paresthesias tingling or numb feeling like “pins and needles”, or like someone is yanking on my kneecaps or tendons;
Vertigo, nausea, vomiting, chills or clamminess;
Ataxia a “lack of order” or bad muscle coordination;
Disarthria / aphasia disarthria is trouble speaking clearly, and aphasia is problems with speaking and understanding, or making sense of reading things.
Once all that is over, there is the postdrome, or “migraine hangover”. I’ve no idea how one compares to a drinking hangover — I’ve never drunk that much! But it is something like having the flu: weakness, generalized muscle aches, laterality confusion (right v left), fine-motor difficulties, exhaustion, lack of appetite, intense thirst, intermittent strabismus (wandering eye), temporary dyslexia / reading comprehension, auditory processing lags, concentration problems, or once in a while, feeling energetic — “wow, I’m no longer in pain!”
Then of course, the was the issue of creating a useful data sheet, one that was both complete and easily used — and this is where my dual backgrounds in behavioral research and typography+layout blend well.
As with any sort of biological data, it is important to note the frequency, intensity and duration. In addition to those classic factors, there are also the sorts of factors that one more often considers in ecology: the type, season (if any – only a data set of more than a year can determine that), and the extent, in this case, the extent of the disability that results from migraines.
I’m sorted the pain and disablement into three levels:
1 annoying pain, workable
2 moderate pain, reduced work
3 severe pain, incapacitating.
With the diary, I can then sort out the frequency, intensity and duration of the issues. So far I’m relizing that it’s much more of a problem than I had realized. It’s not so much that one gets used to pain, but that one gets used to being in pain, to headaches as a way of life.
Damn, but April’s a long ways off.
( A follow-up on my shaky employment status, as described in a previous post, The Catch.)
So now I’ve twice seen the ENT (Ear, Nose & Throat doc, not tree-folk), to figure out if the vertigo, worsening tinnitus and hearing difficulties are related to Ménière’s, or “just” migraines. At those visits I also spent time in the audiologist’s booth: “Huh? Sorry, I can’t see what you’re saying.” “Oh,” he replied jovially, “this isn’t a vision test, it’s a hearing test.” Ha, ha. Very funny.
(Have I mentioned that lately one of the cable channels is messed up, and maddenly, we’ve not had any closed-captions on episodes of CSI ? Listening to TV is hard enough with fussy babies who want bouncing, much less auditory processing glitches and tinnitus.)
And then something wonderful happened:
The day after my first ENT visit, it occurred to me that it might be useful to ge an official letter from the doc to give to my various bosses. So I called in my request to the office nurse and picked it up from the receptionist and passed out copies to my supervisors and those got fowarded to Human Resources people and —
I was saved by bureaucracy.
(I mean hey, it’s gotta happen sometime, right?)
Because apparently being treated for Ménière’s disease (note the careful legal waffling on diagnostics) falls under the umbrella of an American labor law known as the The Family and Medical Leave Act of 1993 (FMLA). Basically, taking care of sick family members, birth, adoption, or one’s own illness (covered by the Act) is protected so the worker can get unpaid sick leave without worrying about job security.
I cannot be dunned for absences related to bouts of vertigo.
My principal was of course very polite and helpful in the process of explanating this unexpected coverage. I was asked about accommodations that might be helpful. Alas, none of the things suggested by the Job Accommodation Network are applicable to my job (but that’s a great site if you need ideas for accommodations for most any sort of affliction or difference).
However, I was giving some 60 days of sick leave for absences related to — and only to — Ménière’s. Despite my initial relief, my job status still feels as wobbly as my gait some days. Stay tuned for further developments.
“This one is my ‘Insurance Job’.”
She is one of my coworkers, this on job #3. Yes, I have three jobs, one almost full time, one seasonal evenings & weekends, and the other seasonal and weekends. Hence the general lack of regular bloggery due to 10- and 12-hour work days, 6-7 days per week. I am one of the many over-worked and underemployed, or perhaps that’s underpaid, but certainly unable to make a living from one job, in any regards. I can’t really complain all that much, given how many people lack sufficient, if any, employment at all, and how many other people are in the same overworked shoes.
That was the first time I’d heard the pair of words as a specific phrase, but I knew what she meant instantly.
For those of us with multiple jobs, we have a specific job that we must at all costs keep, for it provides us with the terribly necessary medical insurance. Without such we could not afford to see our doctors for even mundane issues, nor afford many medications, nor, [insert your favorite misfortune-averting phrase] be able to pay for emergency or hospital care.
Without medical insurance (and horribly, sometiems even with medical insurance!) anyone in the US is a mere emergency-room visit away from bankruptcy.
I would love to write a long post citing all sorts of statistics about the numbers of uninsured, under-insured, the perils of trying to go without and self-medicating or second-guessing, and all sorts of issues.
But I can’t. I got about four hours of sleep last night. (I’ve not slept well because I’m out of analgesics; I’ve not been able to get to the pharmacy when they’re open because I’ve been AT WORK and AT OTHER WORK, and it’s not like I can just send a family member down to pick up a bottle of tablets, because even with insurance my assorted monthly meds cost $90 and that’s not pocket-change.) Then I taught classes for some 6 hours, and then cashiered for 4 hours, and oy my feet hurt. But I gotta get to sleep, because tomorrow morning is my only free time this week before I go to work again at noon.
But hey, even though I’m overworked, I have an “Insurance Job”. Thank goodness.
This morning I’m again in pain and rather stiff. I know that many of you have rather specialised knowledge, and would appreciate your thoughts on getting diagnostics.
I have a number of conditions, both common and uncommon, including Raynaud’s, migraines, cough-variant asthma, tinnitus & hyperacussis and Auditory Processing Disorder, motor tics, and assorted neurological glitches including prosopagnosia (face-blindness) and ADHD. Getting these things diagnosed over the past decade has been wonderfully helpful for those that can be medicated, figuring out how to make accommodations for those that can’t, and being able to prove to others that I have documented reasons for difficulties, and that I’m not being lazy or stupid.
However, the crux of this post is that I also have Continue reading Requesting your thoughts, please
For the first time in months and months — far longer than it should have been, but there we are with the insane busyness of life — a friend and I got together at her house for dinner.
“You look like you’re finally relaxing,” she said after I’d been there a little while, and we decided to not wait in conversational limbo for the third person (who never did show). “You were so stiff when you came in,” and she made reference by some expression (that now escapes memory) of how I was indicating being relaxed by behaving more normally.
Not “normally” in the er, Normal (neurotypical) sense, but me-normal, where I felt comfortable enough to sit and rock slightly, to not worry about making eye contact, to get a bit flappy at funny events or when agitated, to shed the pent-up motor tics. To just be me. To “let my hair down” and to set aside unnecessarily restrictive social norms. To eat my chicken and rice with a fork, and the still-crisp cooked green beans neatly with my fingers (as one does with fries or asparagus), because her table was Nicely Set for our aesthetic enjoyment and yet we weren’t standing on formality.
We talked about typical stuff, like the foibles of spouses, the concerns for college-age kids, the drudgery of eternal home repairs, the quirks of cats, of temperamental computers and the thrills of new mobile phones, of career changes, and the vicissitudes of economic times.
We also talked about atypical stuff, like the difficulties of college education and employment when dealing with various educational/neurological disabilities, of managing arthritis pain and joint issues, of the wonders of TMJ bite blocks, of dealing with the profound cluelessness of the general public for the extreme pain of migraines and how hospital Emergency (A&E) is a horrid place to physically be when in the throes of gut-wrenching-head-splitting pain and the snarkiness of some medics therein.
Crip chicks like we don’t diss on our disabilities, we diss from our disabilities. It’s not poor-pitiful-me whining but the healthy pitch-a-bitch whining from someone who understands, even when our respective glitches are not all issues shared in common.
I need more social life, but there’s so much of ordinary socialising that I find enervating.
I’m not antisocial; the interest in socialising is not a binary form, where one either does it or doesn’t do it. But over the years I have learned what I actually enjoy (as opposed to what one is “supposed to” enjoy). My intro/extroversion levels vary wildly because some kinds of social interaction are nothing but draining, while others leave me (if not physically) at least spiritually recharged.
I’m not fond of socialising by large quantities of people all chattering with each other in the same room, where the conversations get all blenderized from my Auditory Processing Disorder, to where I end up trying to tease apart sequential fragments of half a dozen unrelated conversations, fruitlessly trying to follow just one voice or two, and reasoning out from fractured context what some of the mis-heard words could possibly be.
I’m not fond of socialising where the content gets watered down to less-consequential subjects of chit-chat, by dint of less privacy and some unwritten code of how long one is “supposed” to entertain time with another guest before moving on, and by the other unwritten rules of conversational quid pro quo, where my monologuing to fully deliver a story complete with back-explanations and thesis statements delivered at the end is discouraged in favor of witty repartee.
I like the time to mutually share and analyse our respective news, and the real, content-laden answers to our mutual questions of, “How are you?” The real “How are you?” question, not the fluff of “How-are-you?” or “How-was-your-day?” that is the social minefield trying to distinguish between polite interested query of acquaintances and polite disinterested query of associates (that latter social coin that is all form and no content), or the mental quagmire of trying to answer “How-was-your-day?” when the question is so vague and our answers are so experientially linear and tangential instead of whatever the hell others were expecting.
I was comfortable — we both were comfortable — because together we had created a social environment that enabled our mutual comfort. It was an agreement that had been developed by long familiarity and by various conscious decisions over decades, to create a friendship that fulfilled our individual needs over the culturally-proscribed forms. True friendship enables positive interactions, and supports needs and affirms and enriches our lives.
Here’s a toast to real friendships!
In the field of medicine, there’s a saying that, “If you hear hoofbeats, think horses, not zebras.” This means that although medical students will learn of a great many odd diseases, some of them are quite exotic (“zebras”), but that most patients’ complaints will resolve to common causes (“horses”).
Which of course does not mean that one won’t encounter “zebras”. Once a very great while there will be someone with the rare genetic disorder or unusual psychological glitch. Mayhap even someone with several rare genetic disorders and unusual psychological glitches! This insect profile post is dedicated to all you readers out there who are “zebras”. (Wave to the crowd folks; let them know that “rare” is not synonymous with “you’ll never meet them”.)
Like medical zebras, Zebra Swallowtails (Papilionidae: Eurytides marcellus) are rare amongst butterflies. They are not endangered, but unlike Monarchs, Cabbage Whites or Painted Ladies, you don’t see these zebras very often. This is a big butterfly, about 6-9 cm (2.5-3.5″) wide. They live in the eastern half of North America, and can be found wafting around the borders between fields and woods or streams. The reason such a large and striking butterfly lives in such obscurity is not for limitations in ecotone; it will live most anywhere but montane and alpine zones. It’s not even limited by breeding season; there are two broods in northern populations, and four broods in southern.
Rather, they are rare because the larvae are monophagous (a fancy word for “only eats one kind of thing” — a parent might lament, “My child is seemingly monophagous upon Goldfish crackers”). Well, plenty of catepillars out there are picky. But Zebra Swallowtail ‘pillars will only eat the leaves of pawpaw trees (Asimina triloba) and other species of the genus. Unlike the ubiquitous callery flowering pear trees or purple barberry shrubs, homeowners and parks managers do not go around planting pawpaws. Unacommodated by the lack of host plants, the butterflies spend their lives beyond the outskirts of the developed world. Only butterfly enthusiasts and rare fruit fanciers who go around planting pawpaws Just Because, or residents of diversified country wilds will have much hope of seeing zebras.
It’s not that medical or butterfly zebras don’t exist, but that you have to know where to find them. You also have to be willing to support their particular needs to have the opportunity to get to know them. But either one of those conditions requires understanding that zebras even exist. Yes, you might even (gasp!) have one in Your Back Yard! It’s true. And now that you have a better search image, I guarantee that you will be much more likely to meet them.
I am in the waiting place. Again. Still. It’s annoying.
I can be patient; I’ve spent hours waiting and watching for things to happen when doing outdoor photography, waiting for the sun to be covered by a cloud so the light is not so contrasty, waiting for the eternal wind to not blow so hard, waiting for an insect to alight somewhere, waiting for it to quit raining, et cetera.
But at the core, I like to operate and make my decisions based upon facts. A lack of (what feels like) sufficient or useful data leads me to milling around, stuck until I can figure out where or how to get the information I need. I also like to know what I’m going to be doing, so I can be prepared and plan around the other things in my life. One of the ways that I reduce stresses in my life is by limiting these free-floating anxieties.
Merely being in the limbo of putting things on hold because I’m stuck waiting is annoying, but I’m an adult. I can deal with feeling like I’m stuck on a dreary flight circling over O’Hare airport, waiting for a runway to free up. There’s no point in having a hissy fit because that won’t change anything. So why am I grousing? Continue reading Circling Over O'Hare