Gravity's Rainbow

botany, shoes, books, and justice

April 9, 2018
by sarcozona
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Please visit me at home; everything is too much

The disability associated with severe cases of migraine extends far beyond days spent in bed. Online, people talk about the ways that migraine has rendered them housebound. Driving, for instance, can be difficult; shifting lights trigger migraines and drug side effects cause clumsiness. People with migraine stay home because they fear perfumes or other foreign smells that can make them sick, or because they are simply too tired or hurting to venture outside.

– Joanna Kempner in Not Tonight.

Arriving at work a few weeks ago, I was mildly surprised at how easily the door at the bottom of the stairwell opened, but too absorbed in the book I was listening to to pay it much mind. But I was jolted into full awareness of my surroundings when I couldn’t get the door to my floor open. I took out my headphones and heard a wild whooshing and my heart sank.

One of my most reliable triggers for migraine attacks are rapid changes in barometric pressure. My building’s HVAC was undergoing some unannounced maintenance that day and the work had set up strong pressure gradients throughout the building.

I was optimistic. Maybe I wouldn’t get a migraine – I’d been doing so well lately and how big a pressure difference could the HVAC system realistically cause? Even if I did get a migraine, they often take hours to develop – maybe I’d make it to the meetings I had planned that day anyway.

But 45 minutes later my aura started and I headed home, angry and demoralized.

I often struggle to work 10 hours a week. Getting a migraine on a day that I was well from something I could have avoided is infuriating.

I often work and socialize from home. I simply don’t have the energy to navigate transit and stimulating environments every day. But I also have so much less control over my environment outside of my apartment and that carries very real risk for me.

 

Who needs city housing regulators when AirBnB can use data-driven methods to effectively regulate room-letting, then house-letting, and eventually urban planning generally? Why not let Amazon have its own jurisdiction or charter city, or establish special judicial procedures for Foxconn? Some vanguardists of functional sovereignty believe online rating systems could replace state occupational licensure—so rather than having government boards credential workers, a platform like LinkedIn could collect star ratings on them.

In this and later posts, I want to explain how this shift from territorial to functional sovereignty is creating a new digital political economy.

via From Territorial to Functional Sovereignty: The Case of Amazon « Law and Political Economy

April 2, 2018
by sarcozona
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Boring patients with boring diseases

When focusing on the paper crackling between my chilled skin and the vinyl of the exam bed wasn’t enough to distract from the discomfort of my treatment, I asked my neurologist why there are so few specialists for migraine. I’ve been seeing a specialist in stroke for the last 5 years while I wait for a spot to open up. He told me that migraine is a boring disease to treat. I tried not to move as he started a series of injections in the base of my skull.

Migraine affects more than one billion people. During a migraine attack, people may suffer severe pain, nausea and vomiting, painful sensory sensitivity, perceptual disturbances, profound fatigue, confusion, and other neurological effects. Attacks last many hours or even days. A fraction of patients with migraine develop a chronic form of the disease. Isolated and relatively infrequent attacks become nearly continuous and many symptoms, such as light sensitivity persist between attacks. The World Health Organization classes severe chronic migraine with its most severe disabilities, on par in its effect on quality of life, productivity, and financial security to quadriplegia, terminal stage cancer, and severe depression. Including less severe variants of the disease, it causes more total years lost to disability than all other neurological disorders combined.

Migraine has a whole host of neurological symptoms and causes noticeable neuroanatomical changes and brain lesions, but the genes associated with migraine largely act in the cardiovascular and gastrointestinal system. Reconciling the neurological symptoms and changes with genetic findings is a fascinating puzzle that could illuminate complex connections between bodily systems and lead to treatments for many disparate diseases.

And with all that, research funding is 10-100x lower than for other diseases with similar individual and population level burdens, treatment options are limited and have considerable tradeoffs, and neurologists find it boring.

March 19, 2018
by sarcozona
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If you need so much help, why aren’t you asking for it?

In 2010, after a great deal of lobbying by an influential group of headache specialists, the National Institutes of Health (NIH) held a workshop on headache research that included a small group of people representing stakeholders in headache medicine: representatives from various NIH institutes, various headache organizations, headache specialists, researchers, and patient advocates. The meeting was much anticipated; the headache research community had long wished that the NIH would devote some attention to its needs, and this was a chance to be heard. But attendees drew a blank when the NIH asked how the headache research community might foster partnerships with patient groups to increase funding, resources, and education. Although a few patient advocates were in attendance, none of them could name a strong patient-driven organization for migraine. According to one source, a frustrated officer from the National Institute of Neurological Disorders and Stroke (NINDS) retorted: if people with migraine disorders have all of these needs, then why aren’t they doing more to advocate for their cause? [emphasis mine]

– Joanna Kempner in Not Tonight.

I could have started a patient organization, but instead I spent two weeks trying to figure out how to pay for the part of my meds my insurance wouldn’t. I could have seen if the AHS had any advocacy positions I could fill in my community, but instead I spent 6 hours getting insurance to cover just one of my prescriptions. I could have talked to my MLA about getting an important treatment for chronic migraine covered under the provincial healthcare program, but I spent the time getting my meds moved around between pharmacies and trying to figure out why my insurance wouldn’t cover them.

I could have organized with my fellow patients to see what we could do to get migraine research properly funded, but I had 1172 days with migraine in 5 years. I could have gone to a headache conference, but was too sick to get on a plane for 4 years.

I tried to educate the people around me about treatment deficits for migraine and got recommendations to exercise and stay hydrated. I spent months getting accommodations for migraine in my workplace and then was told they weren’t relevant when I tried to use them. I might have started organizing for migraine when I was in my 20s, but I had been told so many times that I was weak and lazy and attention-seeking that I would ask myself if I was faking for attention while lying alone on the bathroom floor in the middle of the night. I tried to have a conversation with my neurologist about the lack of headache specialists and he told me migraine patients were boring.

Migraine patients are prevented from advocating for their cause. Like for many people with illnesses, the structure of our work and insurance systems eat up enormous amounts of time and energy that could otherwise be used for healing, community building, organizing, and advocacy. On top of all that, the dismissal and minimization of migraine as a disease in the public at large means that we often don’t feel like we can ask for help, let alone demand support. The general stigma of migraine means that seeking help and support is often cast as weakness, whining, and attention-seeking and advocating for yourself or other patients like you can cause you to receive even less support and help. And the lack of legitimacy migraine has in the medical profession means that it’s hard to get a diagnosis at all, let alone treatment. You’re seen very differently by your community and your doctor if you are organizing a 5K for Cancer versus a 5K for Migraine.

Also it is nonsensical and cruel to run medical research like this – giving money to diseases based on how well-organized and funded and photogenic patients are? That sets your healthcare system up to find and fund expensive treatment for rare diseases instead of reliable, affordable treatments and preventative public health interventions for the most common and disabling illnesses.

Huh