seen from China
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seen from Malaysia
seen from United States
seen from Australia
seen from United States
seen from Iraq
seen from Malaysia
seen from United States
seen from Malaysia
seen from India
seen from Germany
seen from United States
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seen from Hong Kong SAR China
Osler’s Web is an extraordinarily long and detailed history of the emergence of chronic fatigue syndrome in the U.S. between 1984 and 1994. I’ve met a lot of people w/ me/cfs who’ve wanted to read it but didn’t have the time/energy/spoons for a 700 page book, so I went ahead and wrote a summary of it. It’s 46 pages long, which I wouldn’t call short, but it’s a bit more accessible than the original I hope.
Link to Google Doc
when my illness is in the driver’s seat...
what if we reconsider the ubiquitous narrative that doctors become doctors primarily out of a desire to help other people
Risk Assessment: Should You Go to the Doctor?
Add one point for each statement that applies to you.
You are a woman.
You are not white.
You are transgender, intersex, or gender-nonconforming.
You are queer.
You are under the age of 25.
You are over the age of 60.
You are overweight (whatever that means today).
You have one or more psychiatric conditions.
You have one or more physical disabilities.
You have one or more chronic health conditions.
You have a neurological difference or disability that affects communication (i.e. autism).
You have more than one of the above (7-11).
Your appearance is in any way disheveled or “unprofessional.”
Your appearance is too professional.
You are visibly distressed about your symptoms.
You are not visibly distressed about your symptoms.
You do not speak English.
English is not your first language, or you speak English with an accent.
You are on Medicaid.
You are uninsured.
You are poor or working class.
You are addicted to drugs or have a history of drug use.
This is not your first time this year seeking medical attention for this issue.
This is more than your fifth time this year seeking medical attention for this issue.
You have lost count of how many times you have sought medical attention for this issue.
It will be a challenge to condense your medical history and current symptoms into a narrative can fit within a standard-length clinical visit.
It will be a such a challenge that you will probably leave some things out.
It will be such a challenge that you plan to skip it entirely focus only on your most immediately concerning symptom(s).
0 points: Low risk. Positive outcome not guaranteed, but you probably won’t be accused of malingering or 5150’d.
1 - 5 points: Some risk. Be prepared to be asked if you are “stressed.” If you aren’t already on anti-depressants or anxiolytic medication, you may be offered some.
6 - 10 points: Moderate risk. Your concerns may be blamed on your existing medical conditions, disabilities, body size, or lifestyle. Be prepared to be interrupted.
11 - 20 points: Elevated risk. You may be accused of exaggerating, doctor shopping, or drug seeking. Alternatively, you may be treated like an idiot. Speak carefully: appear informed, but not better informed than the clinician. Appear respectable and put-together, but not so much so that they doubt that you’re really in pain.
20+ points: High risk. Prepare yourself to be treated like a criminal or dismissed wholesale. Consider taking notes. Consider recording the appointment, if you’re in a single-party consent state. Walk a razor-thin line between appearing sympathetic and firmly advocating for yourself. Keep your immediate priority in the crosshairs. Don’t let your guard down, but don’t get hysterical. Lower your expectations. Firm up your resolve. Bring tissues in case you need to cry after (but for the love of god, don’t cry during). Good luck.
half baked dissertation thought of the day: the epistemic challenges posed by complex chronic illnesses are very similar to those posed by climate change. complex chronic illnesses often involve dynamic, interrelating systems (nervous, immune, endocrine) that both traverse the whole body and mediate the body-environment interface. likewise climate change involves dynamic, interrelating global patterns of weather, movement of pollutants, etc. both are so fundamentally multivariable that they're not always compatible w/ study by the much-fetishized randomized controlled trial. this does not mean (as advocates for both have been pointing out repeatedly for decades ad nauseum) that they're somehow fundamentally mysterious or unknowable - but that we have to learn to account for and reason with a much wider range of evidence, *and* that we have to think about intervention in broad, systemic, and processual terms rather than seeking quick techno-fixes to paste over existing systems.
catch me yelling about my research on twitter
Image description: Twitter thread by user @/annikataraa that reads: concerned lately about how much public health research paints everyone who critiques contemporary clinical standards as "illiterate" (via the concept of "health literacy"), such that "literacy" is a measurement of compliance rather than epistemic facility. ngl many chronically ill people are the most "health literate" people i have ever met - they're not deviating from physician recommendations bc they've been duped by misinformation, but bc conventional medicine has so little to offer to them. to wit - people living with chronic illnesses are asking difficult but necessary questions of medicine, and it's not their fault that there are so seldom adequate answers. idk why it is surprising to certain public health researchers that people will try most anything to regain a basic level of functionality. this is NOT a rejection of science, but an earnest and urgent critique of it. & despite scant to nonexistent funding for formal research, ppl living with complex chronic illnesses have figured out a damn lot about the conditions of their own lives, and they deserve to be taken seriously.
Travelling. I feel like a drug rep. SO MANY pills in my bag...
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