This account has mostly been earning by curation which s fine. I'd like to be more active here, but I find myself simply not having the energy or ability to keep up. I have been sending donations since this account has been created, though less frequently. These donations go to non profits mostly Open Medicine Foundation but also the UC Berkeley to help fund Dr. David Tuller's work debunking ME/CFS myths and junk science, and by god is there so much to work with.
I also am in contact with patients people with chronic illnesses mostly abandoned by society and their families (abuse is rampant against disabled people). Many people with "invisible" ( though these conditions are in fact quite visible if doctors would bother to look) chronic illnesses do not even get disability benefits. less that 4 000 people with ME/CFS on the US get SSDI (according to govt stats) yet millions of people suffer -latest CDC estimate is 1.3% of the population but that is just those with a diagnosis. Unfortunately so many go undiagnosed when their doctors psychologize the illness (psych illnesses are valid but it is dangerous to dx anxiety to someone with POTS for example)
Contrary to what people seem to believe it is actually very very hard to get on disability in the US .Especially as a woman because most doctors male and female, do not believe us even with positive test results. Ask any woman with a chronic "invisible" illness, she has many stories of medical gaslighting likely spanning decades. Medical gaslighting kills thousands of women every year in the US alone. it has almost killed me more times than I can count. you need to pay for all medical testing yourself in the US which can run $10-$20k and the default is to reject applications. Tens of thousands die every year waiting. Many are too sick to apply and go to the necessary medical appointments. Many others simply cant afford to get the testing. For patients with PEM/PENE the process can permanently disable folks further.
So I am wondering if this account may better serve, well spoonies and their supporters, caregivers, family, friends., etc.
Maybe I should focus on the donations going directly to the people who need it most?
I would need a volunteer or two. I could pay a few HSBI to someone to curate posts, and help me co ordinate giveaways.
I am thinking a package/prize which includes HSBI, maybe HP delegation, and other things to help spoonies and allies thrive on Hive.
Thoughts?
In case you are wondering is medical misogyny is still so rampant please look it up yourself.I mean it literally kills directly and indirectly as does medical racism and other forms of discrimination. Hysteria is still being diagnosed, they just keep changing the name. Ironically some men are diagnosed with it too -mostly men with female dominant conditions. I talk to a lot of men who are shocked once they start being treated this way, it's like culture shock.Suddenly these men are not believed by their doctors(with no cause to doubt except they have a female dominant illness/symptoms so they must be "crazy"). For women this is the default treatment more times than not.
