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How patients can organize, how medicine needs to change: a webinar on chronic illness, care and covid

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January 14 at 5:00 pm - 7:00 pm US Pacific Time / 8:00pm to 10:00pm Eastern.


As the numbers of the chronically ill grow rapidly worldwide due to what is being called “long Covid,” there is much to be learned from the experience of those who were grappling with the effects of difficult-to-diagnose, understudied, and invisibilized diseases long before the appearance of the novel coronavirus. What do the experiences of the chronically ill teach us about how to survive – not just physically, but emotionally and socially – in the face of huge knowledge gaps and medical disbelief? How can patients separated by vast distances and often unable to engage in traditional political organizing join together to demand answers and treatment? What do patient voices tell us about how the organization of medicine needs to change in order to better serve the well-being of us all?

To register, please see: https://ucsc.zoom.us/webinar/register/WN_Mx5NkZQfSdGgTkdn2tN5gw


One speaker is Jennifer Brea, from the ME/Chronic Fatigue Syndrome community. She's a co-founder of #MEAction, which seems a very successful patient advocacy group. I wonder if there are any lessons we could learn from them.


I suspect a recording will end up on youtube eventually.

2012 lyrica (only) for 11 days max 225mg/day then tapered off over 5 days
2020 lyrica: max 4mg/day. started tapering after 2 weeks and having worse withdrawal than from 225mg
2012-2020 citalopram, currently steady at 25mg



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