
(from a Twtr thread, here for posterity) note: find a better way to archive all this if possible
One of the most jarring and upsetting things I’ve learned as part of this #longcovid journey is the entire world of post-viral and post-infectious illness. One of these, a neuroimmune condition called myalgic encephalomyelitis (ME), is particularly horrific 1/
— Hannah Davis 🦈🛋 (@ahandvanish) August 13, 2020
Hello Hannah, thank you for this respectful conversation. In 2013, my life changed overnight from ME. I was super active and invincible and it completely wiped me out… Was in bed in a fog for weeks / months then years on end. I do a little bit better now, there’s no cure…
— DaveO, #daveo50 (@uncleweed) August 14, 2020
2/ doctors shuffle you around to specialists, disbelieve you, read outdated research about “graduated exercise therapy”, send you to a psychiatrists and cognitive behavioral therapy classes, &/or just string you out on various prescriptions (ssris, benzoa, opiates), it’s brutal.
— DaveO, #daveo50 (@uncleweed) August 14, 2020
3/ So many people simply “vanish” from life, there’s scant “enthusiasm” from public supoort very little fundraising, nothing but hassle from insurance and government disability programs, Comedians joke about it, friends disappear, loads of “snake oil” and so much disrespect…
— DaveO, #daveo50 (@uncleweed) August 14, 2020
4/ Each night is an awake twisting fog, there’s no refreshing sleep, the first sensations in the “morning” or “oh my Gosh, everything hurts and where am I and what the fck has happened to my life?” and it takes everything you have just to keep clean and fed and pushing on.
— DaveO, #daveo50 (@uncleweed) August 14, 2020
5/ I lost everything – career, confidence, love, enthusiasm, hobbies, friends… Somehow some people stuck around and I took myself to a far away place to an Ayurvedic clinic to sort of “reset” myself. Then, build a new life within these new boundaries.
— DaveO, #daveo50 (@uncleweed) August 14, 2020
6/ With the current pandemic, there’s a lot more awareness suddenly springing up and I very much hope that with all of the researchers and super computers paying attention to these weird cracks in physiology, something emerges. So many lives simply become invisible from this.
— DaveO, #daveo50 (@uncleweed) August 14, 2020
7/ Many deplete any savings chasing down cures at “famous” institutes and hospitals, try every sort of supplement, IV, natural and otherwise, various therapies – anything which might give a glint of hope, then again “crash“ and fall down into sadness. Ends so badly for many.
— DaveO, #daveo50 (@uncleweed) August 14, 2020
8/ There’s an organization called “open medicine foundation” doing wonderful work and coalescing top researchers around the world and advocating for patients. From my view, more has been done in the last 2 years than the *previous however many* / A fine organization to support.
— DaveO, #daveo50 (@uncleweed) August 14, 2020
9/ There is a documentary film by @jenbrea called Unrest which raised a lot of awareness / it’s super hard (for me anyway) to watch as well, I see myself and ummm, it’s really hard. Dreams broken and infinite lost potential. The stories are important, real people, real sadness.
— DaveO, #daveo50 (@uncleweed) August 14, 2020
10/ I don’t know wish this absurd illness (alternatively called something which minimizes it and another name which is almost impossible to say!) on anyone. Sending these note out into the world in hopes of fostering understanding and please please please a cure. #Fondly
— DaveO, #daveo50 (@uncleweed) August 14, 2020