The act of bearing witness
There is one act that almost anyone can do to help those with ME/CFS: bear witness. To read what I have written about the illness as well as the work of others with this severe illness and related ones. Both scientific and experiential accounts.
Bearing witness might not seem like much, but it is important because almost nobody does. There’s such a huge gap in the societal understanding of these illnesses. Most of the people with these illnesses, especially the severe forms, are rendered invisible, spectral.
At this point in time when I am at my lowest, I am asking for help with fundraising, labor, and caregiving. But I am also asking for those who can’t do those things, to simply start bearing witness. To please read, listen to, and watch material from and about those with this terrible disease.
Below are some resources to get started.
Documentaries:
- Unrest – free to watch on youtube here: https://www.youtube.com/watch?v=XOpyLTyVxco
- Voices from the Shadows (UK patients) – free to watch with a promo code on vimeo, instructions here: https://voicesfromtheshadowsfilm.co.uk/
- Part of a documentary about Sofia Webster who did mold avoidance in death valley – “Becoming Incurable”, free to watch on Youtube here: https://www.youtube.com/watch?v=6sLLjljPUBM&ab_channel=docsbyvictoria
- What about ME – https://vimeo.com/ondemand/117259
Books:
- Through the Shadowlands by Julie Rehmeyer
- The Puzzle Solver by Tracie White and Ronald Davis
- Osler’s Web by Hillary Johnson (bias against environmental clues but a good history)
- Back from the Edge by Lisa Petrison
- Erik on Avoidance by Erik Johnson
- Mold Warriors and Surviving Mold by Ritchie Shoemaker
- Bitten by Kris Newby
- The Deep Places by Ross Douthat
Articles/Blogs:
- MEpedia https://me-pedia.org/wiki/Welcome_to_MEpedia
- The Independent: Time for Unrest (about patients in the UK) https://www.independent.co.uk/news/long_reads/why-patients-me-demanding-justice-millions-missing-chronic-fatigue-illness-disease-a8133616.html
- Julie Rehmeyer & David Tuller (uncovering bad science on CFS treatment in the US)
- Paradigm change (on outdoor toxins) https://paradigmchange.me/wp/outdoor-toxins/
- Interview with Erik Johnson on the GeneFOOD podcast: The Locations Effect https://open.spotify.com/episode/6BH9dqEIZc7A6F4tmZLgfm?si=qKAvH-dvSVqIFpAHD2sRWg
- Jen Brea blog (on mold damage & illness onset) https://jenbrea.medium.com/onset-part-ii-mold-damage-9f9b37cf5a80
- Ana Harris blog (on mold avoidance) https://anaharriswrites.com/mold-avoidance/
- Anne Örtegrens Farewell Letter https://www.healthrising.org/blog/2018/01/10/farewelll-last-post-anne-ortegren/
- 2022 study, Leonard Jason revising estimated on me/cfs numbers post covid https://www.tandfonline.com/doi/full/10.1080/21641846.2021.1922140?scroll=top&needAccess=true
From Walker:
- ME Etiology from Walker’s website https://walkerstorz.com/me-cfs-etiology/
- Walkers essays in Todays American Catholic:
- ME/CFS Is A Living Death https://openletteropenmedicinefoundation.com/me-cfs-is-a-living-death/
- Industrial Toxins + Mold = Super Toxins video:https://m.youtube.com/watch?v=26wrEHJYruE
Informational Youtube videos on ME/CFS:
- The Most Underfunded Disease at the NIH youtube video
- Claudia Carrera NIH call youtube video
- ME Action NIH Direct Action
- Severe and Very Severe ME/CFS info video
- The PACE trial summary video on the politics
- TWiV 1029: David Tuller on Long COVID and ME/CFS – hour long podcast