**Errata: at 26:14 my dumb ass said 2,000 as the threshold under which a disease becomes a rare disease.  I swear to God I was just extremely tired and I'm not actually that stupid, the real number is 200,000.  A disease with less than 200,000 sufferers in the United States is considered a rare disease by the NIH. ME/CFS is far over that threshold. I have brain damage**


Another season in hell:

What does it mean to live, beyond survival, what does the flesh want, does biological matter have a telos? In the case that it does, what is the current telos of the damaged flesh, sludgy blood, and inflamed brains of the patients with these illnesses? And is there finally good news on the horizon for people with these illnesses? We delve into that tough question more than ever in this episode, I try to resist taking a blackpill on this issue, Brennan tries to prepare the antidote, and so on. 

Walker and Brennan (death__denial) start with a discussion of suicide as a non-psychiatric phenomenon ("rational" and informed by circumstances of living with a physical illness and the requisite pain and lost life/youth/work ability) rather than mood or any perceived psychiatric disorder which distorts thought.  (study on that from Spanish source:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8227525/)

More than in past episodes we get into some of the novel scientific discoveries in these illnesses, as well as the ecology of the research funding systems.
We discuss the mortality rates of post-infectious chronic diseases like ME/CFS and Long Covid, and the causes for the slightly increased mortality. But more importantly we discuss how mortality is a deceptive measure--especially when taken as a sole measure--for understanding the impact of these chronic illnesses, which cause devastating quality of life decreases. 


In this episode we tie together a lot of loose ends we've brought up earlier--personal experiences with the hellish nature of chronic illness, problems in chronic illness activism, allusions to how the wave of chronic illness in the wake of the pandemic may be the impetus for changes in research funding and scientific discoveries, and finally: whether there really is any hope at all for people with these illnesses (ME/CFS and Long Covid primarily). 


This is a shorter episode but potent, with great editing by Rene Joly, using original music samples made by friends of the podcast as well as from the pop/indie music Canon and my 2nd favorite anime, Yu Yu Hakusho..

All of the episodes in this series have selections and allusions from various philosophers/theorists on pain and death, such as Nietzsche, Woolf, Junger, Mishima, Klossowski etc… and some by anonymous authors and poets, too many to give credit to

Sorry for the wait, and enjoy!

https://www.statnews.com/2022/03/29/nih-long-covid-sluggish-study/
https://www.tandfonline.com/doi/abs/10.1080/21641846.2022.2062169?journalCode=rftg20

Many Seasons in Hell (Part III)

Topics in this series include parenting with chronic illness, assisted suicide and the afterlife, toxic mold avoidance, the demonology of industrial capitalism, the endangered elf population of highland forests in the United States, and reconciling extreme suffering with belief in the divine.

edited by Jesse French




#mecfs #longcovid #toxicmold #moldavoidance #chronicillness

Get Me Away From Here I'm Dying, featuring Jeanette Godby: Part I

Topics in this series include parenting with chronic illness, assisted suicide and the afterlife, toxic mold avoidance, the demonology of industrial capitalism, the endangered elf population of highland forests in the United States, and reconciling extreme suffering with belief in the divine.

edited by Jesse French

#mecfs #longcovid #toxicmold #moldavoidance #chronicillness

Get Me Away From Here I'm Dying, ft. Jeanette Godby: Part II

Bonus material that we were going to use in the podcast: a long essay discussing how environmental toxins lead to environmental health disparities, which are then exacerbated by widespread poverty among millennials and gen z.

Read by friend of the pod @brianenometh, with music from Tim Hecker.

#mecfs #moldavoidance

Bonus material: essay on the generational health/wealth gap

Many Seasons in Hell part V


* War reading with chronic illness
* Nazi defeat at Stalingrad
* Hermann Goring and Elf *****
* Elves, faeries, various depictions
* Matcha
* Religion, spirit/soul, vs the material.  Mind and matter
* Nietsche’s illness, contextualizing his fixation on vitality
* Religions and suffering; Christianity and Buddhism
* Making sense of suffering, or the attempt to
* Assisted suicide and religion
* Buddhism and realms
* Different conceptions of afterlife
* Seeking spiritual guidance


Edited by Rene Joly

Sophia Perennis vs. The Vicious Circle

The final installment of the series "Many Seasons in Hell" with @death_denial

subjects:
-Knowing death, near death experiences
-Possibility of cure, medical progress
-Chronic illness experience across age and class
-“If God is good, all things will be rectified”
-Ways to endure and find strength within yourself 
-EPILOGUE

edited by Rene Joly




#mecfs #longcovid #pasc #mysticism

THE END

In 2018, after 16 years of suffering with the illness ME/CFS, Anne Örtegren died by physician assisted suicide. Anne was a fierce advocate for ME/CFS patients; she wrote for HealthRising.com about her experience with the disease and why the world needs to pay attention and fund research. She explained her choice to end her life in a final post titled "Farewell – A Last Post from Anne Örtegren." 

This bonus material episode is a reading of that letter. You can read along here: http://lobel.nu/anne.html. You can find Anne's other posts here: https://www.healthrising.org/authors/anne-ortegen/.

Please listen and pay heed to Anne's final words, they are important. Here's an excerpt we'd like to highlight:

"It would be easier to handle if there were breaks, breathing spaces. But with severe ME/CFS there is no minute during the day when one is comfortable. My body is a war zone with constant firing attacks. There is no rest, no respite. Every move of every day is a mountain-climb. Every night is a challenge, since there is no easy sleep to rescue me from the torture. I always just have to try to get through the night. And then get through the next day.

It would also be easier if there were distractions. Like many patients with severe ME/CFS I am unable to listen to music, radio, podcasts or audio books, or to watch TV. I can only read for short bouts of time, and use the computer for even shorter moments. I am too ill to manage more than rare visits or phone calls from my family and friends, and sadly unable to live with someone. This solitary confinement aspect of ME/CFS is devastating and it is understandable that ME/CFS has been described as the 'living death disease'...

...If we knew there were relief on the horizon, it would be possible to endure severe ME/CFS and all the additional medical problems, even for a long time, I think. The point is that there has to be a limit, the suffering must not feel endless."

Bonus material: Anne Örtegren's farewell letter

A reading of Virginia Woolf's essay "On Being Ill" by Eva.



#disability #VirginiaWoolf #chronicillness

Art by Remedios Varo.

Bonus Material: On Being Ill by Virginia Woolf

Short episode continuing the origin story. Final part out soon. We discuss the relationship between SARS viruses and ME/CFS and our bleak future.


Hosted by Walker and @newvideosurface, music by @newvideosurface. 

Intro: Wipers - "Youth of America"

Origin Story Pt. 4

A podcast about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), mold avoidance, craniocervical instability, environmental degradation, and the epidemic of chronic illness. 

Origin Story Pt. 4

Headless Youth Podcast

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