Extremely Severe ME/CFS-A Personal Account. Dafoe, W, 2021

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Extremely Severe ME/CFS-A Personal Account
Whitney Dafoe 1
DOI: 10.3390/healthcare9050504

Abstract

A personal account from an Extremely Severe Bedridden ME/CFS patient about the experience of living with extremely severe ME/CFS. Illness progression, medical history, description of various aspects of extremely severe ME/CFS and various essays on specific experiences are included.




Full text at the link: https://www.mdpi.com/2227-9032/9/5/504/htm

Severe ME/CFS List in Brief—Summarizing My Quality of Life

  • I haven’t left my room for 7 years, except when I have to go to the hospital to change my J-tube feeding tube out of medical necessity. I am only able to do this without dying by being sedated with Ativan the entire time, as well as Fentanyl and Versed during the procedure;
  • I haven’t been touched by another human being without it hurting me in 7 years;
  • I haven’t been able to speak for 7 years. I haven’t had a conversation with another human being in 8 years;
  • I haven’t eaten a crumb of food or felt a drop of water in my mouth in 6 years. I’m alive because of nutrients being pumped into my body with machines and tubes;
  • I haven’t taken a shower in 7 years. I clean the most necessary parts of myself with baby wipes every day and it absolutely exhausts me. I can’t handle having someone else clean me;
  • I haven’t cut my own toenails in 7 years;
  • I haven’t been able to hold or even touch my camera in 7 years (photography is my passion and my life);
  • I haven’t peed standing up in 9 years. I haven’t walked to the bathroom to pee in 7 years. I pee in a urinal in bed;
  • I haven’t made love to a woman in 9 years. I haven’t been sexual in any way in 5 years;
  • I haven’t brushed my teeth in 6 years. It hurts my stomach, making it worse and putting my ability to tolerate the feeding tube at risk, which puts my life at risk;
  • I haven’t seen a dentist in 9 years;
  • I haven’t been able to tolerate the sound of another person’s voice without being sedated in 7 years. I wear heavy-duty earmuffs whenever my caregivers are in my room for the bare minimum of time. They can’t talk and have to be as quiet and gentle as possible;
  • I haven’t felt like a human being in 7 years. All humanity has been taken from me by ME/CFS. I live only to continue living. There is no love, joy, passion or creation, only endless, numbered days; (See Appendix A.1)
  • I fight to survive for all those living and dying in silence and darkness (see Appendix A.3).

https://www.mdpi.com/2227-9032/9/5/504/htm
 

LINE

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I am truly sorry you have had to endure this.

If I may ask, any tests for parasites which would include protozoa, cestodes and nematodes? I host a forum for protozoa parasites and know the difficulty of getting a positive diagnosis, especially when the parasites are not the popular ones found in most testing labs. I know some top level parasitologists, let me know if you need contact info.
 

Judee

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Apols, mods, please merge.
Actually I think Whitney is worth multiple threads. We need to keep remembering what he's going through and keep him, Dr Ron and Janet, and this disease in lots of prayer.

Edit: Oops...and people like Dr Phair who are working so tirelessly on this disease as well.
 
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perrier

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"ME/CFS is not generally defined by inability, but by consequences." wrote Whitney Dafoe. And that really in a nutshell describes a good deal. This is a brilliant piece that Whitney wrote.