Extremely Severe ME/CFS - A Personal Account
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- 11 years
- Published
- Apr 2021
Summary
Tube feeding: after roughly a decade of ME/CFS progressing from mild to extremely severe, Whitney Dafoe developed severe gastroparesis and was fed first via a PICC line with IV nutrition, then via a jejunostomy (J-tube) for total enteral nutrition, going six years without eating or drinking by mouth. He had been ill since 2004 and was bedridden for seven years by the time of writing in 2021. The feeding tube sustained his nutrition but did not treat the underlying ME/CFS, which remained extremely severe throughout. Modest gains in his ability to write and communicate came separately from medications (Ativan, then Abilify), not from the tube feeding itself. The account describes tube feeding as an ongoing, indefinite necessity with no discontinuation or resolution reported.
What they credit
Credits Low-dose Abilify / aripiprazole, Tube feeding (NG, NJ, PEG, TPN).
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