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ME/CFS Science @mecfsscience.org · 23/04/2026

7) One entry stated: "He was in his early 40s and had lost his job, wife, and family due to his illness” Others mention the sigma caused by ME/CFS: “The guilt, shame, and suggestion of others that there was nothing wrong were destroying me more than the illness."

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ME/CFS Science @mecfsscience.org · 23/04/2026

8 ) Loss of independence is another theme: some patients could no longer care for themselves. They had to move in with their parents or consider moving to a nursing home.

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ME/CFS Science @mecfsscience.org · 23/04/2026

9) The entries also illustrate the context by which patients died by suicide, often noting hopelessness (life is going on without them), extreme pain, social isolation, loss of independence, and dismissal by doctors. Some felt that ME/CFS had already taken their lives.

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