Post

1) Trigger warning: suicide This paper analyzed 505 entries on the National CFIDS Foundation memorial list. These were people with ME/CFS who passed away. The messages summarize their life, illness and struggles. The researchers grouped these into several recurring themes.

2) One recurring theme was lack of recognition and respect from health institutions and authorities. Disability agencies come up a lot. For example: “The benefits agency made life hard, and the hurdles of having a disease so misunderstood left her depressed."

3) Dismissal by healthcare providers was another theme, causing some to avoid medical care: “Her experiences with physicians who dismissed her complaints made her avoid them as much as possible and she was taken to a hospital by ambulance only when her pain became unbearable"

4) Patients were told that the illness was all in their head and some doctors were not willing to prescribe the necessary pain medication. Some said that medications or treatment with graded exercise therapy worsened their condition.

6) Many entries also highlighted disbelief towards ME/CFS by social acquaintances. People didn't fully understand the impact of the disease. Sometimes the family was unsupportive and dismissed them as not really being ill.

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."

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.