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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."

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.

5) Another recurring theme is isolation by the illness. Some were "confined to one room and could not tolerate noise or light." Others saw a breakdown of social relationships such as a divorce, loss of friends, getting fired at work, etc.

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.