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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.