Table 1 The forum members with quotes illustrative of each theme

Theme 1: Problems obtaining a diagnosis

FM1, FM2, FM6, FM8, FM12, FM13, FM18, FM19, FM21, FM23, FM26, FM27, FM29, FM30, FM31, FM43, FM50, FM52, FM 59, FM65, FM68

Theme 2: Rationalisation and validation of their experience

FM2, FM6, FM8, FM12, FM19, Fm21, FM24, FM25, FM32, FM38, FM43, FM48, FM50, FM52, FM54, FM56, FM60, FM65, FM68, FM73

Theme 3: Seeking control over their condition

FM2, FM5, FM6, FM8, FM10, FM11, FM12, FM16, FM17, FM19, FM20, FM21, FM22, FM25, FM26, FM30, FM37, FM38, FM42, FM43, FM44, FM45, FM47, FM48, FM50, FM51, FM52, FM53, FM54, FM55, FM61, FM69, FM70

Theme 4: Sharing and seeking advice and guidance

FM2, FM5, FM6, FM8, FM9, FM10, FM11, FM12, FM14, FM16, FM17, FM19, FM20, FM21, FM22, FM23, FM25, FM26, FM27, FM29, FM30, FM34, FM35, FM36, FM37, FM38, FM39, FM41, FM42, FM43, FM44, FM45, FM46, FM47, FM48, FM49, FM50, FM51, FM52, FM53, FM55, FM57, FM58, FM59, FM60, FM61, FM62, FM64, FM67, FM68, FM70, FM71, FM73

Theme 5: Social repercussions

FM1, FM2, FM6, FM11, FM12, FM13, FM17, FM18, FM19, FM20, FM24, FM26, FM30, FM34, FM37, FM41, FM43, FM46, FM50, FM51, FM52, FM58, FM61, FM66, FM67, FM73