Table 4 Examples of different length threads

1 post (n = 341)

1. “We first heard about edavarone on the news—there was a special about how a couple travelled to Japan and I clearly remember seeing the woman who had ALS talk about how, since getting this treatment, she was able to open a vitamin/medication bottle. It was incredible and we were so excited. This led us to research edavarone and get all the information about the research and the treatment available.” (P54, Caregiver)

2 posts (n = 806)

1. “Hey P4 [PwALS], I saw a shout out for you from ALS Canada on Twitter in recognition of your volunteer service. Well done and thank you from one pALS to another.” (P68, PwALS)

2. “Thanks, P68 [PwALS]!” (P4, PwALS)

3 posts (n = 189)

1. “We did talk about financial support, but there is not a lot of support in that area for us. We have talked to social work about living wills, advance directives, and end of life decisions, but haven't done it yet.” (P9, Caregiver)

2. “Hi P9 [Caregiver], you looked for a lot of information online! Did the information you found answer your questions? What sorts of websites did you prefer to gather information from? Did you talk to anyone on the health care team about how to approach financial support?” (Moderator)

3. “Definitely the ALS Society of [province] and Canada. I sought out support groups on facebook and followed people on instagram. Looked at some medical journals. I have talked about financial support a few times, but apparently we don't qualify for any assistance because I "make too much money." Which is still frustrating.” (P9, Caregiver)

4 + posts (n = 819)

1. “The first [ALS] symptoms I presented was when I was exercising at the gym….Now one year had transpired since the episode in the gym. At no time was ALS mentioned and I certainly was not aware of even what ALS was…The original neurologist then referred me to the [multidisciplinary clinic] for further examination. This was about 16 months from my initial symptoms. It was at this examination that I was told my diagnosis was ALS…What I find disheartening is the length of time from the diagnosis and the fact that no health care professionals during the first year and a half ever once mentioned ALS. I lost this time where I could have been developing an earlier plan to deal with this disgusting disease.” (P73, PwALS)

2. “Hi P73 [PwALS], you certainly experienced a difficult journey to this diagnosis. And, I’m with you, it is an unspeakably terrible disease. Do you wish that a health professional had mentioned the possibility of ALS (or of a serious problem) earlier? Or been more open about what they were looking for during the various tests? Does this experience influence your trust in health professionals or your trust that they will tell you what you need to know?” (Moderator)

3. “When I think back there were opportunities to tell me about a possible ALS diagnosis. Especially from the neurologist I first saw and the neurosurgeon. In retrospect I feel they both suspected ALS. I am the first patient with ALS for my family doctor so I can see why she didn’t go down that road. What she did do was minimize my symptoms. That didn’t impress me. Yes, I wish they were more open about the testing. I even encouraged a dialogue during the nerve testing but there was no mention of possible ALS. And yes, it has negatively influenced my trust in Doctors.” (P68, PwALS)

4. “Thank-you for your very authentic answer. ALS is uncommon and very scary (that's an understatement, I know). Nonetheless, many people want to understand what the doctor is exploring. It sounds like you were really searching for some expert input and communication. How about other people in the group: Do you think that a health professional should let you know if there is a possibility of ALS, or of a serious problem?” (Moderator)

5. "Yes, I think you should be told. You need time to process and prepare.” (P44, PwALS)