Suggestion for S4ME thread of ME testimonies

[Ravn]

If the purpose of the public thread is as a resource for journalists would it be an idea to have several public threads, each on a different, narrow topic - in addition to more free-style members-only content - to make it easier to find relevant content?

Some possible topics: experiences with benefits, home care, doctors, pressure to undertake unsuitable therapies, harm, disbelief by family/friends/employers, etc.

Posts in these themed public threads would broadly follow a template and be relatively brief. They could have an optional link to the members-only posts. And possibly an indication whether they'd be willing to be contacted by journalists (who'd have to become members).

I expect public posts are fair game to be used and quoted by anyone, with or without consent. A lot of media outfits are quoting social media posts all the time, and I'm pretty sure not all of them ask politely for permission first - though they should - if they think they can justify it as in some way 'newsworthy'.

Posts in the members-only section (optional) could either be simply a collection of a member's public posts all in one place, or the member could choose to expand on them or add additional content.

So a member could choose to contribute just a single public post on a particular topic, or several, or supplement this with an extensive members-only post.

One question to address in advance would be how to deal with a concerted 'hostile takeover attempt' by a group of 'recovered' patients joining en masse with the aim of touting their wonderful experience with this or that flavour of woo.

This wouldn't be too much of a problem in normal threads where posts are discussed and any woo is called out as woo. But in the sort of thread proposed here which would consist only of posts by people reporting their experience and no further discussion there could be problems. Or am I being too suspicious?

 

[Trish]

One question to address in advance would be how to deal with a concerted 'hostile takeover attempt' by a group of 'recovered' patients joining en masse with the aim of touting their wonderful experience with this or that flavour of woo.

Very good point, I think. And it wouldn't even need to be a hostile takeover. It could simply be individuals sharing their personal experiences with unresearched treatments which, if not discussed on the same thread, might lead to misconceptions about the relevence of such stories to others. I guess we all have in mind at the moment the latest episode in the Paul Garner story in the BMJ.

 

[Robert 1973]

Has anyone had any more thoughts on this? Has it been discussed by the committee?

Each individual's thread could be linked from a post on a core thread that only includes one much shorter, more standardised, post from each person, and with a link to a separate thread with their expanded version if they want to write one, as has already been suggested here.

Yes, I like this idea. A core, moderate thread with just brief testimonies in a standard format with a word limit, and no replies, with the option to link to a separate thread for each testimony for anyone who wants to write more - along with responses to and discussion of that testimony.

Very good point, I think. And it wouldn't even need to be a hostile takeover. It could simply be individuals sharing their personal experiences with unresearched treatments which, if not discussed on the same thread, might lead to misconceptions about the relevance of such stories to others. I guess we all have in mind at the moment the latest episode in the Paul Garner story in the BMJ.

I've been giving this some thought and I don't think it is an insurmountable problem.

First, I don't think there be many Paul Garner type stories.

Second, the rules for the thread could be clearly spelt out. That could include not promoting any type of treatment based on anecdotal experience. All testimonies could be moderated before they appear, and moderators could reserve to right to edit, delete or attach editorial comments to any posts which they consider to breach rules of the forum or the thread. So, for example, if someone were to write about their experience of getting better after trying LP/GET/CBT, moderators could add a standard editorial note at the top explaining that causation cannot be inferred from anecdotes or because A follows B, that there is no evidence that LP/GET/CBT are effective and good evidence that they are harmful etc.

If we are hoping that the thread might used as a resource for journalists etc. then it might even be quite useful to have to have some of these types of testimonies, with appropriate moderator comments added and discussion in linked thread, as it might help some people to understand more about the issues and counterarguments to common unscientific assertions.

I appreciate that this might take a bit of work for the staff to set up and moderate, and I would understand if nobody feels they have the capacity to take this on at the moment, but I think it could be a really valuable resource.

[edited typos to make more intelligible]

 

[Invisible Woman]

I wonder if another approach might encourage more people to contribute.

- I've had a few battles and it's just been so long - I wouldn't know where ti start or what to include/edit out.

- People might forget bits that might be of interest to others.

- It could be an awful lot to wade through, especially if you're looking for testimony that reinforces a point such as how ME might affect the relationship between friends or spouses, treatment in A&E vs treatment at the GP etc.

How about a subforum.for testimonies? Then a thread for the type of testimony. Some thread might be

- Work for how bosses and colleagues reacted

- Family

- GP

- Benefits

Of course these would still take work & effort in behalf of the moderators to manage them. A format like this would make it easier for an interested party to pick out the information their looking for.