Suggestion for S4ME thread of ME testimonies

R

Robert 1973

Senior Member (Voting Rights)
Reading quotes from ME patients in George Monbiot’s article on ME/CFS and long covid in the Guardian gave me an idea: could S4ME set up a thread for people with ME/CFS (and maybe their friends, family and carers too) to post testimonies of their experiences of living with ME/CFS?

I know that are lots of accounts in different threads on here and elsewhere but I was thinking it might be useful to have one thread with no other chat or responses – just an archive of testimonies of what people have experienced for journalists, researchers, other patients or anyone else to access. If anyone wanted to discuss any of the issues raised in any of the testimonies, they could be set up as different linked threads. Maybe moderators could set it up explaining the rules for the thread at the top and set up a separate thread for responses to testimonies, with an explanation of how to hyperlink to the post people are responding to.

Perhaps someone can think of a better way to do it – or maybe something like this already exists that I’m not aware of – but the idea came to me, so I thought I’d share it to see what anyone else thought.

I know there is a thread for members to introduce themselves but that is a bit different. I’m suggesting a public thread for people to post testimonies about the challenges and hardships they have faced due to ME/CFS for anybody to read.

People could obviously chose the post anonymously or under their real name.

Just an idea. Let me know your thoughts.
 
Given that our stories are ongoing, it occurs to me that this could be done as a public subforum where each thread is one individual's personal public description of their life with ME, with others only allowed to ask questions of clarification, not interpose comparisons with their own experiences. The individual would be then able to add further information to their story as it develops if they want to.

I haven't run this idea past mods or committee, so I'm not saying it will happen, just floating an alternative idea.
 
It would definitely need some guidance to focus the poster and aid them in not straying all over.

I imagine that some stories would get quite long so there would need to be some way of maybe standardising how stories get told? Not to be overly constraining but to help with thinking clearly and maintaining focus on the theme.

To me this would need to be done if one purpose of the thread were to be it's use by journalist's or researchers. Salient information could get lost in a mass of exposition.
 
I think there is a potential problem here - journalists wouldn't just copy patients' stories from a forum. They would want to get in touch with individuals to interview them for the story, get photos etc. That would mean either the stories would need to include contact information, but we don't allow people to give personal contact info on threads, or they would need to join the forum and PM them.

The UK ME Association press section keeps lists of people willing to be contacted and asks on FB for volunteers to be interviewed. We can't provide that kind of service.
 
Ah, you're right, @Trish. Hhhmmm....
We want and need more accurate coverage of ME. Any other ideas?

Apologies: on a bit of a different note, CBC Marketplace aired a Long Covid program last night. I've been meaning to post a link on the Forum. Will hopefully get to this soon. Seems the UK is taking LC much more seriously than Canada, according to this CBC program.
 
DokaGirl said:
Ah, you're right, @Trish. Hhhmmm....
We want and need more accurate coverage of ME. Any other ideas?

Apologies: on a bit of a different note, CBC Marketplace aired a Long Covid program last night. I've been meaning to post a link on the Forum. Will hopefully get to this soon. Seems the UK is taking LC much more seriously than Canada, according to this CBC program.
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The not taking LC seriously isn't good but having the UK as an example may not be what it seems. I guess we'll have to hear from those sent to the serious about LC clinics to find out.

As for journalists using stories I think it would still be useful as a starting point for thinking about any issues raised by the stories as a place to start thinking and investigating. Of course there may well be a downside and not all journalists investigate in good faith without a preconceived agenda. You could get journalists implying something because they read about it somewhere and it may bear little relation to any real experience of anyone.

Maybe having a few volunteers write something (without guidance) that can then be viewed only by staff (when they have time) to see where people are going with the idea might be a first step in evaluating the merit of putting a thread up. Or perhaps some the thoughts as staff read can be brought up for discussion in general here. This is starting to sound like a rather bigger project though. I may be over complicating this.
 
Snowdrop said:
The not taking LC seriously isn't good but having the UK as an example may not be what it seems. I guess we'll have to hear from those sent to the serious about LC clinics to find out.

As for journalists using stories I think it would still be useful as a starting point for thinking about any issues raised by the stories as a place to start thinking and investigating. Of course there may well be a downside and not all journalists investigate in good faith without a preconceived agenda. You could get journalists implying something because they read about it somewhere and it may bear little relation to any real experience of anyone.

Maybe having a few volunteers write something (without guidance) that can then be viewed only by staff (when they have time) to see where people are going with the idea might be a first step in evaluating the merit of putting a thread up. Or perhaps some the thoughts as staff read can be brought up for discussion in general here. This is starting to sound like a rather bigger project though. I may be over complicating this.
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@Snowdrop, I agree, a suspect comparison with the UK. However, Canada only has 6 LC clinics. And, their funding is from research dollars, and not the mainstream health care budget, so these clinics' existence could be fairly tenuous. Not to say the UK ones won't evaporate, or turn into GET/CBT wastelands.
 
Trish said:
That would mean either the stories would need to include contact information, but we don't allow people to give personal contact info on threads, or they would need to join the forum and PM them.
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That doesn't seem an insurmountable problem. I told a journalist that we had a member who might be able to contribute to her story; she didn't have a problem becoming a member and contacting him through the conversation facility.

Snowdrop said:
Maybe having a few volunteers write something (without guidance) that can then be viewed only by staff (when they have time) to see where people are going with the idea might be a first step in evaluating the merit of putting a thread up.
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That could be good. I'm thinking, if we do this, there should be a word limit. I liked the stories of real people's experiences put up on the POTSUK website when I was trying to understand what POTS is actually like. (The stories there are a bit less than 1000 words).

It might be a nice thing to do for ME Awareness week?
 
I've recently written my story but now I've written it I'm a bit unsure what to do with it. I'd really like someone - a journalist perhaps - to make use of it and have sent a copy to the ME Association and my local group. I've been unsure whether or not to post it here because as @Robert 1973 says the 'Introduce yourself' thread doesn't seem to be the right place.

I've included a lot about experiences with doctors particularly in the early years - I was referred to a psychiatrist at one point and comments from doctors in my medical notes which reflect the 'false illness belief' stuff prevalent in 1990's. I've also included my experiences of the benefits system which as George Monbiot's article says can be quite harrowing.


So I think @Robert 1973 suggestion is a really good idea.
 
I'm not an expert on posting documents. Someone more clued up than me will be able to advise how to attach them. @Andy?

Another option is to make yourself a blog, say on wordpress, and start a thread here that links to it and just quotes a bit to give a flavour.

Or you can post as a thread with it broken into several posts if it's very long.
 
Trish said:
I'm not an expert on posting documents. Someone more clued up than me will be able to advise how to attach them. @Andy?
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Most document type can be attached to a post, but if a member does this, only other members can access it. I think the most straight forward solution for this situation would be to copy and paste the text into forum posts, but as you note that then might extend over multiple posts.
 
Trish said:
Given that our stories are ongoing, it occurs to me that this could be done as a public subforum
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Snowdrop said:
It would definitely need some guidance to focus the poster and aid them in not straying all over.
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Would definitely need some thought about how to best to organise it. Would be great if the mods/committee could discuss.

After reading comments above I’m wondering if we could have a sub-forum which has a main thread where people are asked to share their experience within a word limit. I think some sort of suggested format might be a good idea, perhaps with key (optional) info at the start of the post – ie age, sex, location, type of onset, date of onset etc. Each post in the main thread could then link to separate individual thread’s if anyone wants to write more or if people want to ask questions about a post.

That way there would be a main thread that would hopefully be reasonably concise (maybe 500 word limit per testimony?) and easy for people to skim through. And if there were any particular testimonies that pricked people’s interest one could click through to the thread about that person’s testimony to ask questions and discuss any issues raised.

I don’t have any strong views about any of this. Just floating ideas as they come to me but pleased that that the general feeling seems to be that it would be a good idea in principle.

[edited to make sentences make sense]
 
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I agree that a thread with perhaps a short synopsis of people's stories would be a good idea but it can be hard, particularly if you've been ill for a long time, to get much across in a something short so I think there would definitely need to be some opportunity for people to post more if they wanted to somewhere else perhaps linking to in an individual thread.

I originally wrote a couple of sides for my 'Millions Missing' story two years ago but it was hard to get much across in something short and that was almost 1200 words. The much longer version I've just written which tells my story a lot better comes in at 5.230 words.

On PR the 'Introduce Yourself' thread has a short form for people to fill in asking things like gender, location how long ill, severity, so there's a standardized format but also with a box to put more. I looked through the 'Introduce Yourself' thread on S4ME a few days ago and few people have said much about their stories when they introduce themselves which seems a shame so perhaps something similar could be done here?
 
I've often thought that it would be helpful to document the abuse, gaslighting and denigration we've experienced from the medical profession.

Most healthy people can't bring themselves to believe this sort of thing occurs, so a readily available archive with lots of stories would be educational.
 
meg22 said:
In the interests of science I've decided to be a guinea pig and post my story which can be found here:
Members only - Meg22's story | Science for ME (s4me.info)
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Thank you, @meg22. I have read your story and think it's a perfect example of why I prefer the idea of each person having their own thread, on which they tell as much of their story as they want to, works better than having just a single thread for everyone's stories.

It has allowed you to be as expansive as you want to be, and to tell your story in your own way without the constraints of word limits or standardised format. You have done so movingly and eloquently.

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.
 
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