Could you please explain why you closed down a thread because one or two people found it ‘distressing’ (despite others finding it useful) when others are consistently allowed to post wrong and misleading information with potentially disastrous results for anyone believing and following that information. Thank you.
Because, despite the good information, it was ill-tempered and slighlty bullying. The thread ran and ran, offered some useful opinions on either side but started to attract complaints on-line and off-line.
We asked a couple of the people involved to tone it down. They didn’t. The complaints kept coming so we reluctantly decided to close the thread because our top priority is ensuring the foums are a safe, welcoming and supportive space for everyone regardless of their opinions.
Greg [admin]
‘The New Media Team’
Very good question Tonto.
Answers on a postcard please.
I think a lot of the ‘robust discussion’ on here is encouraged by the web teams reluctance to stop people posting incorrect information.
There are a lot of unsung heroes on here (Geoff and Karen to name but two) who take the time and trouble to put the record straight.
I have always thought that this forum was a relatively safe and sensible place for people affected by MS to exchange information, thanks to the ‘policing’ that takes place. I would like to see a more proactive approach from the web team when it comes to some of the more bizarre claims that are made on here, to protect users. There are plenty of unregulated sites out there where people can indulge their more colourful theories.
If someone can come up with a definitive list of what’s ‘correct’ we’ll look into it.
Greg [admin]
I think it would be fair to say that definitive statements like “MS drugs do not work for anyone” and “LDN stops all relapses and disease progress(ion)” are clearly incorrect. Whether everyone reading these boards knows that, without someone pointing it out to them and offering counter evidence, is a debatable point perhaps?
It is pretty clear that making complaints could be used as a tactic to stop threads for no good reason other than someone doesn’t like to hear evidence against their own beliefs or simply wants to be vindictive. For example, I could easily start complaining that the very mention of X makes me terribly upset and then enrol some buddies to say the same and kick up a fuss. Would the thread about X be stopped? And what if, flush with success, I did it again for something else (maybe with the same buddies, maybe with a slightly different set)? Would those threads be stopped too?
How can the webteam ensure that complaints are genuine? How can the webteam ensure that, if it’s the same people who are complaining all the time, they aren’t simply manipulating the boards?
Does that cover the old forum as well?
Was that question entirely innocent?
There’s a lot of rubbish out there - from crystals and magnets to homeopathic cheetah blood and there’s no way to prove them wrong.
This is what makes the discussions so robust. But as an example, how about ‘LDN is more effective than Avonex’. Or ‘LDN tends to stop relapses 100%’
Then you’d have to ask if that’s comparing LDN and Avonex in PPMS (yes) and/or SPMS (possibly, depending on if the SPMS has relapses or not) or RRMS (no) and ask for statistics and academic studies to back it up (none). That’s when we go around in a circle and come back to Rizzo and Dr Geoff as the qualified academics with MS. (apologies to other academics that I’ve forgotten mention, as I know ‘neuronerd’ is one as well).
Personally, I have a lot of emotional baggage surrounding a certain poster’s attitude and claims. I can’t get past the fact that he winds up people with MS, who are badly affected by stress and that he has at times enjoyed it - oh and he doesn’t get affected by stress as he doesn’t have MS.
There have been various posts by this individual who have caused such distress that I’ve spent sleepless hours formulating replies and typing them with shaking fingers as I’ve been made so angry by them. I saw sense and realised that my health was more important than scoring points against someone who will never see sense.
The discussions were passionate. Yes. Nasty. No, but that’s just my opinion.
I know that would be easy for someone who is new to this site to wonder what on earth is going on, but if they aren’t involved, then why complain?
As I am sure you are aware Greg, the MS Society does have a stance on for example LDN (http://www.mssociety.org.uk/ms-news-and-research/ms-research/new-and-potential-treatments/other-avenues-research/ldn), It would seem to me that when some of the more bizarre claims are made for these treatments then it would be helpful if someone from the MS Society were to draw readers attention to the Society position. I’m suggesting someone from The Society because it will give a clear message of what The Society’s stance is. Their present silence could infer that they do not disagree with some of these more extreme claims.
Judicious early intervention by the media team would help to avoid some of the acrimony on the boards.
I am glad that your ’ top priority is ensuring the forums are a safe, welcoming and supportive space for everyone’ nobody would disagree with that but I feel the current tolerance of some of the more extreme views does not make the boards a safe place.
Misinformation & espousing downright quackery are very dangerous in my opinion. I would have thought that the MSS had a duty to clamp down on it in this forum?
It’s a tricky one. As some might have noticed, I stay well out of the more controversial posts on here. A few years ago I got involved in these discussions and found them stressful and upsetting. But I’m very pleased that there are some knowledgable and qualified people (some mentioned above) to dispute the ridiculous claims that a few people make.
I think the media team are in a difficult position and could easily be accused of censuring free discussion, so I agree with them that when a thread has run and run and has become increasingly hostile it should be stopped. They have allowed people to have their say but the time comes when ‘enough is enough’.
It is worrying that new MSers could either be ‘put off’ using the forum or be talked into spending their life-savings on treatments that are unproven and possibly dangerous, but we do have lots of ‘light relief’ posts and some excellent advice, and I hope they strike the balance.
I think on the whole this is a fantastic, supportive community and I for one would feel lost without it. In a room full of people I wouldn’t expect to get on with everyone I spoke too and would positively avoid some people at first sight. I would also meet some lovely, interesting people who I would choose to stay in touch with. I do exactly the same on here.
Pat x
But these forums aren’t supposed to be the voice of the Society. They’re the voice of the community which uses it. If people want the Society’s stance on something they can read it on our content pages.
We moderate the forums to police behaviour not ideas. If someone comes on here with a view that doesn’t hold water then the community pretty much always does a really good job of highlighting the flaws in their arguments.
In effect, you all police the ideas on here by presenting your views - calmly and politely.
Greg [admin]
What a very sensible post! Thanks Pat
(I agree, censorship is not the way to go.)
Karen x
Excellent. Thanks for the clarification Greg, which brings it very nicely back to “if you don’t want to see disagreements then stop reading this thread”.
Thanks for clarifying that Greg.
Now we know. Though it appears that you have changed your mind from your earlier comment of
If someone can come up with a definitive list of what’s ‘correct’ we’ll look into it.’
Again, it’s not disagreement that generates complaints - they are inevitable when you get a load of people together on-line. It’s the tone that people used when dealing with each other.