Just a reminder of our important rules

Just a reminder to all members that we need to respect some common rules of “decency” when we post or make a comment on other members’ posts.  I have recently received a number of complaints about some of the comments that are being made.  I have to say that Tracey and I are doing our best to keep this site safe and clean, but it can be an uphill struggle sometimes, at least for me, to know how best to proceed.  

As you will read under Club, Terms of Use, we do have some rules which members have to accept when they join the Pacemaker Club. Under “Your Conduct” we explicitly agree in using this website or any service provided, that we shall not:

“provide any content or perform any conduct that may be unlawful, illegal, threatening, harmful, abusive, harassing, stalking, tortious, defamatory, libelous, vulgar, obscene, offensive, objectionable, pornographic, designed to or does interfere or interrupt this website or any service provided, infected with a virus or other destructive or deleterious programming routine . . .”

While the majority of Pacemaker Club members are caring and considerate, a small minority clearly are not.   Despite our Terms of Use, our rules are being broken time and time again.  I will not hesitate to take action against any member found to be breaking these rules, so that the majority of peace loving members can feel safe using this site.  

If any member wishes to respond to this message with any suggestions how we can all get along better, feel free to leave “respectful” comments.  I should be grateful if you could kindly refrain from naming and shaming any member in particular.   Thank you


17 Comments

Keep doing an excellent job

by atiras - 2023-09-05 07:49:02

You and Tracey do an excellent job, especially when compared to some of the other corners of the Internet (that I try not to frequent). As the moderator for a number of forums, FaceBook groups, mailing groups and other places, I know how hard it can be.

Wherever I post, I try to be cognisant that 'tone' is very hard to convey in words and also that my experiences are exactly and only that: MY experiences.  I may make light of my own journey through the arrythmia/pacemaker/heart failure/transplant maze, but others find their journey frightening and/or suffer unpleasant symptoms that I have been spared. They come here for support; if I can't offer that support (through lack of relevant experience or knowledge), I don't respond. I wish that a minority of others would consider whether their responses are supportive and refrain if they might be seen as dismissive or insulting. It's not necessary to display your knowledge or 'win the argument' unless it actually helps the OP.

Edited to add a practical suggestion: Perhaps the forum 'rules' could be amended to explicitly state the kind of conduct we expect, not only the kind of content that's forbidden. One of the forums I moderate has:

"To preserve an environment that encourages civil, fruitful and on-topic dialogue, <this forum> reserves the right to suspend or terminate membership in this community for anyone who violates these rules and/or to remove, edit, move or close any topic at any time should we see fit.

COMMUNITY RULES AND ETIQUETTE GUIDELINES

The Rules

These rules apply whether you're asking a question or generously sharing what you know.

Be nice. Focus on the content of posts and not on the people making them. Please extend the benefit of the doubt to newer members.

Respect the purpose of the community. Use the community to share successes, challenges, constructive feedback, questions, and goals for <forum subject matter>."

well said, Gemita

by Tracey_E - 2023-09-05 09:11:10

Thanks to Gemita for manning the ship by herself while I was away. 

If a post does not clearly break the terms of service, we do not delete. That leaves a lot of gray area and is a slippery slope. While we keep an eye on things, we can't and won't be micromanaging every post. That is as unwelcoming as unkind posts. Please play nice. If someone is not playing nice, do not engage. 

If you have an issue feel free to message either of us, but please keep in mind that we are volunteers, and that if a post doesn't violate the terms of service, most likely the best we can do is message the offending poster. 

Terms of Service

by atiras - 2023-09-05 09:46:53

"If a post does not clearly break the terms of service, we do not delete. That leaves a lot of gray area and is a slippery slope. "

What's stopping you changing the Terms of Service to make explicit what has been implicit until now?  Most users would not (I hope) object to 'some common rules of decency' because they already follow them. Anyone who does object is asking for permission to be e.g. unkind!

You don't have to come down heavy on every 'offence' -- a warning is often sufficient to people who lapse (not everyone is used to considering the impact of their unfiltered thoughts on other people, and there can be 'cultural' differences in play as well) -- but it does give you the framework to delete the relevant posts and enforce the wanted behaviour if necessary.

atiras

by Tracey_E - 2023-09-05 10:10:47

Gemita and I are moderaters only, we don't have authority to make changes to the rules. I've discussed this with the owner in the past. We go through phases like this occasionally, but most of the time the site runs smoothly without the need to be more heavy handed.

Tracey_E

by atiras - 2023-09-05 10:51:15

That's a shame. There are other ways of doing it (e.g. something on the home page, a 'read before posting' reminder) depending on what is available for you customise, but they aren't as effective.  And of course, if the owner objects to changing the rules, they probably wouldn't like the other options either. Which pretty well leaves you and Gemita in the lurch -- enforcing unwritten rules is a thankless position.

not in the lurch

by Tracey_E - 2023-09-05 15:16:52

It's pretty simple actually. Someone nudges a line, we message them. Someone crosses, we delete. Stomp all over the line, find your account deleted. The rest of the time we let adults be adults and trust that good manners will prevail. The offenders are always the first to think any new rules apply to someone else anyway. 

Tracey_e

by atiras - 2023-09-05 17:00:54

As long as it works for you both, and you dont get accused of picking on somebody or making up rules as you go along.

offensive comments will always be removed

by Gemita - 2023-09-05 18:30:17

Atiras, if I see offensive comments anywhere on this site that could cause distress and upset to a vulnerable member, I will remove these immediately, have no doubt about that.  I always keep a record of what I delete and will always advise the poster immediately of the action I have taken, either publicly or privately.  There is no way I would leave vulgar, offensive comments in a post, in comments/threads, in a member’s Bio or Profile for vulnerable members to see.  I wouldn’t be able to tolerate such vulgarity myself in any event.

As a matter of fact I check all new members' Profiles/Bio’s to look for any signs of spamming, advertising and the like.  I also check for authenticity of their accounts. I am confident between the two of us we are managing well to keep this site clean and safe with the time resources we have available.

Atiras

by Gemita - 2023-09-06 06:08:49

Atiras, your comments have been immensely helpful.  As you say, “Tone” is very hard to convey in words and I think this is an area some of us could work on when responding to posts.  Tone can make all the difference to the original poster, making them feel welcome and “supported”.  The wrong tone can cause more harm sometimes than what is actually said.

I am not sure that your statement “if I can't offer support because of lack of relevant experience or knowledge, I don't respond” would work for me, since many posters will have their own unique condition and what are the chances of one of us having the exact same condition/experience?  I would rather respond, if only to welcome the member and to hope that someone will pick up on their post, rather than to leave the newcomer with “0” comments.  That doesn’t look too caring either and will probably push the newcomer towards other sites.

I agree though, I wish that a minority of members would consider whether their responses are really supportive and refrain commenting if they might be seen as dismissive or insulting. As you say, it is not necessary to display our knowledge or 'win the argument' unless it actually helps the original poster.

You have made some important points Atiras, so thank you

Rules

by Aberdeen - 2023-09-06 07:55:36

All I can say is-Thank you both for your hard work.You are doing an excellent job and Pacemaker Club is very helpful !

Expert Opinion vs Peer Opinion

by Penguin - 2023-09-06 08:36:05

A moderator with a medical / pacing background would be helpful if you want to reduce peer based opinions, however well intentioned they are.  

None of us know as much as we would like and are always learning.  Sometimes we get it wrong and it's good to get picked up on that IMO, because we learn from it.  Moderation in that respect or a timely post from someone who knows better, is welcome. 

Sometimes it's good to take some time out and reflect too.  Tone is important. 

I do agree about posts which go off topic. I've been guilty of that one and although the subject matter may be related it is not necessarily useful to the OP and this thread has served as a timely reminder of that. 

Thank you very much for this hard work behind the scenes

by quikjraw - 2023-09-06 09:13:26

Thank you both for continuing to make this site a welcoming place especially for people early in their journey.

Not only for the behind the scenes work you do (which i did not realise!) but also the comments you both put on here to cut through the nonsense and ultimately make people more positive about their siutation.

Penguin, John and Valerie

by Gemita - 2023-09-06 11:21:45

Penguin, well both Tracey and I most definitely have a pacing background, so I think we qualify there.   A medical background?  Would certainly be helpful but not essential since this is fundamentally a support group and our main purpose is to help implantable device recipients meet and share information.  However I am pleased to know that we do have medically qualified members who are always on hand to give valuable advice, so what more could we ask for? 

John and Valerie, please pop in more often.  It is good to hear from you both again and to have your support.

medical advice

by Tracey_E - 2023-09-06 18:44:31

Even if coming from a medical professional, if that person isn't your doctor who has seen you and knows your history, don't take it as medical advice. Assume all advice here is peer support and opinion. 

 

Just a reminder and medical advice

by Malya - 2023-09-08 16:56:35

Dear all,

I'm so grateful for this website. I keep reading it and sometimes check in like now. I'm also so grateful for the feedback and support from the questions I've asked so far.
Every time I read any post I learn a little bit. Sometimes I feel very confused because this isn't my area of expertise. But, I know I should, and must learn about the chunk of metal inside me and how it affects the heart whether resting, exercising or any other activity.

The bottom line for me is that we all have a pacemaker and that sharing our experiences will enable a way mostly forward and mostly a better understanding.

Malya xxx

Forum rules

by skigrl3 - 2023-09-09 19:36:35

Thank you to the admins for all you do. This is an amazing forum and I feel lucky to have found it. 

Thanks Gemita!

by Lavender - 2023-09-15 15:20:21

You do an amazing job! This forum is a one of a kind place of acceptance support and compassion. It's stayed this way because of our moderators. It's a complex job. Like any family, there will be squabbles. Difference in personalities and attitudes makes the world go round. 
 

We are here not so much to seek medical advice but for support from peers. We do have some incredibly knowledgeable people including medical professionals. Anyone knows we are not here to give medical advice. We steer someone to that if it's indicated. 
 

There is no way a medical professional would ethically give advice online to strangers they've never met or examined. They do give general advice and helpful links, impart medical knowledge. 
 

There is no place in a support forum for insults or angry tirades. Even the best of us lose it at times. So what do we do? Remembering that each person is valued and their input is important, we forgive and move on. If you're the one who publicly lost it, say so and move on. Or, lick your wounds a while and take a lesson in toning it down. Keep giving us your insight. Keep helping. We need everyone. 

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I wouldn't be alive if it wasn't for pacemakers. I've had mine for 35+ years. I was fainting all of the time and had flat-lined also. I feel very blessed to live in this time of technology.