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A MyEpilepsyTeam Member asked a question 💭
Newcastle upon Tyne, UK

Hi, this forum is very important and helpful for those suffering and needing advice. Recently I have noticed people abusing the forum and treating it as a dating site - giving out private email addresses and phone numbers to those that are vulnerable. Please don't abuse the site in this way (I'm not mentioning names but you know who you are).Thank you.

August 27, 2019 (edited)
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Answer Summary

Members debated appropriate boundaries after concerns arose about people treating the forum as a dating site, with most agreeing the platform... Read more

Members debated appropriate boundaries after concerns arose about people treating the forum as a dating site, with most agreeing the platform should remain focused on epilepsy support while acknowledging the value of genuine friendships formed through shared experiences. Several members shared that exchanging contact information can be helpful for deeper conversations or local support, but emphasized the importance of protecting vulnerable members and maintaining the site's primary purpose as a place to discuss seizures, medications, and coping strategies. A recurring theme was gratitude for the community's existence and a collective desire to preserve it as a safe space where people with epilepsy can connect without fear of being taken advantage of or having their support network compromised.

A MyEpilepsyTeam Member

Even though this is called a social network, I consider it more of a support group for people with epilepsy. You do meet a lot of great people here, whom you consider friends. You really get to know your teammates well, and you do get a sense of who's more vulnerable, and those that come across as being more assertive.
I know that, in the past, one or more people have brought up the question of dating other teammates. The idea behind this, is that you'd be dating someone who understands your condition, and is, more understanding and accepting of it. I'm not opposed to dating on this website, as long as it's not taking advantage o those, who can't fend for themselves.
Another problem I've seen here, when I first joined, people that joined and added others, for personal gain or egotistic purposes. Two of my teammates were very present and posting almost on a daily basis, for about 3 months or so. I haven't seen a post from these two ladies in about a year.

August 28, 2019
A MyEpilepsyTeam Member

I know everyone wants to help each other and talking on this forum. If further help is needed a medical professional should be consulted. I don't wish to offend anyone I have spoken to on this forum only help from my own experience. I have seen postings on this site where a person could be at risk. For that person's safety I have reported it to admin. I, like the rest of us only want to help. So please don't take offence. I could be damned if I do and damned if I don't!

August 27, 2019
A MyEpilepsyTeam Member

I doubt that it would be shut down. The person using it for dating only would be cut off myepilepsyteam....

August 27, 2019
A MyEpilepsyTeam Member

I quite agree. Although I know that there will always be someone worse than I am, I have had epilepsy for 34 years now and it has never been under control. This site is for things to do with epilepsy only. If you’re looking for a partner either join a dating site or get in touch with whoever it is via messenger.

August 27, 2019
A MyEpilepsyTeam Member

this is a save place to give and receive advice (mostly on meds/vitamins/diets)... not a dating thing. that is what we are here for.

August 27, 2019

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