Does anyone also use the American site "patients like me" ?

[retiredpharm]

I was contacted right out of the blue, on the phone from America and was asked to join and also asked to give a phone interveiw with a group of patients. Where they got my name I don't know.

The site, patients like me, is too complicated and asks question expecting a black or white answer when there isn't one.

I think that this site is brill by comparison

[Cazie50]

I did a while ago, but it all got a bit complex with too many questions.

[Rach1977]

Never heard of it, but lovely compliment for the site ...... very wierd how they got your details!!!x

[Hidden]

It certainly makes you wonder how they got your info and exactly who else can access it too. The internet on the one hand is wonderful for information, friendships and support, but clearly security is still a concern. It's great you like this forum and its wealth of info, support etc.

[retiredpharm]

Thanks for your interest. I don't think the people who run the Patients Like Me site have heard of fibro fog or they wouldn't have such a complicated system. I love this site . I feel easily able to join in and add useful and understanding comments

I think my details may have been obtained from a firm I bought a book on Fibro mailorder some 10years ago

[bheywood]

Hi retiredpharm,

I'm Ben - one of the founders of PatientsLikeMe. We just saw this thread in Google Alerts and read that you received an unwanted phone call - we're sorry to hear that! We would like to find out who is making those calls because our organization doesn't do that kind of solicitation. While we do share health data with partners (like universities, pharmaceuticals or medical device companies), we don't share account information (like name or email) that members have provided.

If you have any other details to share about the call, we'd love to hear it so we try and get to the bottom of this.

Best,

Ben

[retiredpharm]

Hi Ben, I don't know how I came to have a phone call and be involved with a phone discussion but the lady I spoke to asked me to join Patients Like ME.

I have tried te site but did not find it totally straight foward and easy to use although I have been using computers for probably 20yrs.

I also found on the site that a lot of the questions about the way fibro affects me personally difficult to answer in the format of the site - too many questions without a "black or white " answer

[bheywood]

retiredpharm,

Thank you for the feedback about the site. We'll continue to investigate who is making those phone calls under our company name (please let us know if you ever get contacted again).

All my best - Ben