RLS information

[Artjr102]

Hi, I get a lot of helpful information off this site but my main site for restless leg info is through the Restless leg syndrome foundation. They have website info, blogs and Facebook pages. A lot of people on this site knows more than most doctors because it’s all been trial and error.

[Hidden]

Thanks for sharing this. I can't help responding and apologise for any offense my comments might cause.

I admit that I have no experience of the site you refer to so have no intention if criticising it.

There is an "however" though.

This is a personal thing - it's an American site, nothing actually wrong with that, but my experience of American sites is that there is a tacit assumption that everyone on it is American and the principle drawback, for me, of that is that our health care systems are very different.

Secondly, I am very wary of people claiming that either they themselves or someone else "knows more than a doctor". Especially when that knowledge is derived from trial and error.

Of course, I accept that the sufferer of any condition, such as RLS is an expert on their condition whereas a doctor is not. However doctors have a broader knowledge of medicine and may be aware of say, the interaction of one medication on another, the consequences of things done which an individual thinks is good "because it works".

Furthermore, I have experienced a site where it was claimed one particular member was said to be "better than a doctor" because he had time to research things. this member also had a blog site on which were posted references to journal articles and studies. However, he clearly didn't have the level of education or understanding of a doctor often misquoting, misrepresenting, taking out of context , drawing invalid conclusions and failing to discern the quality of the evidence he put forward apparently to support his personal bias.

What was particularly awful was his apparent complete lack of compassion, sensitivity and appreciation of how his statements might cause distress.

Furthermore, an individuals trial and error, i.e. individual experience is no substitute for scientific evidence drawn from studies with statistically significant conclusions.

I honestly dont know if this is true of the site you refer to. I hope you can appreciate my reservations about it. If you want to encourage people to try it, there's no harm in that. I just think that if they do try it and it's as you present it, then they need to approach it with a good sense of healthy scepticism.

What's good about THIS site is that people are willing to share their experiences and appreciate what others' experiences might be. There is sympathy and support. No one really claims to know more than a doctor or to be the purveyor of universal truths

If the site you refer is like that, great. If you prefer it, it's your choice.

You've put me off it.

[Hidden in reply to Hidden]

The RLS Foundation is a non profit organisation similar to our RLS-UK site . They fund some researches for RLS. They do webinars on RLS, Dr. B has been involved in doing some of those webinars. They are the ones which decided to try to change the name of RLS to WED then changed it back again the RLS. You can find some of there information on RLS on the internet, most of their info you have to be a member to abtain it. They are not my cup of tea, but each to their own.

[Hidden in reply to Hidden]

Thanks Elisse. I'm sure it's OK, I'm not quite clear why someone should post on here that they find another site better!!

[Hidden in reply to Hidden]

Tis a bit strange.