Tweeting my way through Narcolepsy; Social media and chronic illness

No mention of Ben’s Friends. I don’t tweet (never learnt how to) or I would let her know about us

It seems as if she has something against narcolepsy communities. She started off trying to sound sympathetic, but then her real reason for writing the article came out in the end. If she had a brain, she would realize that the purpose of the communities is to bring awareness, give support where it is lacking otherwise, share whatever research someone actually took the time to find because they care enough to do so, and hopefully have someone in the professional medical field chime in and share and/or do something. The aforementioned things mentioned should have been the sole purpose of her article.

I read somewhere, but unfortunately can’t find the link, that doctors monitored some general health forum and concluded that over 90% of information put on the site by patients was accurate. I will keep looking for it as it was very interesting.

Yes, that is interesting. But why wouldn't the information be accurate? Patients are the one's living it and they are only sharing their own personal experiences. There is no reason to lie about their diagnosis and what medications they are taking to the education from their doctor. That is a crazy far fetched notion to even think such a thing. I will love to read that information after you find and post it.

I have a feeling it was in my Saturday newspaper months ago but I will see what I can find. On another site dealing with a rare condition with many different causes so that it responds differently to a plethora of medications from person to person, we do have to watch out for people trying to convince others that such or such a medication is the answer to everyone’s problems whereas it could be positively harmful to many people. But you are right; we are the patients and often in the position of educating the doctors.

Exactly! But if a patient swears that a medication works, I'm pretty sure that any patient listening that are not getting the results from their own medication consults with their doctor before switching meds. It is still up to the doctor to prescribe the meds and hopefully the doctor makes a sound decision.

You have to hope so. I’ve been astonished at how people buy drugs in from abroad on the Internet.

Yes, that is true, but I don't compare them to real patients that genuinely care about their condition and the conditions of others that would take the time to involve themselves in support from a community. They probably just want a quick fix, not support or to be educated.