Health 2.0 in The Economist
 

Thought you might enjoy this link (it mentions Brain Talk quite a bit):

http://www.economist.com/displaystor...ory_id=9719054

Best,
John

Very Interesting
 

Thank you for sharing this information. I have PN and have gotten many ideas and helpful suggestions from this group of people. They are the best.

Thanks for posting this!
 

This is helpful to me, as I believe that many patients are left in a lurch by their doctors. I see it every day in my professional life.

I even bring stuff to my own doctor. Who was unaware that certain ACE inhibitors have shown promise in preventing Alzheimer's. (the lipofilic ones that is). Why use Vasotec (which is one that does not) when Lisinopril does? Both work fine for blood pressure.
If a drug salesman does not bring information to a doctor (who has a long busy hectic day), then that information not brought is not given to the patient.
Not everyone can have a research physician, in a teaching hospital.

I attended a long chronic pain conference in the spring, with all the speakers representing a teaching university. The sad truth is that their tertiary clinic does not take all insurances. So many people cannot avail themselves of that help.
If I can post it, here, perhaps people will find those answers, ultimately.

So, WE are NOT alone?
 

See this site for reassurance:
http://www.hbns.org/getDocument.cfm?documentID=1562

What surprises me is that other boards are sooo restrictive...I feel I have freedom and some privacy here...that stats aren't being 'gathered' to be used willy-nilly out of context...I appreciate that I can 'cite sites' and express concerns freely. Have these things addressed and just get on with dealing with my own issues and also help others.

That, You, Doc John and the others in the support community are sensitve to my and others' concerns and deal with them in a way that exceeds common-sense and sensitivities...always amazes me...I do NOT feel as if I am being secretly 'counted' for anything here...I think that was an original vision of other entities but because they 'statitized me' I also feel in a way betrayed by those sites.

I KNOW we are being 'watched'..it is by whom and how they use what they read that concerns me. Not only my self, but for those who are more well, OPEN in how they present theirselves...What ever we put on here is, essentially OUT THERE and caution is required no matter how much we want to thro caution to the winds.

On-Line support groups ARE legit...whether docs know it or not...at times medical docs are lazy and don't know or care about such groups....then they RESENT same groups because the participants have had more 'experiences' with such conditions than the docs? WHO won't admit it? DUH?

I truly hope and wish that there could be any vehicle by which docs could tell us where they come from [a'la what THEY hear vs what reports say from US] and US tell them what we HEAR? We truly need to learn better short-cuts or vocabularies for communication! We need to be far more efficient in our ways of 'updating' our docs on what else is going on with us...that all complicates things?

Mind you, I am not frustrated for myself [I've good docs -knock wood quick?] but for others...We should NOT have to suffer egos....systems...processes...whatever! We should be able to learn LEARN how to most expediently convey info in a concise way and get on with what NEEDS to be done...no squirrelling around. Well! Got that out of my system..for whatever good it could do? - Thanks ears! - j

Andy Grove Mad Again
 

Thank you for posting those articles.
I think that it will take more than Andy Grove but he is right.
Peer review and the current way of testing drugs has got to change.

I had schizophrenia up to last year. I threw away all the pills.
This year I still have schizophrenia with 80% fewer symptoms.
The few symptoms I have are improving slowly but steadily.
I am not Andy Grove. I am not Mr Dynamic. I'm a little slow.
A bright person, like Grove, might have recognized
what was happening after maybe two days. It took me 3 years. But
after that time I stopped to listen to my therapist and p-doc. Beyond
recommending drugs that were making me physically very sick they were totally in dark.
They were in the dark 30 years ago and, when it comes to a cure, they are still in the dark.

I am not anti meds. They are a life saver for many, many people. I just couldn't afford to keep paying for what I was getting...which was nothing.

I actually agree with Grove (and you!) in that our current process for vetting potentially helpful drugs and such is too slow and doesn't help people who might benefit from even experimental formulations. There's a lot that can be done to improve the system, and in that sense, I hope he's successful in shaking things up a bit.

One of the areas of shaking things up was the recent introduction of legislation in Congress to require any federally-funded research's results be made available for free to the public (which makes sense, since we paid for it!). This would mean research could be made more quickly and more widely available. The journal publishers, of course, are not happy.

J

I say kudos to the online health communities. I remember my doctor once telling me to NOT look things up on the internet because it would most likely be incorrect. I must say...if I didn't have the information I have gleaned from other people suffering the same illnesses I have/had, I would be blind going into my appointments. Whereas now I feel armed and informed and I think that's a good thing.

Thanks Doc John.