NY Times / Health / Patient Voices: all but ME/CFS

[Rafael]

They feature more than twenty chronic conditions
... they do include Fibromyalgia, and Restless Leg Syndrome, and Psoriasis, etc.

http://www.nytimes.com/interactive/2009/09/10/health/Patient_Voices.html

but no patient voices for ME/CFS.

I think I'll write in to NY Times, anyone else ?

 

[paddygirl]

They feature more than twenty chronic conditions
... they do include Fibromyalgia, and Restless Leg Syndrome, and Psoriasis, etc.

http://www.nytimes.com/interactive/2009/09/10/health/Patient_Voices.html

but no patient voices for ME/CFS.

I think I'll write in to NY Times, anyone else ?

I think this is an excellent resource, it did strike me that many of those patients sounded as if they have ME/FM with the levels of fatigue they report. I think the label you eventually get depends on the doctor that diagnoses you and his own personal bias. I'll be forwarding this to people I know with other conditions. How sad that so many are so young, but still fighting this monster.

I like the young woman who wants a live-in acupuncturist hairdresser and maid - maybe one talented individual could do it all - my favorite would be a book keeper and landscaper in house.

Thanks for posting this x

 

[meadowlark]

Great idea, Rafael, and greetings from another Ontario sufferer.

I will happily write, but our letters should go the same person ... would it be the editor of the Health section? And what is the estimated number of sufferers in the U.S.? (Just want to make sure that if my letter mentions a number, it's the right one.)

 

[Rafael]

I didn't know there were meadowlarks in Toronto. I'm out in the sticks.

There was a "Send Feedback" part at bottom left on the main page (the one link goes to) so I went that route.
I just told them that their concept was a very good one.... but that I was personally disappointed that we got left out ... and why we really could use increased awareness.

 

[meadowlark]

Thanks, Rafael. On my small macbook, that "Send Feedback" link was awfully tiny. I just sent my feedback.

Lots of meadowlarks in the prairies, where I used to live!

 

[LJS]

Thanks, Rafael. On my small macbook, that "Send Feedback" link was awfully tiny. I just sent my feedback.

Lots of meadowlarks in the prairies, where I used to live!

I also did this, keep it up folks.