I can't believe I'm still typing! Somebody stop me!
You know, if Dr Oz includes a bit about XMRV, it could help to deliniate ME (aka CFS, aka CFIDS) as distinct from CF (no S). Much will depend upon production schedule and ability to get Oz in studio ASAP to do standup. They really should pull it from the sched and rethink. They are missing a great opportunity to make a really good hour of TV.
It's good that WPI knows and contacts the Oz producers. It might help that viewers, even a few, contact them but I agree it's a looong shot unless it can be explained how it is in their interest to pay attention.
This is a new show and no one knows if it's got legs yet. While Oz is very popular on Oprah, none know if people want to watch an hour on health every day.
They will be fine tuning it as they go along. I think there have already been changes... fewer body parts, more pets.
They are not bullet proof yet. They may still be quite responsive. Smart producers would spin this into an exciting episode. Dull producers will churn out a soft hour on the benefits of supplements for the fatigued masses.
I don't know who's on his team. We'll see.
Thing is, if we do nothing... we've done nothing.
PS IslandFinn ~ you are too kind, but then, it's the way of your people - all of them!
ETA Great letter Finn; do you think they'll figure out we know each other?
thx - great idea - hadn't seen her - she was fantastic - clear, concise + has that TV charm. Whipped the 1st letter off as thought that was it for the day (but seem to be getting a bit addicted to this forum). May write a 2nd letter
Koan - aw jeez - did I misunderstand? I thought part of why you posted the letter was so that brains like mine that are slower tonight could cc or piggy-back off your hard work. If I did get it wrong, I'm sxxxxy (you know - the 's' word - and no - not 'sexy' or 'sixty'). I did try to address that in my letter by saying that I had used your letter as a platform as I was tired.
Love that you included the links for them to see.
btw - waht does eta mean in this context? i only know estimated time of arrival - extra to add?? Ya know - before this forum I had never used a short form or a smiley face in correspondence -wheeee I'm living it up!
Koan, you're keeping me up too late! You said you were going to stop two hours ago at least! I'm glad you haven't stopped, though. Your letters to Dr. Oz are really well done. So now I have to go check out the lounge? I think I'd better wait until tomorrow.
Hey you guys! Since you're all obviously going to be up for a while....and I"M NOT!
I was just thinking - and I hope (REALLY REALLY hope) this isn't a dumb idea.....what about a carefully written letter to one of those "dear Abby" type columnists "breaking" the news and filling in the most important details.
The details and spin on the facts that we know are crucial to understanding. Sort of a heads-up for Chronics everywhere that may not have gotten the word, as well as the general public.
You know, if I hadn't been a member of this site (and I actually haven't been one for very long), I'm not sure that I would have heard the news yet. No on I know has brought this up (but me!).
Not everyone has access to a computer, monthly mag subscriptions or even more than a perhaps small local newspaper. MY little local paper has published ZIP about this - and I've checked everyday.
But many folks flip through the paper and read the advice columns, right? And I know I've read letters from various groups representing other serious illnesses over the years.
In fact, the open letter could STRESS the lack of readily available, easy to understand CORRECT information and the way ME/CFS has been sometimes mis-represented and misunderstood (in a most POLITE and POSITIVE way, of course!) and add in the newest info on XMRV.
A sort of public service announcement - just the facts, maam! But better than a letter to the Editor.
So....bad idea - ok idea? And WHO'S gonna do it???
It ain't me, babe - 'cause I've got a date with Mr. SandMan
Note to self: suggest this idea tonight - because you'll have forgotten it by tomorrow
HELLO EVERYONE--I see a page worth or more of new posts since yesterdat afternoon, that I am just too fried to read (bad night sleeping---only 3 hours, going back to bed after this post). But I do want to thank the supporters here for their support, which is much appreciated. I got a note back from WPI media contact person yesterday eve, and here's what it said (below). I will check in later to see what NEW NEWS follows suit.
Thank you for the email. We have identified some producers for the show and will contact them first thing tomorrow. They are located on the east coast and I'll have better luck when I contact early in the morning.