If you're a casual reader here, you may wonder why you frequently find posts about seemingly obscure neuroimmune disorders on what you thought was a band blog. Or, you might wonder why I keep talking about music on an ME/CFS blog.
You're in luck: I've created permanent pages that explain everything.
Cinder Bridge FAQ
About ME/CFS
Both of these are in handy FAQ format. People seem to like reading those, and I have way too much fun making them. Enjoy!
7 comments:
Uh huh! I thought it was a band blog that occasionally morphed into Medical Minute. Thanks for the explanatory links!
Am I to understand that you, like me, have CFIDS? Did I know that and forget, or is this news to me? :-/
I think it is great that you blog about it! Also, you make me want to get a banner to put in my farmer's market booth for my mandala greeting cards that says,
"SPARK awareness
for ChronicFatigueImmuneDysfunctionSyndrome
www.cfids.org"
I can hang it in the back of my canopy!
What do you think?
Judy
No, I don't have ME. I know somebody who does.
I like the idea of a banner that you can put in your booth. I'm not the world's greatest fan of CFIDS.org, though. Maybe a tagline that gets across how awful the disease is ...
Glad to hear you don't have this dd!!
Funny you should say that about cfids.org as I have not been thrilled with them either.
What CFIDS org do you like, if any?
Judy
I like the Whittemore Peterson Institute. True, they're a research organization and not an advocacy group per se, but they're doing more good for people with neuroimmune disorders than any other institution I can think of. There's decent information on their FAQ, as well.
Oh. Unfortunately, Peterson's clinic let me fall through the cracks. I applied for help in 2005, was told it would be a 6mo.-1yr. wait, but never did hear from them. In 2006 and 2007 I called several times, wrote a couple letters, and even my doctor at the time wrote them a letter on my behalf. All were ignored. I gave up. Didn't leave me with a warm-fuzzy feeling, ya know?
Judy
Sorry to hear it. He's not connected with WPI anymore, though.
The new WPI clinic will only be able to see a tiny fraction of the people who need help. However, they want to partner with other physicians so that people who can't go to WPI can still receive care ... and don't have to educate their own doctors all by themselves.
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