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BIG THANKS to the #Millions Missing protest organisers!

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A big thank you to all the San Francisco organizers, and to Carol Head, Ron Davis and Janet Dafoe for their moving and informative talks. We very longtime sick do survive mostly on hope, and I began to see a bit of light at the end of the tunnel.

Also, thanks to someone named Kim who offered her backpack as a pillow when I was crashing badly. :):):)





Edit: Added pic of Carol Head and Linda Tannenbaum,
 
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JaimeS

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I hope they do it every couple of months....this is how AIDS got more funding right away....

With stats from Leonard Jason:

13% work Full time
Less than 20% part time
25% housebound bedridden
And eveyone in between seems to me like the in betweeners are likley mostly housebound or only able to get out briefly for just the neccesities...thats my guess...with a portion of complete relapse recover relapapse etc.

Regardlesss the stats aren't good....

The protesting needs to be in peoples faces constantly in order to be effective grow to more states and provinces....etc..

We Desperately need a center of Excellence.
@Justin -- if you are referring to Jason's most recent paper, my understanding is that the stats are worse than that: 13.6% can work at least part time -- meaning that this encompasses both part-time AND full-time workers.

However, let's be scientifically clear; these people were gathered from CFS support centers and ME clinics, so you'd have to be at least seriously concerned about your health to be there in the first place. I know two people diagnosed with "CFS" who continued to work FT; only one ventured to a support group. The other just kept 'pushing through'.

So, to be fair, these stats may come from a group that focuses on mild, moderate and severe, but leaving out the 'very mild' population... which does exist.

-J
 

JaimeS

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I work "full time" but the accommodations to work from home and flexibility is great. I wonder how much flexibility the ones that are able to hold down a job have. Or that work is all they can do (no personal live at all).
I'm almost up to full-time again, @lnester7 , but like you I work from home. Even that I had to take slow and see how much I could handle. It's been a slow, SLLLOOWWW climb back up.