Political Advocacy for CFS - If you want to make a difference

[Curls]

If this kind of action appeals to you, the Cfids Association of America (at www.cfids.org  (notice it's a .org, not .com), sends out advocay alerts.  They've set up an online place where it's easy to send letters to your representatives for each of the advocacy alerts.

Got one this morning, on urging your congress representatives to override Bush's veto which includes better NIH funding.  If I remember correctly from a prior email, this bill has CFS specific language in it that is to our benefit.  It's nearly impossible to get congress to put illness specific language into medical spending bills.

So if you agree and are into this, the links are:

General page:    http://capwiz.com/cfids/home

For this specific bill:
http://capwiz.com/cfids/issues/alert/?alertid=10545356&type=CO

Cfids Associations advocacy page that links to their capwiz page:
http://www.cfids.org/advocacy/default.asp

Also from the capwiz pages you can sign up to get the future alerts.

If you don't agree, of course you can send a disagreeing letter.

So if you've wondered about an easy way to make a difference on NIHs and CDCs budget for CFS, this is it.  Also, seeing the alerts and notices of new coverage (which is also sent out), can give inside into the illness itself.  Over the 10 years I've been a member of the cfids association and participated in stuff I've learned a lot.  

I'm not going to post other alerts, but I wanted to let people know this is an option.

FYI, The CFids association is a major US patient organization for CFS.  They've been invited to serve on the federal CFSAC (CFS advisory committee) for CFS.  They are the ones who blew the whistle on the CDC misappropriation of CFS funds.  

[PlateletGal]

Thanks, Curls ! You know what is funny ? I was thinking about e-mailing this information to you, Chris and others here. I already sent my e-mail to my Congressmen and then forwarded it to everyone I know.

[Curls]

"CFHIV" Very funny, I'm chuckling.  Hey what did you do to be so special -  linked with another illness?  Some of us only have AIYHCFS (all in your head CFS).

I haven't gotten my toy surprise yet - and it's been a couple of years :(.  They don't send out that many alerts, so it's nice that way.

Platelet, can I say "great minds think alike?".  Okay, too cheesy for me, but thanks for the comment.  It's good to know it was a good idea.  I swear the advocacy is what gave me the words to explain to my family and friends so that they'd understand...  

Well, I'm working on learning my body to go to bed at a decent hour, so off I go.  Chris, do you have the CFS night owl problem where you tend to go to bed very late?  And some folks like me wake up early, at about 5 1/2 hours sleep, but too tired.

[PlateletGal]

I hope everyone here saw this thread !  I believe this bill would not only benefit CFS patients, but other patients as well... possibly fibromyalgia.

[Curls]

Definitely this would benefit FM!  It will give NIH and CDC a chance to continue with a better budget.  It's the smaller budget illnesses that get the huge impact when the money is cut.  20% of 4 million is much harder loss on CFS and FM than 20% of 80 million.

[Curls]

Definitely this would benefit FM!  It will give NIH and CDC a chance to continue with a better budget.  It's the smaller budget illnesses that get the huge impact when the money is cut.  20% of 4 million is much harder loss on CFS and FM than 20% of 80 million.