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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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I met Senator Ted Cruz yesterday 10/17/15 shook his hand as well

*GG*

senior member
Messages
6,389
Location
Concord, NH
I mentioned how 1 million people have CFS in the USA and that it cost the economy 30 Billion annually, and that the Gov't only spends 4 to 6 million a year on research. Typing this, I Wish I had remembered to say that people have been suffering for a generation and had mentioned some other statistics on how much funding like male pattern baldness and MS receive in proportion!

I did get all nervous because I was not expecting to do this, there few people around, so pretty sure I got his attention and he caught what I said!?

I am not expecting much from the gov't, because after all, it is the gov't and our history with them is not good.

He mentioned how he had or is proposing a Bill in the Senate to have drugs available in the US within 30 days if they are already approved by other "advanced" countries.He mentioned Europe. Not sure that will help in our case, but it's a step in the right direction for our bureaucracies that take years to approve a drug!

I am making a request to people if you know of a resource(s) to perhaps hand to him if there is a next time, which is a very real possibility, because our Primary for the Presidential election is not until February 2016!

Post a PDF here or post a link to something I can have printed up, best if it is short, not super long! Heard he is highly intelligent, so he's probably a speed reader, but i am sure he is really busy running for President, he's a Senator and has a Family, so something concise would be best I think.

If anything that some of the Private sources are funding have something like this, I would consider giving it to him also, I think those avenues are your best chance of real change in the near future!

GG
 

*GG*

senior member
Messages
6,389
Location
Concord, NH

ahimsa

ahimsa_pdx on twitter
Messages
1,921
@ggingues , Thank you for doing that!

It is so easy to get nervous and tongue-tied, or brain fog, or trouble standing due to orthostatic intolerance, etc., etc.

So it's great that you were able to say those few facts in a row, and then get a response, and then remember it long enough to post it here. Woo-hoo!

Like you, I have very low expectations for any big result from this. However, it is fabulous that you and other folks are reaching out to politicians to try to educate them. I do think that every little bit helps!

:heart: Thanks again! :heart:

PS. I want to add that we don't have to like the politicians that we approach, or support all of their political positions, in order to approach them and ask for more research funding for ME/CFS. I hope political differences never get in the way of our asking for more support for ME/CFS.
 

caledonia

Senior Member