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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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California Activists

JT1024

Senior Member
Messages
582
Location
Massachusetts

NK17

Senior Member
Messages
592
Andrew I'm in Cali, not in the "best" of shapes, but very interested in raising some interest ;).
 

Gingergrrl

Senior Member
Messages
16,171
@Andrew I am in CA too but not in good enough shape to do any advocacy right now. Can you explain what you were wanting to do so I can be involved in the future?
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
All I had in mind was us contacting the two senators in the same month. If anyone is game, let me know. I'll show you where the interface is. If you are in, just post here saying you are in. I don't have enough health vitality to chase after people.
 

Gingergrrl

Senior Member
Messages
16,171
@Andrew I would definitely be interested in contacting our two senators if you can give me some guidance of how to reach them and what to say. I can write letters by e-mail or on paper, just let me know.
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
I decided to put some other stuff on the back burner. Here is how to contact our seators
Senator Dianne Feinstein (D- CA)
DC Phone: 202-224-3841
DC Fax: 202-228-3954
Contact Form: https://www.feinstein.senate.gov/public/index.cfm/e-mail-me

Senator Barbara Boxer (D- CA)
DC Phone: 202-224-3553
DC Fax:202-224-0454
Contact Form: http://www.boxer.senate.gov/en/contact/policycomments.cfm

This week figure out what you want to write or say. The purpose is to stop the IOM contract. It might help you to have a link to the expert letter: https://dl.dropboxusercontent.com/u/89158245/Case Definition Letter final 10-25-13.pdf. And then next week we will all submit what we have.

Can any of you commit to this, barring a serious health crisis?
 

Gingergrrl

Senior Member
Messages
16,171
@Andrew, Is there a deadline for the letters? I'm preparing to travel up north for my appt at Open Medicine Institute and trying to get all my medical records/forms in order. I am still not staying in my own home (due to mold repairs- long boring story!) and the next two weeks until my appt are crazy for me. But I would love to focus on advocacy, letter writing, etc, once I am back from this appt (closer to the end of July.) Is this too late? I don't know the details of the contract and have not read your link yet.
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
If you get it in the end of July, I think that will work. It will be within 30 days of mine. I'm going to send mine next week, which is the beginning of July.
 

Gingergrrl

Senior Member
Messages
16,171
@Andrew, I will aim for the end of July and when I get closer to that point (after my appt up north), I will clarify with you how to proceed.
 

Gingergrrl

Senior Member
Messages
16,171
@Andrew Mine will have to wait until after my trip but when I get back, I will ask you more about it so I do it correctly!