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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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muffin

Senior Member
Messages
940
Deadline is Sunday, January 23 EST - Please Give Input and Vote!

Time for more Action ME/CFS Worldwide Patient Alliance (MCWPA)

Posted on Monday, January 17 - Deadline is Sunday, January 23 EST

We are getting ready for more action. Since MCWPA is patient-driven, we are asking you to tell us what is important to you, what you want us to do. Remember, most of these actions require donations, so please continue to donate through our facebook cause page.

Here is the survey: http://survey.constantcontact.com/survey/a07e3aethclgj1yn75k/start

The deadline for the survey is January 23 at midnight EST.

MCWPA Team

http://www.mcwpa.org or http://www.causes.com/causes/511536?m=f042604e
 
Messages
5,238
Location
Sofa, UK
There are some great ideas there! Thanks to Muffin and Tina and everyone else at MCWPA - good to hear you're winding up for another campaign after a well-deserved break.
 

muffin

Senior Member
Messages
940
Tina Tidmore posted this elsewhere but I fear it will be lost in the tons of posts. As you all know, MCWPA requested input from members as to what they wanted MCWPA to do in the coming months. All ideas and input were compiled and Tina and advisors set about to put the ideas that seemed to have a common theme together and posted them all for voting. Provided below is the Survey results on what members want to see done. Please also see our Causes site and our website.

Survey results are in:

-Top five are: Send press release announcing next big biological finding in ME/CFS- 67%
-Public service announcements to be aired on T.V. and airports- 50%
-Support "Doctors Need to Know" information campaign- 49%
-Design a print ad and give coop money for orgs to run May 12- 35%
-Send letters to patient organizations of other illnesses associated with retrovirus- 35%

So the members have given their input and have taken the survey as to what they want done. A true Democratic Advocacy at work again!
Thank you Tina and thank you to those members that took the time to respond and give their ideas. THIS is how real advocacy is done!
Remember: WE, the MCWPA members, already threw a major punch into the governments and public. Now let's back it up with a few more punches.