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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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ME/CFS Worldwide Patient Alliance (MCWPA) is BACK! We need your input and ideas!

We did it! We got that 1/2 page Ad out into the Washington Post and do believe that that AD gave the Federal health organziation heads and policy makers a rather big shake up. We are seeing changes for the positive and we are being treated differently - more respect and not being ignored. I think we proved to the Washington policy crowd that we are indeed a major force to be dealt with and that super powerful AD was proof of this. IF we could put out an ad such as that in the nation's major newspaper, The Washington Post, then what more will we be doing that scares them?

Good question. What more will we be doing? We have come up with many ideas that will be posted on the Facebook Causes site and also on our www.mcwpa.org site. Please review and make comments. We will again ask you to vote on what YOU want to see done next round. Remember, YOU the members are the decision makers on what MCWPA does. And you all did a fantastic job on that AD.

Please hit the MCWPA Causes site at: http://www.causes.com/causes/511536?m=f042604e and also the www.mcwpa.org website. The website continues to be populated with outstanding research that everyone can reference. There is also a forum for YOUR ideas, input, and when the time comes - voting on what you all would like to see done.

MCWPA is the media organization that pushes the messages of the ME/CFS sick out to the public, journalists, policy makers, researchers and everyone else. That's ALL we do - MEDIA CAMPAIGNS to get the attention that we should have gotten 30 years ago.

We hit the ball way out of the ball park with the Washington Post 1/2 page AD. Now, let us see what next we do to get more messages out for funding for research and grants to organizations like WPI.

Get back in the saddle guys!!! Time to ride!



I'd like to see an effort directed at Private Disability Carriers and the legal system.

See Linda Nee's Website for standard operating procedures of all disability carriers:

ALL Disability carriers conduct their "business" with bad faith and the legal system is bad faith by legal definition.

The Attorney General's of all states, legal system and corporations are all one and the same.

What they all do is called organized theft from the disabled, wire and mail fraud, legal fraud, etc.

Change that and then maybe this will mean something.

All the AD has done is changed the propaganda machine from plan A (ignore and ridicule) to plan B (feign concern and ignore and ridicule). That is movement but not exactly in the direction desired.
No, the AD caught the Federal government off guard and showed them that there was a very powerful force out there watching and making demands. We scared the policy makers. I lived and worked in DC for decades so I am aware of what their reaction to that AD in the Washington Post would be. They know that the very top senior policy makers read the Post. Congress reads the post. Journalists read the post.

We are on top of the government so that there is NOT a Plan B of "feign concern and ignore and ridicule". That's a game we were all aware of but also knew we had to keep punching and scaring the government to get them to do what we want. We have many different campaigns in the works right now that keep beating on the Federal health orgs. We are also out there in the public arena which gets the public alerted and involved and that too puts pressure on the Feds.

I believe when you see the funding changes for research, clinical trials, etc. THAT will be proof that the government has taken us very seriously. It is a matter of "show me the money" and we are pushing hard to get that funding.

Join us, be vocal about what you want (demand/deserve) from the Federal orgs and do not stop. We now have the massive INTERNATIONAL horsepower to get what we want and we won't stop until we have what we want. We won't stop beating on the governments and they all very much know that. Putting a hard-punch like the "New HIV-Like Virus in the Blood Supply" got attention. It scared people. It scared the Feds. And the Feds know more and more is coming at them. So, Plan B won't work and we won't allow the Feds to play with us. No more of that. Now we hit hard and will continue to hit hard and won't stop.

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