• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Please Donate to Keep ME Advocacy Alive!

caledonia

Senior Member
HHS Made The First Move and We Responded

The IOM. The P2P. The CDC multi-site study. A year ago, the HHS launched a series of redefinition efforts for ME/CFS designed to impact us negatively for decades.

This highlighted more than ever the need for patients to get involved in advocacy.

Accomplishments

Seven months ago we launched ME Advocacy.org. We have rapidly become a community of over 550 members and 4000 social media contacts, all who are interested in taking action on issues facing ME patients.

Together, we have supported 19 advocate campaigns.

If you believe this website is a valuable resource and wish for us to continue assisting patients and stakeholders like you with advocacy, publicity and community building efforts, please donate.

Future Goals
We have very exciting plans to hire a public relation firm to help us bring national attention and sympathy to our cause - including demonstrations and appearances on national tv, radio and press. But we can’t continue unless we get site operations funded first.


Please Donate
The campaign runs now through November 6th, 2014.

Click here to donate: https://meadvocacy.nationbuilder.com/donate
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I see you've already got $1,450 of the target of $2,000 raised - this is very doable.
 

caledonia

Senior Member
Update and Last Call for Donations - Thursday Nov. 6

Many thanks to everyone who has already donated. We are just $400 short of our goal of $2000. If you've been meaning to donate and haven't gotten around to it yet, this is it.

Please help us continue to fight the IOM and P2P. The deadline to donate is Thursday November 6 at midnight PST.

Please share this message with your network (email, forums, Facebook, Twitter).
https://meadvocacy.nationbuilder.com/donate
https://meadvocacy.nationbuilder.com/donate
 

caledonia

Senior Member
@caledonia no donations needed after the Nov 6 deadline?? This was one of the many tabs I don't return to in a timely fashion...thx.

Thanks for remembering us! Of course, we can always use donations, but we did well enough that I felt it was ok to start on the next campaign, which is a very exciting national PR campaign to put even more pressure on the HHS.

The new page is here: https://meadvocacy.nationbuilder.com/donatepr

I haven't quite starting sending out promo yet, but it should be working and able to accept donations. Let me know if it doesn't.
 

catly

Senior Member
Messages
284
Location
outside of NYC
@caledonia I read you plan, it is very ambitious, but I think it's probably too late the stop any of these inaitiatves (IOM, P2P and CDC study). Perhaps what we need to be preparing for is dealing with the outcome of all of them.
 

caledonia

Senior Member
@caledonia I read you plan, it is very ambitious, but I think it's probably too late the stop any of these inaitiatves (IOM, P2P and CDC study). Perhaps what we need to be preparing for is dealing with the outcome of all of them.

Yes, that is also part of the plan. The PR can be used to counteract whatever HHS is disseminating.