• 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, 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.

MCWPA Moving Forward: Actions Completed, $ Raised, $ Needed, & Progress Report

PLEASE Read so everyone knows what MCWPA has done and is going to do. So much done in so little time and yet more to do especially in the next couple of VERY critical months. Read and get involved in any way possible!

2,172 Members as of 25 March 2011 - MCWPA started in August of 2010!!

Moving Forward
Posted by Tina Marie Miller Tidmore 24 March 2011 via Muffin

The MCWPA team is moving forward with the actions you said you wanted to accomplish in the first half of 2011.

Next action:
In the January survey, sending letters to other patient organizations that are now linked to XMRV was high in the survey response. So we are ready to start on that. The first and obvious one is prostate cancer. We would like to ask for any patient who would like to help in writing this letter, please contact us at volunteers@mcwpa.org.

Action Completed:
Doctors Need to Know (report- we were informed of people all over the world who mailed letters to their doctor. Over 1,000 viewed the instructions on the MCWPA Patient Discussion board.)

Money raised for actions:
We have the money for the press release to be distributed internationally through a wire service of the next big biological finding. It has been "pre-written," waiting for the published study. We have the money for the Public Service Announcement to be distributed to cable networks in May.

Money needed:
We need $1,450 more for the print ads on May 12. (Goal for this project was $3,000 - total of 20 ads with the MCWPA contribution on each being $150.)

To make a donation, go here: http://www.causes.com/causes/511536-me-cfs-worldwide-patient-alliance

Progress report:
We have at least four planned submissions for the Public Service Announcement contest. We hope to have examples posted for patient feedback next week.

Please read all bulletins so you don't miss the opportunity.



Klmrav - Yesterday 12:03 AM - repeated by muffin - GREAT STUFF!!!!

Here is the latest MCWPA bulletin...

CFSAC Dates Have Been Announced!

The Chronic Fatigue Syndrome Advisory Committee will meet on May 10th and 11.

We previously announced the Speak Up About ME Young Peoples effort initiated by Denise Lopez-Majano and other advocates, here is the link.


If you know of any young ME/CFS patients, please let them know about this important event.

In keeping with the Speak Up About ME theme, we are also offering two tee shirts options and buttons for the adult CFSAC attendees and other May 12th Awareness Day supporters. The two-sided shirt costs more, but speaks of the retrovirus on the back.

One sided Tee shirt:

Two sided Tee shirt with retrovirus message on the back:

$150 Million for ME/CFS Research Now button:

Please note that there are many tee shirt options available (mens, womans, fitted, loose, short sleeve, long sleeve, etc.). I do not recommend the Value Tee for quality reasons. I am ordering a long sleeve tee so that it can be draped over the back of my chair in view of the camerahehe.

If you order your tee by 3/31, Zazzle has a discount code for $5 off: STPATSDEAL11

Or for 10% your entire order, use discount code (good through 6/30): 10ZAZZLE2011

Lets fill the room!!! Invisible No More! Silent No More!

Here is the link to the CFSAC Meeting Announcement:

Dont wait to request a time slot for your testimony (in person or on the phone). If you are an adult, please ask for the 10th, we are trying to leave open the 11th for the young patients.

Cant make it to DC? Details for May 12 Awareness Day actions, that can be done on the local level or from your bedroom for that matter, will be forthcoming.
Hi Muffin

Can you tell us where the prind ads will be published? And where will the PSA be aired? I don't know how TV works in the USA.

I donated a small amount through the causes page to help with the May 12th ads. Thanks for all your hard work.
Eric: Will get you more info on the Print ADs soon. Sorry about that, trying to multi-task and failing miserably.

Camas; Thank you for donating. All amounts are great! Remember we need help in big and little ways. So if anyone has time and energy please contact Tina Tidmore at VOLUNTEERS@MCWPA.ORG - CHEERS!

Your Voice on Public Service Announcement

Posted by Tina Marie Miller Tidmore at 10:25pm yesterday

The MCWPA team is pleased to announce that five entries have come in for the public service announcement contest. We are now inviting the patients to go to the Patient Discussion Board and give their feedback between now and April 3 at midnight EST.


You will find it under Print and Video Advertisements with each entry having a separate thread.

After April 3, the contestants will decide what, if any, changes they will make. And then you will be able to vote on which one you prefer.

This PSA is going to be distributed to T.V. stations around the nation. A letter is being prepared now to be given to patient organizations asking for help in getting the PSA to the cable companies. We would also like to have print advertisements in newspapers across the nation that is designed in a similar look and message to the PSA that wins the contest. MCWPA will be giving $150 per advertisement in co-op money with local organizations pay the balance.

Our goal for the print ads is $3,000 for 20 of them. At this point, we need $1,400 more.

Action request 1: Please post this message on Facebook, message boards and every other place on the Internet you can find to get more input. We would like to see this blasted everywhere.

Action request 2: Please donate at least $10 toward this cause.


Blog entry information

Read time
2 min read
Last update

More entries in User Blogs

More entries from muffin