1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
In Brief: The Adrenal Glands and ME
The second in a new series of ‘In Brief’ articles, where Andrew Gladman provides a helpful insight into the science behind fairly common topics, exploring how they relate to ME/CFS. This time he discusses the adrenal glands and why they can be such a talking point ...
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MCWPA Moving Forward: Actions Completed, $ Raised, $ Needed, and Progress Report

Discussion in 'Action Alerts and Advocacy' started by muffin, Mar 24, 2011.

  1. muffin

    muffin Senior Member

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    USA!
    http://www.causes.com/causes/511536-me-cfs-worldwide-patient-alliance

    --->> MCWPA Moving Forward, Actions Completed, Money Raised, Money Needed, and 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

    Moving Forward
    Posted by Tina Marie Miller Tidmore 24 March 2011

    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.

    MCWPA Team
  2. muffin

    muffin Senior Member

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    USA!
    CFSAC Dates Have Been Announced! Get Ready!!!!!

    Here is the latest MCWPA bulletin...By KLMVia muffin

    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.

    http://www.speakupaboutme.org/speak-up

    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:
    http://www.zazzle.com/cfsac_one_side...03612034563670

    Two sided Tee shirt with retrovirus message on the back:
    http://www.zazzle.com/cfsac_two_side...72448071068907

    $150 Million for ME/CFS Research Now button:
    http://www.zazzle.com/mcwpa_funding_...48348114878163

    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:
    http://frwebgate1.access.gpo.gov/cgi...ction=retrieve

    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.

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