ME/CFS Worldwide Patient Alliance - Update on critical campaign

Discussion in 'Fibromyalgia Main Forum' started by puggles, Sep 20, 2010.

  1. puggles

    puggles New Member

    ME/CFS Worldwide Patient Alliance
    To create a patient-driven effective advertisement campaign on ME / CFS, and XMRV, particularly on patient quality of life.

    We now have 1,080 members and over $5,000.00 in donations. We have a new, cool logo and a Big and Fun announcement on 21 Sept. Our Three ADS for the Washington Post will be out soon for review and comments by the members and our website will be up in the next few days.

    But we need more input and ideas! We need more donations to get to the magic $8,500.00 mark for the Post AD.

    Guys: I have been sick for 16 years and was sleeping 22 hours a day for the first couple of years. I also have FM and live in pain. My husband also has CFS and got it when I hit my 10 year mark. He's been sick for 6 years now. I would say this is contagious, wouldn't you? And 16 years later I still sleep from 12 to 18 hours a day. I have never had a "normal" day in those 16 years. Don't let this be you and don't let this happen to your family members. My husband is on the couch and has no energy. We both were hyper, driven people. I sleep, he's on the couch and we have no real life. It's sort of like we are just waiting to die. No drama, just the reality of our lives.

    My husband and I lived and worked in the Washington DC metro area for 20 plus years for me and over 35 years for him. We KNOW how Washington works. We KNOW that a very powerful, informative, hard-hitting 1/2 page AD in the Washington Post WILL get huge amounts of attention from the senior policy makers - YES, that includes the President and VP, as well as all other Federal employees, journalists, muck rakers, researchers, and the public. The Washington DC area is huge and includes the Maryland and Virginia suburbs. There are MILLIONS of people in that area that read the Washington Post every single day. It's the local newspaper for that area. This is where everyone gets their news and ideas of what is going on and how they can use those ideas.

    Both Maryland and Virginia have major bio-technology areas with hundreds of companies looking for the "next big thing". A newly discovered family of Retroviruses that may be involved in CFS, Austim, MS, diseases and cancers - counts as the "next big thing" in Washington talk.

    PLEASE! Hit read, donate if possible, get involved, vote on the ADS that will be presented and be part of YOUR CURE. If YOU don't do it, who will?
    Want to wait another 30 years for this window of opportunity? NOW is the time. NOW.

    ME/CFS Worldwide Patient Alliance
    To create a patient-driven effective advertisement campaign on ME / CFS, and XMRV, particularly on patient quality of life.
  2. puggles

    puggles New Member

    We have entered a brand new era in our disease. We have finally gotten real research done by WPI/NCI/CC and now NIH/Harvard.

    It is time to stop complaining to eachother and start complaining to all those that YOU, as the taxpayer, need to complain to. Help us get this 1/2 page PUNCHY AD into the Washington Post so that everyone in Washington finally sees what is going on with CFS/ME/FM.

    YOU all know that the CDC has done a cover-up for 30 years. That has come to an end. This AD will force the Federal health organizations to finally see what has been going on to very sick people. This AD will get the people in DC who have control of HUGE amounts of money to see what's going on and push to put the money where it must go.

    The newly discovered family of Retroviruses IS in the nation's blood supply and probably has been there for over 30 years. This means that everyone who has had blood transfusions or blood products has been affected. Are you all aware that 7% or 20 million Americans are carriers of this Retrovirus family? That means that this virus is highly contagious and may be implicated in a number of other diseases and cancers.

    Hit the site and join, donate, give your ideas and inputs. Help! Tiny amounts of time are all that is needed. We are all CFS sick people so we do things in small amounts. But we get them done and done well.
  3. skeptik2

    skeptik2 Member

    This group has been really busy and have over 1080 members.
    They have only been working on this ad campaign for about 7
    weeks, and accomplished miracles for YOU!

    They are all patients, many have professional experience in
    what they are doing, and best of all, they allow patients to
    make the final votes and decisions. How many groups let
    us do that?

    A lot of patients are not on facebook, so they are setting up
    a new website so others can become involved more easily,
    so please go to the link above, even though it's on FB, and
    at least read and keep up to date on the latest ideas and
    patient feedback. Read the Goals on the Home Page, so
    you understand what they are trying to accomplish.

    If you are reading this just out of curiosity, I hope your heart
    will know this is the time to help make the public aware of
    your's and many millions of other's plight, especially now
    that there is proof that at the very least, a new human
    retrovirus is contributing in some way to make patients
    with these neuro-endocrine-immune system diseases (NEIDS)!
    very sick.

    We used to have a great advocacy group here: won't you join
    the next one? I have, and I plan on becoming very involved
    in this War against Ignorance on the part of the world! I hope
    you join a part of history!

  4. puggles

    puggles New Member


    In a limited time offer, one of the MCWPA members will match all donations made
    between now and September 30 at midnight EST, up to a total gift of $1,000.


    This means if you donate $100, it will turn into a $200 donation.
    We are getting so close. This may be all that is needed to reach our goal.

    If the $1,000 limit is reached before September 30, we will let you know.

    Post this on your Facebook Wall, spread the word and most of all...

    Donate now and DOUBLE YOUR MONEY.

    As of 21 September 11:30am we have $4,850. (fb) and 1,100 members!!!!!! We just had our first "double your donation" for $50.00. That means the donation is really $100.00!!!! Be the second person to make a matching donation! THANK YOU ALL!

    ME/CFS Worldwide Patient Alliance
    To create a patient-driven effective advertisement campaign on ME / CFS, and XMRV, particularly on patient quality of life.

    [This Message was Edited on 09/21/2010]
  5. puggles

    puggles New Member


    1) Through the cause pages at You can also make a recurring monthly donation. The minimum for a one-time or recurring donation is $10. You will be receiving an automatic e-mail confirming the donation. Causes is a 501c3 donor-fund organization and the money donated through is processed by Network for Good.

    2) If you are not on Facebook and you prefer to donate by credit or debit card, here are your other choices:

    a) Google Check Out -

    Go to P.A.N.D.O.R.A.'s home page at - Please note that because Google has given P.A.N.D.O.R.A. a grant, any associated processing fees through Google are absorbed by Google. If you donate $10 through Google, it will save P.A.N.D.O.R.A. the cost of fund-raising fees.

    b) PayPal - You can donate through the home page of P.A.N.D.O.R.A. Be sure to write in the cause name intended as P.A.N.D.O.R.A. currently has 7 causes on Facebook. Please note that P.A.N.D.O.R.A. is in the process of changing not only the PAYPAL donation page, but also their main donation page too. For now when you click PAY PAL it will say NEI Center, but you can add a note “that your donation is for the MCWPA Campaign.” If you are not able to do add your memo, then please e-mail P.A.N.D.O.R.A. at Please include in the subject line “Donations to MCWPA Campaign." WE WILL ADVISE YOU OF CHANGES IN THE P.A.N.D.O.R.A.’s DONATION PAGE AS THEY ADVISE US.

    c) American Express Members Give™- On this page you can make a monetary donation as well as donate using your AMEX miles. You can donate as little as $5. It can also be a one-time or recurring monthly donation. You can also dedicate your donation as a gift in someone's name or in memory of someone special. There is also a box where you can list the intended program: Add the Cause's name please.

    3) If your prefer to donate by check, make it out to P.A.N.D.O.R.A., Inc. Send it to:

    P.A.N.D.O.R.A., Inc.

    (Patient Alliance for Neuroendocrineimmune Disorders

    Organization for Research & Advocacy)

    255 Alhambra Circle

    Suite 715

    Coral Gables, Florida 33134

    Be sure and mark the check as being for the MCWPA Campaign. Also note if you prefer to remain anonymous, include a note saying so.


    Yes, you can. Whichever way you choose to donate please specify that it is to be anonymously and specify whether you want to receive a letter/receipt from us or not. Please be aware: If you donate through Causes and you have a profile on Facebook, your name and profile picture will be shown whether you donate anonymously (meaning only that the charity organization will not have your personal information for their records). If complete anonymity is important to you DO NOT DONATE THROUGH THE CAUSE-PROJECT PAGE ON FACEBOOK. Send P.A.N.D.O.R.A. a check with a note specifying that the donation is to be completely anonymous with no acknowledgements of any kind from the charity.


    Yes, P.A.N.D.O.R.A. will return these donations to us in the form of an advocacy grant. P.A.N.D.O.R.A. is donating the administrative fees of the Cause Page on Facebook and any additional operational expenses associated with this unique patient-driven fund-raising effort. P.A.N.D.O.R.A. is a 501(c)3. Their number for tax deduction purposes is 550795076.
  6. puggles

    puggles New Member


    Posted at 4:23pm on Saturday 25 September 2010.

    Thank you to all who contributed to the 2-FOR-1 Donation Special. The total that this matching offer raised was $2,166. The amount that our donor brought us up to was $6,883!!!!!

    Although this special is completed, we still need more donations. Go to this link:

    Every dollar will be going toward an AD that reflects the patients' voice. Look for more exciting announcements in the coming weeks. The MCWPA Team.