Discussion in 'Fibromyalgia Main Forum' started by puggles, Aug 16, 2010.

  1. puggles

    puggles New Member



    Please see the Facebook page located at:

    A group of ME / CFS patients and patient advocacy organizations are forming a patient-driven advertising campaign to address problems in medical care and access to social services. This will be a bold, yet responsible campaign calling for a change. We already have other organizations that have shown interest in signing the advertisements, as a joint message.

    As you may know, XMRV news is an opportunity for us to take ME/CFS into the public consciousness. We want to capitalize on this new discovery to create change. We will carefully frame the message to not inflame fear but to create awareness of the problems people with our illness face.

    Recent changes in policies at some government agencies, we feel, will create a no-win situation for patients filing for disability and does not take into considering much of the research that has been established with our illness in the past 20 years.

    If you want more details on the situation that prompted this, either read the Facebook page or let me know. Contacts for this critical campaign are provided on the Facebook page in the “Administrators” section.

    We ask that you take a look at the project and see if you can lend your support. Please consider helping us in the following ways:

    • Donate
    • Get others associated with your group to donate
    • Get friends and family to donate
    • Offer your skills, time, energy or resources
    Please go to:

    You will notice that in a little over a week we have raised over $1,200 and membership is over the 750 mark. These numbers show that this initiative is what the ME/CFS people believe is needed NOW at the most critical point in our disease’s history.

    If you would like to donate but not through Facebook, then you can do so through the PayPal link at PANDORA's site The PayPal link is at the top left of the home page. All donations made through the PANDORA PayPal link will funnel money straight through to this campaign. The PANDORA site already has the infrastructure in place including the PayPal account. When using the PayPal account on the PANDORA site, please ensure that you put "Our Voice, Our Message, Our Lives" in the description. This ensures that donations go to this media campaign. The hardworking folks running this Campaign are getting the Paypal link fixed on their Facebook site, but until that point, please use the PANDORA PayPal link.

    Thank you all for making a donation and becoming a member for this super critical national media campaign. Keep an eye on the Facebook page for this campaign as there are updates from the Administrators and you can watch the members and donations climb - and climb toward the goal of getting a strong message out at this super critical point of time

    Be sure and enter "Our Voice, Our Message, Our Lives" in the Description to make sure the money will go to this campaign. We welcome other organizations setting up their own donation fund for this campaign. Contact our Administers for transferring donations to this media campaign. Thank you!!
  2. puggles

    puggles New Member

    As many of you know, the FDA and NIH XMRV studies are coming out this month (it is expected) and they are also expected to back up the findings of the Whittemore-Peterson Institute's (WPI) positive findings of XMRV in the upper range of the 90s. There are also between 3 and 7 % of "healthy" people who are believed to be carriers. Doing the loose math, the number of sick and carriers worldwide would be somewhere between 200 MILLION and 400 MILLION People. Those are terrifying numbers.

    I know we all get hit with requests for donations and we all wish that we could give money to those many organizations that so badly need money to help. This particular campaign WILL bring the needed attention from the President of the US, the VP, Congress, journalists, Federal employees that need to know/understand what CFIDS/ME is (SSA Anyone?), Federal employees that deal directly or indirectly with CFS/ME and soon, XMRV. Investigative organizations and muck rakers are also reading the Washington Post to see what is going on and what dirty little secrets are out there not be taken care of.

    I lived in Washington DC for about 25 years. I know how that city works. I also know that just about every person in the Washington DC, Suburban Maryland and Virginia areas reads the Washington Post. Others also read the Washington Post online - across the world.
    But, it is the very senior policy makers in Washington DC that this 1/2 page advertisement is targetting.

    Please. Join as a member and if possible, donate anything you can. Now is the time. As soon as those positive Federal health organizations hit the public with a positive XMRV - and as expected even stronger and more powerful than what WPI has found, the advertisement will prove to be super critical. So you see, NOW is the time to donate so that these good people can lock in rates and have copy ready to go for when the FDA/NIH study hits the streets.

    These people are working so very hard. They have professionals doing the graphics/logos, text - all CFIDS sick people so that every single cent goes to getting the Washington Post advertisement.

    Please see the Facebook page located at:

    This is just too critical a time to let go of. Basically, it is now or never...
  3. puggles

    puggles New Member

    the WPI and other researchers will benefit from this.

    Please donate anything you can.

    Remember, what goes on in Washington affects everyone in the US AND the World!!!!!


    < [This Message was Edited on 08/20/2010]
  4. puggles

    puggles New Member

    ME/CFS Worldwide Patient Alliance!!!!


  5. Debra49659

    Debra49659 New Member

    thanks for the information I check it out:)
  6. skeptik2

    skeptik2 Member

    It is pathetic that there is no response but one!

    This used to be a strong site for advocacy and plans for ACTION.

    Now I see one after another patiently telling and retelling woes,
    which all of us have, and I no longer see the will to be a part of
    anything important.

    Many have no money; however, many here do...they will benefit
    from this campaign, but they are not contributing their fair share,
    and it makes me heartsick.

    Please, PWC/FM, take time to look at the exciting work this
    Cause on Facebook is doing: you will be glad you did...

    PUGGLES: I think a better Title of posting would attract more
    attention. Like: HELP IS ON THE WAY!

  7. KnightofZero

    KnightofZero New Member

    I really like this idea, but how do you be concise and yet hit every essential point in a way that will make people want to read and re-read the ad?

    That's the a snag that I think may be a problem depending on how the ad is designed & laid-out.

    thanks for posting!
  8. skeptik2

    skeptik2 Member

    There will be more than one ad; each ad will cost....therefore, please donate,
    as each little bit will get more info out to those who will need to know that
    they, too, can become infected at any moment.

    Some very skilled ad people are working on me, it will be GREAT!

  9. puggles

    puggles New Member

    Please join and donate!!! We are up over $3,000 and moving quick! Please look at the new logos and vote! Remember this is a patient-driven campaign and this gives ALL OF US a voice.

    Please note: Everything that goes into this Ad campaign, logos/slogans/text for the Ad, etc. is presented and then discussed and voted on by the patients. So every single sick person is involved. We need your ideas as well for fund raising!!!

    Please hit this site and see what's going on. Updates are daily and things are moving fast. There will be a website for this Ad Campaign in the next week so that people not aware of Facebook will be aware of this massive campaign. This is a HUGE and ongoing effort and one that WE THE SICK must be involved in. Make your voice count for once in your illness!

    Join and if possible, donate any amount. There are a number of ways to donate listed on the site. You do not need to go through Facebook, look for instructions from Marly Silverman on the many different ways to donate including Paypal, via the PANDORA Site (but note the money is for the AD Campaign so that it get to the campaign), and other routes.

    We need more money to get that 1/2 page Advert in the Washington Post.
    The Post is read by every person in the Washington DC metro area including Northern Virginia and the Maryland suburbs. Senior policy makers read the Post - The President, VP, senior Cabinet and heads of the Federal agencies read the post. This AD in the Washington Post will get more money for WPI and other researchers than if you were to give them the $10 directly.
    We also believe that this Ad will be the match that starts fires in so many areas in the areas of CFS/ME, the newly discovered and most probably deadly FAMILY of Virus(es) that may (are most likely involved in) leukemias, lymphomas, breat/prostate cancers, Atypical MS, Austism, and other diseases and cancers.

    This disease and the virus(es) found both in the mid 1980's and now by WPI/CC/NCI and FDA/NIH are more complicated than originally believed. We must have more research money and we must have a public and government(s) that really understand all that is really going on with our disease and these Retroviruses.

    This is our shot. Please help us get the money for that Ad in the Washington Post. And yes, my money has gone where my mouth is - I have given to WPI and I have given to this Ad campaign so much that I have no more money for other charities that I did (want to) support. But NOW is the time to strike, so my money is going to this campaign.

    Go look. Read, Join and/or donate. This is are only real shot. Please let's not lose this opportunity.
  10. puggles

    puggles New Member

    I don't know that people are understanding what this is all about and how it will have a MASSIVE impact on them, their families, other sick with CFIDS/ME/FM as well as the cancers we see in very high proportions in CFIDS. These Retroviruses, yes there are more than one, may well be the cause of Autism. Why is the rate of autism through the roof in the last 20 or so years??? Why are the doctors seeing the once rare lymphomas and leukemias in far higher proportions in us CFIDS sick? Viruses are well known to cause cancers and these Retroviruses may well hold the key to curing/preventing CFIDS as well as other diseases and cancers.

    Research on Retroviruses was killed off by the CDC and NIH back in the early 1990's. The CDC damaged the work of Dr. Elaine Defrietas/Bell/Cheney and then there was NO MORE FUNDING for any Retrovirus research until the WPI took it on.

    Let's get this super critical message OUT and get funding for WPI and all the other researchers involved in CFIDS/FM and the other diseases/cancers that may well be caused by a Retrovirus.
    It is beyond criminal that our government killed off valuable research on our disease but in killing this retrovirus research off, they may well have killed off research into other diseases and cancers - and that is inhumane. How many have been sick and died because of this?
  11. puggles

    puggles New Member

    hit the link and read what 900 members are involved with right now. Thank you.
  12. puggles

    puggles New Member
  13. skeptik2

    skeptik2 Member

    danger to the rest of the world!

    We must support this Cause (ME/CFS Worldwide Patient Alliance)!

    How many times have I complained no one understands, no one
    knows my pain?

    How many times have I asked myself if I want to continue on this
    way? And then decided just to have HOPE?

    Well, HOPE is on the way.....IF WE MAKE THEM DO THE WORK!

    This campaign will highlight, in a series of ads, the vital importance
    of our government funding massive research into XMRV and the other
    mouse (murine) related viruses found in the FDA/NIH STUDY!


  14. rose515

    rose515 Member

    Thanks for info. I checked it out.
  15. puggles

    puggles New Member

    Tina told me about a group that used the Washington Post to highlight the Adult Services section of Craig's List as bringing young women into forced prostitution. Well, it seems that this AD in the Washington Post DID its job and got Congress and others involved. The Adult Section is now shut-down. HERE IS PROOF that using the WASHINGTON POST to get a very critical Advocacy/public health issue out into the public, Congress, journalists, policy makers, etc. does indeed get the attention and action needed. Please join and donate. We see this AD campaign works.

    *Craigslist Shuts Down Its Adult Services Section* Collins ContributorAOL News (Sept. 4)

    – Craigslist, the classified ads website, took down its "adult services" section after criticism that it enabled prostitution.
    The adult services section, which previously contained solicitations for sex, has been replaced on the Craigslist homepage with a sign saying "censored."
    The section is still open for people browsing the Web from outside the United States, CNN reported

    .-->>> Last week, attorneys general in 17 states wrote an open letter to the website's founder Craig Newmark and CEO Jim Buckmaster, urging them to permanently close the section.
    "Ads for prostitution -- including ads trafficking children -- are rampant," the letter said, according to CNN.

    Craigslist did not immediately respond to e-mails from AOL News seeking comment.
    The adult services section has been a huge money-spinner for the classified site, even in a sluggish economy.
    According to an April report by media consultancy the AIM Group, Craigslist's adult services section accounts for 30 percent of the site's total revenue -- an estimated $36.6 million in 2010.
    The website "turns so much profit that it's a gold mine for its owners," Peter Zollman, founder of the AIM group, said on the company's website.
    Still, Craigslist had endured biting criticism for a range of sources for openly advertising sexual services on an easily accessible site that is commonly used to rent out bedrooms and sell old furniture.

    -->>>>> The attorneys general highlighted a letter that appeared in the Washington Post in which two girls claimed that they were sold for sex on Craigslist.
    Rep. Jackie Speier set up a House Judiciary Committee hearing to look at how websites such as Craigslist are used to "facilitate criminal activity," the San Francisco Chronicle reported.
    Speier claimed she had met with a minor who was pimped via Craigslist and forced to have sex as many as 10 times a night.
    "It's a crime against these young women," Speier said.<<<<-----

    Craigslist describes itself as having a "relatively non-commercial nature, public service mission, and non-corporate culture." Still, the company is a for-profit and has fought back against claims that it facilitates exploitation. Founder Craig Newmark highlighted that the site has 50 million users, and that the crime rate was "very low."

    "We just don't tolerate (illegal services)," Newmark told True/Slant in April.
    Buckmaster, the company's CEO, also wrote a blog posting in which he said he hoped that the people behind the trafficking of the girls mentioned in the Washington Post were "behind bars."
    Sympathy for Craigslist regarding the closure of its adult services seems muted. In a comment on an article in the San Francisco Chronicle, one poster dismissed their "self-righteous attitude."
    "Whenever somebody dares to question them about anything they do, they get defensive and spout off about how virtuous they are," the commenter wrote. Craigslist "provides thieves and scammers with an online home, and enables a lot of unsavory activities."

    ->>>These are the important sections on the story below about a group that used the WASHINGTON POST to get Craig's List to shut down their Adult Section. They used an AD in the Washington Post to get attention and it worked. Not only did Congress get involved, but 17 State's Attorney Generals also wrote an open letter to the Craig's list CEO.

    What will our AD Campaign do? What sort of attention will our AD bring us? I strongly suspect that when the public sees that a possibly deadly virus has been out in the public and nation's blood supply for 30 years and that damage to all research on Retroviruses was halted in the early 1990's, there will be screaming across Washington and the Nation so loud that the CDC and others involved will be investigated and one of the most massive scandals/cover-ups in the history of the US will be out there in the open.

    So, if you want clinical trials, medications, research, funding, trained doctors, people to finally understand that you are indeed very sick - JOIN AND DONATE NOW.

    See the story and how the Washington Post AD opened up this prostitution issue and brought in huge amounts of senior attention and action.

    ME/CFS Worldwide Patient Alliance - This is the new name for the campaign. It was voted on by members - over 900 people strong. Website is coming soon with more info and it will reach thousands if not millions of CFS/ME/FM and Gulf War sick and the public.

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

  16. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Yes, it did work.

    News media influences politicians. Politicians can influence others.

    I understand the worry about trying to get all we patients want to say in one ad and have it be effective.

    I ask that you put a little trust in us. I have designed a mock up. It is strong. It goes to one main issue, the big one. It is hard-hitting. And it has a strong photo. Four people have looked at it, and like it. It is not refined, but all four like the direction. I will not be the only one with proposals though. And patients will vote on their preference.

    I can't show it to you yet. But, if you could see it, I think your concerns would be lessened.

    The point I think about this campaign is this:

    #1, Patients and the public have been left out of the CFS debate and discussion. That's not right. And this will change that.

    #2, This approach has not been tried or it hasn't been tried in last 10 years. Weak begging with letters and statements to CFSAC have been ignored. Time to up the volume.

    #3, The MLV studies give us solid ground to make our points, so now is the best time to demand change.

    I hope you guys support this.


  17. puggles

    puggles New Member

    Tina is spot on. NOW is the time to hit the public with the info on the new Retrovirus family and all of its probable deadly implications.

    Are you guys aware that viruses do indeed cause many different types of cancers?
    Are you aware that CFIDS sick have the highest rates of "rare" lymphomas and leukemias?
    Would a family of Retroviruses be a possible mechanism for causing those unusually high "rare" cancers seen in the CFIDS sick? Many researchers believe that this is indeed a very strong possibility and one that needs a great deal more research.

    Hit the Causes link. Join, participate, donate. Help get the messages out to the public and policy makers that must be gotten out or the CDC and other organizations who do not want this information out will do everything to keep damaging, demeaning, and downplaying the critical nature of our disease, the research needed to find us a cure, and further research on the family of Retroviruses that affects not just US, but every single person in the world.