1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Major Public Media Campaign Launched - This WILL Get the Attention of MILLIONS!

Discussion in 'Action Alerts and Advocacy' started by muffin, Aug 12, 2010.

  1. urbantravels

    urbantravels disjecta membra

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    CFS is like a big cosmic game of whack-a-mole. Only we're the moles.
     
  2. Cloud

    Cloud Guest

    That's the name of that game!! I have used that game as an example for many of our experiences, but could only describe it. Many things we deal with are indeed just like that game. The amazing thing is that we just keep popping right back up. Not everyone can do that, especially thousands of times.
     
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Helen

    Helen, how flattered I am.

    tina
     
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I kinda like that game, literally, I think the rope should be longer though!
     
  5. caledonia

    caledonia

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    How are we doing on funding for the press release?
     
  6. muffin

    muffin Senior Member

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    USA!
    We have met our Angel donors matching $1,000 goal!

    Please note that we have hit the $1K mark that our Angle donor is matching.

    As Tina will update later, we have the money for our AD and we have money for Press Releases. HOWEVER, please do not stop donating IF you have the money.

    This is Round One of this major media campaign. There is going to be a great deal going on so that we can really take advantage of all the good info coming out on the retorvirus family and ME/CFS. So, we are striking hard while the iron is HOT. We have to otherwise the Federal government and other governments will find ways to "kill off" ME/CFS research and re-bury us back into our graves.

    Please keep hitting the website at http://www.mcwpa.org for updates as well as the Facebook Causes site at http://www.causes.com/causes/511536?m=f042604e

    We have 1,699 members since the start about four or so months ago. That really is remarkable for any cause. Many of those new members are coming in from other diseases (e.g. Autism, breast cancer, Gulf War Syndrome, and so on) given that they too are impacted by this new Retrovirus. So the word is spreading that the MCWPA IS making things happen and forcing change.

    Please stay tuned for the alerts on the AD that hits the Washington Post and the Press Release that will be sent to thousands of media outlets and journalists.

    All of the MCWPA members have worked insaneley hard to make this happen. So please, watch out for the AD and Press Release - and the EXPLOSIONS that will come because of them!

    Yes, we all will ensure that everyone knows about the AD/PR - but still pay attention!!!

    Great things are about to happen soon!
     
  7. urbantravels

    urbantravels disjecta membra

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    muffin, does the "charity ad" rate mean the ad might run on a weekend instead of a weekday?
     
  8. usedtobeperkytina

    usedtobeperkytina Senior Member

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    urban, it means they choose, but we can block out certain days of the week, which we did.

    HELP!

    Developing the website. Need something quick. Is there a place on the Internet that shows the most recent recommendations from the CFSAC concerning the network? I'm talking about the October meeting this year. PLEASE HELP

    It is not on the CFSAC website yet.

    Tina
     
  9. Carryon

    Carryon Mike Munoz

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  10. muffin

    muffin Senior Member

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    USA!
    Chronic Fatigue Syndrome Patients Run First-ever Ad in The Washington Post WE DID IT!

    Chronic Fatigue Syndrome Patients Run First-ever Ad in The Washington Post
    --Possible New HIV-like Retrovirus in Blood Supply--
    http://www.prnewswire.com/news-releases/chronic-fatigue-syndrome-patients-run-first-ever-ad-in-the-washington-post-111363234.html


    CORAL GABLES, Fla., Dec. 6, 2010 /PRNewswire-USNewswire/ -- In an unprecedented move, chronic fatigue syndrome (CFS) patients published a half-page ad in The Washington Post today. The ad brings attention to new, HIV-like retroviruses, including XMRV, which have been linked to CFS and aggressive prostate cancer, and have been detected in healthy blood donors. The ad was created through the ME/CFS Worldwide Patient Alliance (MCWPA), a grassroots patient collaboration formed in August 2010 with the support of P.A.N.D.O.R.A., Inc. From their beds and wheelchairs, patients spent decades watching researchers, scientists and physicians debate about the cause or nature of their illness. Now, they are adding their voice through a campaign that calls for biomedical research funding, fast-track treatment options and improved patient quality of life. CFS, also known as myalgic encephalomyelitis or ME/CFS, is a disabling, sometimes fatal NeuroEndocrineImmune disease that afflicts more than one million Americans and an estimated l7 million people worldwide.

    (Photo: http://photos.prnewswire.com/prnh/20101206/DC12334 )

    ME/CFS first gained national attention amidst the AIDS epidemic in the early 1980s. As early as 1991, a retroviral link to ME/CFS was discovered by Dr. Elaine DeFreitas of the Wistar Institute, but subsequent retroviral research was halted by the government. Although more than 4,000 peer-reviewed articles in medical journals have pointed to system-wide immune, neurological, endocrine, gastro-intestinal and cardiac abnormalities, a biologically-based diagnostic definition has eluded doctors. The result has been a catastrophic lack of care, ineffective (sometimes harmful) treatments and a shorter life span for those who are ill. The leading causes of death among patients are heart disease, cancer and suicide. The disease occurs in people of all ages, from children to seniors, and also has a higher incidence rate in families and has occurred in cluster outbreaks.

    "This can happen to anyone," said Sita G. Harrison, spokeswoman for the MCWPA. "ME/CFS is devastating and the lack of care has hurt us all. We ask the government and health care agencies that we put our trust in to help the millions of people who are suffering and to fund more research now."

    A major scientific breakthrough occurred in October 2009 when the Whittemore Peterson Institute (WPI) at the University of Nevada, Reno, working with the National Cancer Institute and Cleveland Clinic, published the results of a landmark study. The seminal study, published in the leading scientific journal, Science, discovered the third human retrovirus, XMRV, in the blood of 67% of ME/CFS patients and in 3.7% of healthy controls. This suggests that up to 10 million US citizens could already be infected. This finding was later confirmed by the FDA, NIH and Harvard Medical School in a study published in the Proceedings of the National Academy of Sciences. Their results linked a family of human gamma retroviruses (to which XMRV belongs) to ME/CFS at a rate of 86.5% and 6.8% in the healthy population, bringing the total of Americans who may be infected up to 20 million people.

    "The NIAID, the national institute responsible for infectious disease research, has yet to fund XMRV research in ME/CFS or any other disease," explains Annette Whittemore, President of WPI. "WPI has had its last six XMRV-related grant proposals turned down; despite the fact that our researchers have proven XMRV is transmissible and infectious."

    MCWPA is advocating for a budget that is in line with other NeuroEndocrineImmune diseases. Currently, only $5 million for ME/CFS research is in the NIH budget, far less than similar diseases such as multiple sclerosis ($l44 million) and lupus ($121 million). Patients also ask for antiretroviral and Ampligen clinical trials that have shown great promise in mitigating the effects of ME/CFS.

    For more information, to donate, or for more resources and spokespeople, including leading researchers, scientists, physicians, patients, and historians please visit http://mcwpa.org/ .

    About MCWPA: Our mission is to create an effective, cutting-edge advertising campaign addressing the poor quality of life of individuals with ME/CFS. By issuing a collective and unified statement, our community will no longer be silent and invisible. The MCWPA ad campaign is supported by P.A.N.D.O.R.A. Inc., Vermont CFIDS Association, Inc., R.E.S.C.I.N.D., Rocky Mountain CFS/ME and FM Association and the Wisconsin ME/CFS Association, Inc.

    CONTACT:
    Sita Harrison/Tina Tidmore
    561-313-1835
    205-680-6890
    Media@mcwpa.org

    SOURCE MCWPA
    http://www.prnewswire.com/news-rele...ever-ad-in-the-washington-post-111363234.html
    PRNewswire-USNewswire Chronic Fatigue Syndrome Patients Run First-ever Ad in The Washington Post - December 6, 2010 - Section A-12


    http://mecfsposts.blogspot.com/2010/12/washington-post-mcwpa-ad-6-december.html
     
  11. Enid

    Enid Senior Member

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    Right in the chops as Court has mentioned (and did I know 10 years ago - it's Viral) We are on the way now.
     
  12. leela

    leela Slow But Hopeful

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    Has there been much response yet, media- or otherwise?
     
  13. usedtobeperkytina

    usedtobeperkytina Senior Member

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  14. leela

    leela Slow But Hopeful

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    Wow!! So impressive! This is so amazing...
     
  15. leela

    leela Slow But Hopeful

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  16. citybug

    citybug Senior Member

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    Congratulations on a job well done!, and a very big complicated job. I can't figure out where you guys are celebrating. Are there media calls coming in to the volunteers? Is everyone working on their letters?
    We should probably click on some of those articles. It's worth reading that press release over. I especially like this part:

    "This can happen to anyone," said Sita G. Harrison, spokeswoman for the MCWPA. "ME/CFS is devastating and the lack of care has hurt us all. We ask the government and health care agencies that we put our trust in to help the millions of people who are suffering and to fund more research now."
     
  17. beesknees

    beesknees Senior Member

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    Anyway we can help spread the word on this? People we can send this to/write to.
     
  18. caledonia

    caledonia

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  19. usedtobeperkytina

    usedtobeperkytina Senior Member

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    yes, you can definitely help, here is how, starting Phase II now.

    We are now encouraging patients to help with Phase II of the ad campaign. Of course, it would be wonderful if patients could do all of these. Pick as many as you can do. Remember, every time just one more person sees the ad, you have accomplished something.

    1) Send letters to the editor. See my next post to see the suggested letter to the editor.

    2) Continue to follow the instructions in the Time for Action campaign to get the ad directly in front of Congressional staff. See this link: http://sites.google.com/site/timeforactionad/ We have been hearing they are getting these communications and a few are responding. Congress is still in session, so keep the pressure on until they go to recess. Make them remember ME.

    2) Post the ad on Facebook pages, Twitter, LinkedIn, blogs, and any articles. IMPORTANT- Do not place the ad or MCWPA logo on any products, such as mugs, or calendars, or anything that can or will be sold. Doing so would require a special license. Go here: http://mcwpa.org/change-needed-now/advertisements/

    3) Sign the petition for the network of centers, as the CFSAC has recommended. PANDORA needs your support to get Sebelius to agree to a meeting concerning establishing these centers, which has been a CFSAC recommendation for years (centers of excellence or network of collaborative clinicians/ researchers, whatever you want to call it). Sign here: http://www.change.org/petitions/view/letter_to_us_secretary_of_health_from_pandora Funding for these centers is one of the action points patients wanted.

    4) Donate to MCWPA for more ads. Go here: http://www.causes.com/causes/511536-me-cfs-worldwide-patient-alliance?m=829edc62 The dollar amount at the top is before the cost of the ad $8,500 and before the cost of the press release, over $2,000. So you see, the actual amount is low. We have more to do. If you don't use facebook other donation options are here: http://mcwpa.org/about-us/patient-discussion/

    4) We will soon announce Phase III of the MCWPA ad campaign with a flier and a copy of the ad to take to the public at restaurants, parking lots, government offices, etc.

    Tina
    MCWPA Team
     
  20. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Letter to the editor

    Here is the suggested MCWPA letter to the editor:

    Here is a suggested letter to the editor. If you are in another country, simple replace the paragraph about US research funding with something about your country.

    Some reminders:
    1) Keep it brief, or it won't be published or editor will take out what they decide. They want it about 200 words, this is 196 words.
    2) Also, letters to the editor are to be interesting, strong, and use clever wording, also needs to be a matter of broad public interest.
    3) Most newspapers have a place where you can send the letter in through their website. If not, call the newspaper and ask for an e-mail address for sending letters to the editor.
    4) Most require some personal information. Sign your name at the end.
    5) We have a spokesperson for MCWPA, but you can speak as a patient who supports MCWPA. Direct all news media inquiries to our spokesperson here: http://mcwpa.org/contact/
    6) If you pass this to other patients as an MCWPA suggested letter to the editor, do not change anything. Of course, everyone is free to write whatever they want to their local newspaper. But this is the MCWPA suggested letter to the editor.
    7) Would be great if this is done on Friday to hopefully get in Sunday's edition.

    Here it is:

    A new HIV-like virus in the blood supply has received little news media attention, despite the fact that this virus may be the cause of chronic fatigue syndrome (ME/CFS), a disabling NeuroEndocrineImmune disease that afflicts approximately 17 million men, women and children in the world.

    Why was this link between a retrovirus and ME/CFS missed by the CDC after they received reports of outbreaks 25 years ago? Why does ME/CFS receive only $5 million annually in NIH research grant funding when similar illnesses receive $12-$144 million?

    ME/CFS patients are going public, starting with the unprecedented advertisement in Dec. 6 issue of The Washington Post. The goal of the ME/CFS Worldwide Patient Alliance is to push for improving patient quality of life and alert the public to this discovery.

    Were too sick to stage large demonstrations on sidewalks. So from beds and wheelchairs, patients around the world donated money and typed on computers to remove the veil created from over two decades of neglect. We, including me, will be invisible no more.

    Fund ME/CFS biomedical research now.

    I invite you to see the real ME at mcwpa.org
     

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