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$'s for WPI - Count Me In!

Discussion in 'Action Alerts and Advocacy' started by jace, Jan 21, 2011.

  1. jace

    jace Off the fence

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    The one thing we can all do is to add our weight to a facebook campaign which you can find here http://www.facebook.com/event.php?eid=104227606318513 if you do facebook. If you don't, well just join in by using the links here. Pledge to donate a small affordable amount every month, on the 20th of each month, to commemorate the failed attempt to bury XMRV research. Start today, and follow through every 20th of the month. Together we can make the difference!


    COUNT ME IN

    A global event from your own home to WPI

    20th of every month

    Event creators: Maxine Middleton, Vikki Walker, Paul Kayes, Jo Best.

    Last month, on 20th December, 4 papers were published in Retrovirology, with a 5th that was a commentary on the other 4, claiming that findings of the retrovirus XMRV were due to contamination by mouse DNA.

    The original studies had been in patients with prostate cancer and also Myalgic Encephalomyeltis (also called Chronic Fatigue Syndrome in some countries hence our use of ME/CFS here) and were published after extensive peer-review in the prestigious journal Science in October 2009.

    The studies published last month related only to PCR testing scientists finding XMRV and MLVs had previously warned of the limitations of using only PCR to find XMRV and were already well aware of these risks in research, ensuring that their own results were not affected by contamination.

    Greg Towers of The Wellcome Trust Sanger Institute stated that XMRV does not cause ME/CFS, a claim that cannot be supported by these contamination papers. It was then widely publicised that these papers cast doubt over previous research.

    Many of us fear this could have an adverse effect on funds for further biomedical research for ME/CFS and other neuro-immune diseases, and could prevent other scientists from getting involved in this important research, which is of particular interest to patients with ME/CFS, but is also relevant to those with other conditions such as Fibromyalgia, Atypical MS, Autism, Gulf War Syndrome and also some cancers.

    The Whittemore Peterson Institute is a non-profit organisation that was set up because the founders' daughter Andrea Whittemore, has Myalgic Encephalomyelitis. Their mission is to find a cure for neuro-immune disease and they are leading the way in this cutting edge research.

    WPI President, Annette Whittemore, issued the statement here on 4th January 2011 in response to these contamination papers: http://www.wpinstitute.org/news/docs/WPI_XMRV_010111.pdf

    A retroviral link with ME/CFS was first discovered by Elaine deFreitas 20 years ago but did not gain funding and was dismissed. WPI has itself has been turned down 6 times for research grants from public funds. Many patients are now determined that this will be not be allowed to happen again. We have been left to remain far too sick for far too long and, tragically, many have not lived to see the dawn of this new and exciting avenue of biomedical research.

    Patients have had enough of certain researchers and practitioners appearing intent on either ignoring or disputing all research that does not accord with their false belief that ME/CFS is not an organic disease.
    ME sufferer Maxine had the idea of using the 20th of each month to donate to the Whittemore Peterson Institute to show our trust and support for the integrity and quality of their ground-breaking scientific research.

    We realise that this research may conclude that our disease is not caused by a retrovirus - but until then it is a very plausible explanation for the chronic, on-going nature of the illness and its numerous and varied symptoms, and is not incompatible with other viral involvement in the disease. ME has always been known to be post-infective, hence its alternative name at the World Health Organisation International Classification of Diseases -10 G.93.3 - of Post-Viral Fatigue Syndrome (for UK, CFS is annexed to this).

    It simply makes sense to us that this vital research continues until definitive answers are found.

    Many of us each donating a little each month will add up to a lot and will show how many of us support the work of WPI by helping them to help us.

    We believe that this fund-raising campaign will send a powerful message to our governments that we demand high quality biomedical research aimed at confirming - rather than denying - the biological cause of our disease, and will also encourage researchers around the world to go forward with this vital and long-overdue biomedical research.

    If you think this campaign is a good idea and would you like to show your support for The Whittemore Peterson Institute for Neuro-Immune Diseases in their mission to find the true cause and a cure for neuro-immune disease then click YES on this event page to say, COUNT ME IN.

    We are liaising with the WPI for the easiest ways for those of us who wish to make a small monthly donation via credit or debit cards,or PayPal, and we will let you know as soon as the accounting system has been set up and is ready to roll all donations will be paid directly to the WPI.

    If you feel strongly that you want to start donating straight away, then you can donate via the WPI website or the Cure for ME Causes on Facebook: if using PayPal, put COUNT ME IN under "special instructions".

    http://www.wpinstitute.org/help/help_donation.html
    (no minimum amount)

    http://www.causes.com/causes/399439-cure-4-me?m=97969829
    (causes has a $10 minimum amount)

    With thanks to Angelina and Kelleen at WPI for their help and advice.

    Let's take this initiative across the whole world wide web!
  2. jace

    jace Off the fence

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    Bump. Come on people!
  3. richvank

    richvank Senior Member

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    Hi, jace.

    I made a contribution to WPI.

    I just want to say that I think this is a very good idea. I think that the situation in autism is very instructive. Not much progress was made in autism until the parents of autistic kids organized, started contributing money for research, put together a group of physicians, and held conferences to discuss research results and treatment. The late Bernie Rimland was the original organizer of this effort. There is still a long way to go in autism, but it has become a political force, and the ME/CFS community has also benefited from this effort, because of the similarities in the biochemistry between autism and ME.CFS. The methylation treatment we are using now came from the autism work that was supported by the autism parents.

    I realize that this is more difficult to do in ME/CFS, because in autism there is often one parent working and the other parent caring for an autistic child, both of them more or less healthy, so that they have more resources in terms of finances and energy. Nevertheless, I think this effort is a very good thing to do, and in addition to the financial support, it must be inspiring to the people at the WPI to have such grassroots support.

    Best regards,

    Rich
  4. beesknees

    beesknees Senior Member

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    Done. My netflix subscription can wait. I want to support the WPI!!
  5. maryb

    maryb iherb code TAK122

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    It would be nice to know what we raised this month and then aim for more next month.
  6. jace

    jace Off the fence

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    COUNT ME IN - Donations to WPI 20th of each month

    Last month we raised over $600 and numbers have increased over the last few days to 243 people

    WPI Research into Neuro-Immune disease need our support and we believe they offer our greatest source of hope.

    Please consider attending this event and donating a dollar a month or more.

    Instructions can be found here...

    http://www.facebook.com/event.php?eid=104227606318513

    Many thanks for taking the time to read this, I do hope you will join us.

    Via Jace, from Paul on behalf of the Count ME IN team.

    Please repost and invite family and friends.

    For those that don't do facebook, you can be with us in spirit. Just send a small amount, using paypal, credit cards or even sending a cheque, on the 20th with this link http://wpinstitute.org/help/help_donation.html
  7. markmc20001

    markmc20001 Guest

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    I've donated twice to the WPI. I wish they wouldn't spend the money and time on the fancy thank you cards. But will start to make my next donation on the 20th in spirit of working together for bettering everybody's health.

    Good idea, it all helps.
  8. caledonia

    caledonia

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    Jace, I'm also working on a campaign for small monthly donations to the WPI. Except mine emphasizes setting up automatic donations through the Causes page.

    I also like the idea of doing it manually on the 20th of the month, as long as you intend on promoting it every month around the 20th. There's nothing like repetition and everybody doing it at the same time, giving it a sense of community.

    What I'm wondering is, would it make sense to combine our campaigns? I'm planning on contacting patient orgs, blogs, forums, advocates, etc. worldwide to join in.

    You can see my campaign in my signature line below.
  9. jace

    jace Off the fence

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    Great that you are working on it too. I'm in the UK, and that page won't fully load for me. The same thing happens on other Causes pages that I've tried to access over time on my computer. It loads, then clears, then loads, and clears, and I never could actually use it. No idea why, but it may be because of where I am.

    We are waiting for a specific donation site for CMI - should be up next month. Meanwhile, I'm bumping this as we approach the 20th of each month.

    http://www.facebook.com/event.php?eid=104227606318513
    Every little bit helps, folks. If everyone with a neuro-immune disease got involved, there'd be millions a month for the WPI's work.
  10. caledonia

    caledonia

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    Jace, I found out there is a minimum of a $10 donation for the automatic monthly donations on Facebook Causes. Which totally defeats the purpose of my campaign. Therefore I am stopping my campaign and joining yours.

    What is CMI? If this is going to be set up as soon as next month, I'm going to wait to start worldwide promotion. The main thing is that I want to make it very simple, easy, and affordable, and not confuse people. Then just pound in the same simple message over and over until it sticks - lol.
  11. caledonia

    caledonia

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    Just figured out CMI means Count Me In. I hope you're making the url very easy to remember.

    In general, so far your promotion has been very complicated, ie long blocks of text, which is not going to be very effective.

    I suggest keeping it as simple and non-complicated as possible.

    For an extreme example, a good billboard has about 5 words. Tweets have 140 characters.
  12. jace

    jace Off the fence

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    This is early days for Count Me In. We are looking at a dedicated website, and the WPI are trying to get us a special CMI donation site to link to.

    Membership has grown 50% since last month, so far. You can donate here, direct to the WPI
    and you can join Count Me In here

    Imagine if we grew at that rate, for the next 12 months, how many would there be by early 2012? Any mathematicians around? And it's not even the 20th yet, we've got until tomorrow to improve the February statistics!
  13. jace

    jace Off the fence

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    Today's the day! And so far (to pm last night) $500 has been donated with Count Me In on the message with the donation, so we must be able to more than double last month's figures. Double each month? That reminds me of the Chinese proverb where the sage asked for one grain of rice for the first square of the chessboard, two for the second, four for the third, eight for the fourth, doubling the amount for each square. By the time he got to the 64th square, there was more rice than in the whole of China!

    Caledonia, with CMI you can use the Causes page http://tinyurl.com/6b6cjw2 (Cure for ME Causes page)
    which as you say has a minimum of $10, or you can go direct to the WPI and donate as little or as much as you like, but there is no repeat donation facility. http://tinyurl.com/5wjrgyk (WPI donation site) Remember to say Count Me In in your message to recipient! I forgot last month!

    Tweeters! Can you tweet today with this URL http://tinyurl.com/5rerwey to the Count Me In Facebook site?
  14. camas

    camas Senior Member

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    It's nice to have the monthly "Count Me In" reminder on Facebook. I just chipped in my February donation. The one thing we've always had going for us is numbers. If every person with ME/CFS would just donate a little every month to the WPI we could really make a difference.
  15. jace

    jace Off the fence

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    We'll be reminding people every month. This is a game changer. Everyone counts. Not only every dollar but every donor. Those of us who can only give a little are still helping to swell the ranks of WPI supporters.

    So, when they go for a Foundation Grant, and the Foundation says, "can you show that you have support in the community?" WPI can say "Yes! Look at all these people who give to us every month, even if all they can afford to give is 1 or $1."

    Don't worry about joining in a day or two either side of the 20th - let's face it, as a world wide initiative, the 20th is 47 hours and 59 minutes long!

    By Tuesday or Wednesday, we'll have this month's totals to report.
  16. jace

    jace Off the fence

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    $'s for WPI - CMI February results.

    The results of February's Count Me In campaign are - Wahay! - better than double. Much better. All the rice in China is not that far away!

    CMI donations so far counted (may be a bit more - we'll know in March) - $2504 / 1541 / € 1823

    (and I know of a few people who forgot to put a CMI message on their contribution)

    Message from the CMI team:

    See you all around the 20th March xxx

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