Wednesday, May 4, 2011

HELP !!!!!!

12th May is International Awareness day for ME/CFS.

I have been severely ill with Chronic Fatigue Syndrome since October 2009 and to be blunt about it, I HAVE HAD ABOUT ALL I CAN TAKE !!!!!! There are an estimated 17 million people worldwide suffering with this illness, some are still able to continue with life to a lesser degree and others like me are totally housebound or even totally bedridden. I have lost my job, my friends, any remnants of a social life, my independence, self respect and I will even have to move house shortly. Astonishing as it sounds I am one of the lucky ones because I have a government who will allow me disability support and I have only been ill a short time, others I know have been suffering for 30 years or more. This suffering needs to stop and thankfully progress is finally being made by a private research facility in Reno Nevada. The Whittemore Peterson Institute have made real breakthroughs in the science behind the illness but being a private lab they need community support to continue their research. My life and 17 millions other lives are relying on their continued efforts. We cannot wait forever, our life expectancy is 25 years less than an average healthy persons. For the month of May we are all banding together in an attempt to raise more money for the WPI. I know many of you are struggling financially yourselves and if this is the case for you then please don’t feel obligated to reach into your pocket, however, if you are in a position to spare a few $$$ then there are two ways you can help me and others like me.

Firstly you can purchase a gift card or print from the ‘Art 4 XMRV’ project I have set up. All of the artwork has been created by talented people who are suffering with ME/CFS and 100% of the profits will be forwarded onto the Whittemore Peterson Institute. If this interests you then please visit the shop here -

If you aren’t really interested in making a purchase but you’d still like to help you can make a donation directly to the WPI by going to their website here - (please mention in the comments box that you came via 'Art 4 XMRV' so they know how you found them)

A few $$$ really can make a difference, please don’t be complacent, if you are in a position to help then PLEASE step up to the plate and do so. Any donation will be GREATLY appreciated !!

Thanks for reading :-)

Lee Lee


  1. got to order more cards and blog too...on list but thanks for the prod. XXOO

  2. Even if you are broke you can help, on facebook. Chase Community Giving second round runs 19th-26th May. The WPI have a real chance of a top prize - up to $500,000!

    If you don't want to compromise your facebook information by allowing Chase in to your facebook account, make another one with a new email! Here's how to do it.

    1) Create a new free email account to use with facebook so there is no chance of compromising your existing email account. There are loads of suppliers, hotmail yahoo and gmail are the biggest.

    2) Create a Facebook page. You need a first name and a last name, but it does not have to be your real first and last name. If Facebook requires info you don't want to give, just make up a fictional answer. Just make sure you give a working email address, because they will verify that.

    Then all you need to do is go on facebook and,
    1. Like Chase Community Giving here
    2. Search via the Chase search engine for the Whittemore Peterson Institute.

    If you are on a mac, Safari hates facebook apps but Firefox works, if you enable third party cookies. Facebook apps is all I use Firefox for.

    Please diary this, and share with all your friends once the contest restarts on the 19th. We are up against wolves, drummer boys, and community arts. The WPI is the worthiest cause in the Competition!

  3. Sarah-Louise JordanMay 4, 2011 at 7:39 AM

    If only there was some way to really grab the world's attention about the plight of people with M.E/CFS. Your blog is brilliant, and hopefully it will help more people become aware.I have M.E too and its appalling.Hope this year turns out to be far better for you than you can even imagine, love Sarah-Louise

  4. Add two kids, also sick with ME, subtract the art, make it moving 3 times since getting sick, and this could have been a blog post by me. Thanks for sharing ways to help, both Lee Lee and commentors.

  5. You've lost your self-respect, Lee?!?? Do you not realise the amount of comfort and guidance you bring to countless ME sufferers? And the way you fight for all of us despite your own immense restrictions has given me the deepest respect for you. "ART 4 XMRV" was an innovative idea and it now provides me with all my cards and I'm trying to publicise the site as much as I can.

    I'm so sorry to hear that you feel close to the edge of your endurance. I hope knowing the relief you bring to so many (your warm, gutsy blog entries have truly changed the way I manage this hellish illnes; have given me more courage) will bring you some relief, Lee.

    Moving house is a terrible strain for ME people. I crashed badly the last time I had to move. Please pace yourself - I hope you have people who can help, and I hope your new home is a beautiful space. Warm Regards.

  6. Boy do we need Elton John! How about we all tweet "ELTON JOHN WE NEED YOU" with a link to Here ... And Post the Status Elton John Please Help Us - We Need YOU" on our Facebook Pages with the Link to Here?
    Love Lesley = )

  7. ELTON JOHN TWITTER @ejaflondon This is the Best Link out there X Lesley

  8. I once emailed Elton's Aids Foundation about getting involved with those of us with CFS. Unfortunately, I received no response. But it's great to see this approach.

    LEE LEE hang in there!