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Friday 21 January 2011

ME and me

Hey I'm Jack I am 52 years old and I have suffered from the debilitating disease ME since I was 28. ME has taken the best years of my life, I don't want to sit back and see this happening to others, this "thing" has destroyed my life, and I can honestly say I am now alone....but for my wonderful friends in a wonderful group on Face Book...we are more than a group we are a family....We are all in the same/similar position you see....so we can understand what others do no...THAT IS ME/CFS IS REAL...we know we live it....I don't understand about Blogging or much else but we are all doing what we can to get help...I will now add some links that say a lot more than I am capable of...if only one person reads this it would have been worthwhile.


http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.wpinstitute.org%2Fxmrv%2Fdocs%2Fwpi_pressrel_100809.pdf&h=be2c7

http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.sciencemag.org%2Fcontent%2F326%2F5952%2F585.abstract%3Fkeytype%3Dref%26siteid%3Dsci%26ijkey%3Dm3wzKT4yJqEyk&h=be2c7


Thank you to everyone who has read and commented on my Blog.....a typical day for me today...couldn't get up until around 5 pm......and that was a struggle...had breakfast....no matter what time of day I get up I still have to have breakfast...I'm into sugar puffs at the moment....but before I fed me I fed my lovely understanding....puppy and cat...it's marvelous how they adapt...I think they are more understanding than a lot of humans I know....This next link is a very important one...anyone who could donate however little to the  WPI would be fantastic...these are the only people who are doing any real research into the link with ME/CFS and XMRV....they do it with no funding ..just donations....they are a wonderful family.....

http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.wpinstitute.org%2Fhelp%2Fhelp_donation.html&h=be2c7


If anyone has read this far...here are some Questions and answers from the WPI....I hope you find them interesting and helpfull.

http://www.google.co.uk/url?sa=t&source=web&cd=3&ved=0CCsQFjAC&url=http%3A%2F%2Fwww.wpinstitute.org%2Fxmrv%2Fxmrv_qa.html&ei=Tt05TZUNwYaFB4H7hOAK&usg=AFQjCNFF95MGhvX0iz9BZnEXeFoIVrB68Q&sig2=Eymo7iAe1rYxVrL4pr6L7w

Thankyou to everyone who read and commented on my blog....I am so chuffed...it's been a long day....it's 00.44 now and I'm done in....had loads of fun with my brilliant FB Family....as usual...I won't give you anything to read now as it's late....but be ready later.....thankyou again....lets get this message out there.

14 comments:

  1. Thanks for posting about this important issue, Jack. I hope you continue blogging.

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  2. I really feel for you - to have had this illness for so long is just outrageous. Makes me even more aware just how lucky I've been to have had the chance to "live" my life before I got ill.
    Take care. xxxx

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  3. Thanks so much for writing this post, Jack. I truly believe that many lives will be saved through XMRV research. I can't emphasise how imperative it is that the work should continue. 17 million people worldwide depend on it.

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  4. I agree XMRV research is of vital importance to millions of people and will save many lives. Thanks for sharing this information.

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  5. Thanks Jack for writing about this very important issue. It is very sad to hear about how these illnesses affect you and others. We are advocating and spreading the word daily- in North Carolina- that more needs to be done to educate on these serious illnesses.

    Lisa Baldwin,BSW
    www.bringingryanhome.com

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  6. XMRV research has to be allowed to continue - My story is almost identicle

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  7. Hi Jack, thank you for this great intro to your new blog, which I really look forward to following. May I alert your readers to a new fundraising campaign that was launched yesterday by patients like ourselves who believe that the Whittemore Peterson Institute for Neuro-Immune Diseases, that you gave links to in your blog, is our best hope for proper treatment and hopefully a cure, for diseases such as ME (CFS) which affects children as young as 2 years of age and is the biggest cause of long-term absence from school in UK - I am sure most people and the public are not aware of how serious and widespread this disease is. Here is the link to the fundraiser. The idea is that a litlle from a lot of us around the world will go a long way to help WPI to help us! Thanks again Jack and well done!

    http://www.facebook.com/events/create.php?eid=184091031613668#!/event.php?eid=104227606318513&index=1

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  8. Every time those links get out there, it's a chance that one more person will get educated and get involved. Thanks!

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  9. Thank you for sharing with us Jack. I agree if it reaches one person then you have made a big difference :D Love C>x

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  10. I think a personal story is the greatest presentation of what this disease does to people's lives. Thank you for making it real and relevant!.

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  11. Thanks so much for shareing your blog with us, an helping people understand the difficulties of ME, an the hope we have with WPI working to find a treatment, maybe XMRV will be the key, thank you chris xxx

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  12. What a great blog, Jack. Thanks so much for sharing about yourself. (now you've got me wanting sugar puffs....gotta go find some!)

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  13. So so proud of u for sharing ur story jack! Always lovely to read others personal experiences. U go girl! Xxx

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  14. Wellcome to the blogosphere world and a more worthy subject to blog about would be difficult to find.

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