tag:blogger.com,1999:blog-4859172432087444516.post6760635523645421078..comments2023-05-16T22:25:16.105-04:00Comments on One Agent for Change: 2010 - The Beginning of the Quality of Life Decade for NEI PatientsAnonymoushttp://www.blogger.com/profile/13516158344764599073noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-4859172432087444516.post-30815654383796337652010-01-10T13:45:55.461-05:002010-01-10T13:45:55.461-05:00The video I mentioned was from:
Luminescentfeelin...The video I mentioned was from:<br /><br />Luminescentfeelings<br /><br />still can't find the exact youtube link though sorry. possibly here:<br /><br />http://www.youtube.com/user/luminescentfeeling?feature=chclkKate Weatherfordhttps://www.blogger.com/profile/02684275471391065913noreply@blogger.comtag:blogger.com,1999:blog-4859172432087444516.post-85737150827854153202010-01-10T13:00:45.383-05:002010-01-10T13:00:45.383-05:00Thank you so very much Marly.
When connecting wit...Thank you so very much Marly.<br /><br />When connecting with the WPI facebook forums after their XMRV discovery, I was made aware of a youtube CFS feature (Which I am failing now at finding of course). There was a quote in it that struck me to the core. It literally sent a shock-wave through my heart. It summed up in a few words how I felt from the years of doctor neglect, demeaning strangers and some 'friends', and the so very mis-informed public at large. I am not sure I will be quoting completely accurately, but this is what I heard:<br /><br />"You failed; now please just die."<br /><br />Let me say that during the space every day that I can connect with the wonderful advocacy groups in facebook, fellow PWC's and their blogs, and the WPI facebook, the statement above pales, shrinks and has no power. If nothing else, the XMRV discovery brought me back into the arms of those who care. May we All regain our personal power through support and love, in this year of 2010 and beyond.<br /><br />~ katieannKate Weatherfordhttps://www.blogger.com/profile/02684275471391065913noreply@blogger.comtag:blogger.com,1999:blog-4859172432087444516.post-15915750903592118412010-01-09T13:27:53.774-05:002010-01-09T13:27:53.774-05:00Marly, thank ou so muhc for sharing this blogpast ...Marly, thank ou so muhc for sharing this blogpast with us. "Failure to thrive" is certainly a very adequate term to explain a very serious situation for patients wtih ME/CFS. <br /><br />Broken soul. Shattered hope. Failure to thrive. How long can a human being live in a failure to thrive conditions, wihtout validation, respect and support? My thoughts goes to Jack's family, and also this woman who left us before Christmas, because she also had a broken soul. <br /><br />May 2010 be a turning point for all of us, may we be heard, understood, respected and HEALTHY.Katinoreply@blogger.com