tag:blogger.com,1999:blog-22576999.post4695547890879634602..comments2024-03-27T14:05:22.815-04:00Comments on Live With ME/CFS: Groundbreaking New Research Model for ME/CFSSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger13125tag:blogger.com,1999:blog-22576999.post-43395802546627258672014-12-02T16:26:32.217-05:002014-12-02T16:26:32.217-05:00I agree with Sue. I've had ME/CFS for 28 years...I agree with Sue. I've had ME/CFS for 28 years and Solve ME/CFS Initiative (formerly CAA) has been a lifeline of education, support and hope. I believe in their research agenda so much that I set up a crowdrise site and asked all of my friends and family to contribute (https://www.crowdrise.com/helpfindacureformecfs/fundraiser/tonilesowitz). I encourage anyone who is able to do so to support this organization on Giving Tuesday. Thank you, Sue, for getting the word out!Anonymoushttps://www.blogger.com/profile/14255273320090875325noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-78255398504214888532012-02-27T09:11:37.912-05:002012-02-27T09:11:37.912-05:00Hi again, Heather!
Yes, of course, it is fine for...Hi again, Heather!<br /><br />Yes, of course, it is fine for you to reference something from my blog, as long as you mention the source and link back (as you have done). Thank you so much for the shout out on your blog - I am really glad you have found my posts helpful to you.<br /><br />If you ever need to e-mail me, just click on my profile and use the e-mail button there. I get lots of e-mail from this blog, so I know it works!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-1921318396363785542012-02-26T17:53:17.092-05:002012-02-26T17:53:17.092-05:00hi sue - thank you for your very informative posts...hi sue - thank you for your very informative posts - i tried to email you but it was returned to me - i wanted to make sure it was okay that on my blog i cut and paste one of your posts - (which obviously has your web address etc..) and the links to your information regarding orthostatic intolerance - if you would like it removed please let me know - thank you <br />heatherhkdhttps://www.blogger.com/profile/03606859927429573387noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-15579079008387678332012-02-25T12:51:58.311-05:002012-02-25T12:51:58.311-05:00Hmmm, alrighty then!
FYI, my Blog is going to b...Hmmm, alrighty then!<br /><br /> FYI, my Blog is going to be unavailable for a while, but I'm OK...<br /><br /> JudyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-45093321981690588112012-02-24T16:23:24.204-05:002012-02-24T16:23:24.204-05:00Any step forward like this is an exciting one. I&#...Any step forward like this is an exciting one. I'm thinking we also need to do a little better at just spreading the word about treatments that are effective for some people so that general practitioners know what's available to try! Hope the boys are well enough to enjoy the weekend somewhat.Anniehttp://www.parentingcfs.comnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-70543811858857700462012-02-24T10:34:24.969-05:002012-02-24T10:34:24.969-05:00It is exciting news...and most the projects they h...It is exciting news...and most the projects they highlighted seem very worthy. Personally, I wish there was more money going to immune system stuff, but I guess I'm not in charge am I ?:) And I'm biased because I have a post-viral sudden incase with severe viral/immune issues.<br /><br />I even joined the Bio bank a year or two ago, although they haven't asked for any samples yet (perhaps because I don't fit the classic CFS/ME without the brain fog/cognitive issues)....I'd love to see something translate in my lifetime - for the next generation of sufferers if not for us.upnorthhttps://www.blogger.com/profile/04283010424792189579noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-32115741145976870722012-02-23T15:14:27.686-05:002012-02-23T15:14:27.686-05:00It's exciting isn't it! Thanks for posting...It's exciting isn't it! Thanks for posting this. <br /><br />Laura Hillenbrand's donation is great, hopefully it attracts some positive publicity as well as simply being a lot of money. I'm so impressed with the Research 1st site/CAA organisation and this latest news is fantastic.<br /><br />Now..where did that biobank form go...I wonder :)Xhttps://www.blogger.com/profile/07736967406360912646noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-39871758232839278202012-02-23T13:15:39.457-05:002012-02-23T13:15:39.457-05:00Thanks, Renee.
I definitely think it is the &qu...Thanks, Renee. <br /><br />I definitely think it is the "infection season." We can usually tell when a crash is triggered from exposure to a virus, and there've been a lot of those this winter, as there are every winter. Our doctor said the very mild winter we've had here makes it even worse - lots more viruses.<br /><br />Hopefully, we will all perk up a bit tomorrow - thank you for the prayers!Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-69060883187752892762012-02-23T13:00:07.647-05:002012-02-23T13:00:07.647-05:00Judy -
No way!! There is NO organization on ear...Judy - <br /><br />No way!! There is NO organization on earth that has done more for ME/CFS than the CFIDS Association of America. No matter what else happens - politics, scandals, etc. - the CAA has always been there for us patients, always putting their money into solid, scientific research, always standing up for our rights, even when they discovered the government was cheating us out of millions of dollars of research funding (a breakthrough that the CAA uncovered).<br /><br />As patients, we have so little power to begin with; splitting up and arguing among ourselves and choosing sides will only make us even more powerless.<br /><br />Besides, who has the energy for all that infighting and anger and negative emotions? I prefer to make a difference through positive action.<br /><br />The CAA was the first place I went for information after I was finally diagnosed - they have always been the best source of accurate and up-to-date information on research, treatments, and more. They've also funded some of the best research ever done in the ME/CFS field.<br /><br />I am proud to continue to support the CAA, and I am thrilled with this new approach they announced today - I have a feeling it will help ME/CFS research to progress at a faster rate than we've ever seen before.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-51525580028912366662012-02-23T12:59:49.781-05:002012-02-23T12:59:49.781-05:00Thanks Sue for the info here. Always appreciate be...Thanks Sue for the info here. Always appreciate being informed! Also, it stinks that the boys are sick still....I often wonder why this time of year there seems to be more relapses, crashes, etc. Maybe it is all the other bugs out there...maybe the house being closed up with stale air, etc...Anyway, keeping you in prayer.Reneehttps://www.blogger.com/profile/07089685282700680525noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-26312492812477973742012-02-23T12:49:46.597-05:002012-02-23T12:49:46.597-05:00Thanks, Jennie - I will go take a look at your sum...Thanks, Jennie - I will go take a look at your summary. I wasn't up to much summarizing myself today, so I appreciate you leaving the links here.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-77188982578879704802012-02-23T11:52:14.553-05:002012-02-23T11:52:14.553-05:00Hi Sue, so you didn't join the bandwagon with ...Hi Sue, so you didn't join the bandwagon with other CFS patients/organizations that are very unahppy and disillusioned with the CAA and are boycotting them?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-85527672362958624852012-02-23T11:33:15.096-05:002012-02-23T11:33:15.096-05:00Hi Sue,
I posted a writeup on the overall program...Hi Sue,<br /><br />I posted a writeup on the overall program on my blog here: http://www.occupycfs.com/2012/02/23/virtually-reality/<br /><br />And a writeup of the grants here: http://www.occupycfs.com/2012/02/23/diverse-and-coordinated/<br /><br />I tried to summarize all the news but not overwhelm with technical details . . .Jennie Spotilahttp://www.occupycfs.comnoreply@blogger.com