Sorry for being so silent lately. It was another insanely busy week here, with all the usual culprits (school, soccer, medical appointments, etc), plus my husband was out of town all week, so I was getting the kids to all their commitments on my own. Also, my mom was visiting, and she and I hosted our book group (a wonderful, kind neighbor actually held it at her house for us; we just provided refreshments and book choices). Anyway, it's just been very hectic.
But today I read such amazing, exciting news that I had to try to find time to share it with you!
A brand-new non-profit organization has been started specifically to fund and conduct ME/CFS research! The Chronic Fatigue Initiative (I know, the name is a bit cringe-worthy, but read on), headquartered in NYC and privately funded, has initial plans for $10 million in ME/CFS research between now and 2014. No, that was not a typo - $10 million!
Take a look at their website at the above link to read more details about their plans. I was skeptical at first (it sounds too good to be true!), but their list of well-known CFS researchers participating convinced me.
The Wall Street Journal (and our good friend there, Amy Dockser Marcus) published a blog post yesterday with details about the new initiative.
Exciting news, isn't it? So, raise a glass of grape juice tonight to celebrate the new opportunities and discoveries to come!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
This does sound hopeful. I've been trying to "get into" some research. Especially something infectious or immune related. I signed up for the Biobank but all I've done is fill in a form. I hope this initiative translates to treatment quickly. Money talks.
ReplyDeleteI know, right? I found this, too, and posted it to my blog. It is so exciting. What I love is that Ian Lipkin has a role in this. It sounds like he has been really touched by his associations with people with CFS through his XMRV research. So, whether XMRV pans out or not, at least it has led to this incredible effort to finally get to the heart of the matter.
ReplyDeleteIt all helps, there's no denying it. I liked the end of K.Kimberley McLeary's article about the XRMV factor where she stated "there is no longer dispute about whether CFS is worthy of scientific endeavor; that, in itself, is progress." Just feels so like we're on the verge of cracking this puzzle...but I guess you've been feeling like that for years. Hope the sun is shining on you today. We've just had the warmest day since May in our upside place! So welcome. {My husband is about to leave Delaware (he works for DuPont) - part of a whirlwind business trip. I think that means he's been somewhere near you. The world is a small place sometimes! Hope he brought some nice Australian weather} : )
ReplyDeleteBTW did you get my reply to your comment around 12th Sept because it and other comments have just been spammed back from your blog? Hopefully I haven't offended you with my investigation of GET.... I'm so traumatised by the whole debate & worrying whether we're doing the right thing that I'm thinking that might be possible! Hopefully not!
ReplyDeleteThat is such great news! 10 mil wow!!!
ReplyDeleteHi, Annie -
ReplyDeleteNo worries - you could never offend me, especially by trying treatments for your daughter! Everyone is different and you have to see what works, right? You and she are the best ones to determine whether the degree of exercise she is trying makes her crash or is helping. I'm not exactly sure which comment you're referring to that was spammed??
WHAT?? Your husband works for DuPont? So does mine - and I used to, too!! That's how we met. And Delaware is a VERY small state, so I'm sure he was quite close to us this week. Let me know next time he comes to town, and maybe we can get together for dinner or something.
Sue
This really is good... no, GREAT news, Sue! Also, how cool that you have a friend that works at the Wall Street Journal! :->
ReplyDeleteJudy
Hi, Judy!
ReplyDeleteActually, when I said "our good friend", I meant a friend to all of us with ME/CFS - sorry that wasn't clear. Amy Dockser Marcus has written dozens of WSJ blogs and several in-print articles on ME/CFS - she truly is a friend to all of us!
She interviewed me over the phone for another article, but I've never met her in person.
All of this publicity helps!!
Sue
Hi again Sue. Thanks so much for your fabulous lengthy replies, I'm particularly grateful as I know how careful you need to be with your energy. Thought I'd reply here to make it easier for you to see. I did wonder if there might be a DuPont connection since Delaware is such a small state..but you don't need to catch up with him though thanks! You have quite enough on your plate!
ReplyDeleteAs for the spam issue I will investigate further to see if it's my issue (probably!) or yours but I suspect my reply never made it to your inbox....
Yes I can see what you are saying about OI and I have read your blog in some detail so know how great the medications have been for your boys. I am getting a lot of stonewalling from the medical profession here so may need to grit my teeth and go into battle (tactfully!)...not something that comes naturally to me but since my daughter's health is concerned.....
Just read the news today about the 'gamers' at University of Washington working out the structure of a 'monomeric protease enzyme, a cutting agent in the complex molecular tailoring of retroviruses'. Let's hope that's good news for us too!
Read more: http://www.theage.com.au/digital-life/games/online-gamers-crack-aids-enzyme-puzzle-20110919-1kgq2.html#ixzz1YNFx2hai