Thursday, February 23, 2012

Groundbreaking New Research Model for ME/CFS

I've been really exhausted all week but also really busy, so today I am feeling pretty badly crashed...and both of my kids are home sick, too.  So, I don't have the time or energy for much blog writing today, but I wanted to share this great new announcement from the CFIDS Association of America (CAA).

They are starting a brand-new research initiative called "research institute without walls."  Basically, they are coordinating (and funding) ME/CFS research from top scientists and doctors, located at top research facilities, and making use of the CAA's Solve CFS BioBank.  The program is focused on finding effective treatment options for those with ME/CFS, a refreshingly practical and unusual approach in this field!  Each of the projects will delve into its own aspect of CFS (cognitive dysfunction, OI, exercise intolerance, etc.), but the researchers will also work together, coordinated by CAA's Scientific Director, Suzanne Vernon, and share information.  You can read all about the new approach and the individual studies approved so far at Reserach1st.

I think this is wonderful news for all of us patients!  The Wall Street Journal even covered this breakthrough on their Health Blog this morning.  Apparently, in addition to the usual sources of research funding (we contributed to this project!), Laura Hillendbrand is donating $250,000, bringing the total funding to $2 million.  How about that for some good news for a change?

P.S. Want to help?  Read about the Catalyst Fund which is helping to fund this research and contribute, if you are able to.  You can also help move this research along by participating in the SolveCFS BioBank.  I have applications for Jamie and I sitting here...I really need to find the time to get to these...


Jennie Spotila said...

Hi Sue,

I posted a writeup on the overall program on my blog here:

And a writeup of the grants here:

I tried to summarize all the news but not overwhelm with technical details . . .

Anonymous said...

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?

Sue Jackson said...

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.


Renee said...

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.

Sue Jackson said...

Judy -

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).

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.

Besides, who has the energy for all that infighting and anger and negative emotions? I prefer to make a difference through positive action.

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.

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.


Sue Jackson said...

Thanks, Renee.

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.

Hopefully, we will all perk up a bit tomorrow - thank you for the prayers!

X said...

It's exciting isn't it! Thanks for posting this.

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.

Now..where did that biobank form go...I wonder :)

upnorth said...

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.

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.

Annie said...

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.

Anonymous said...

Hmmm, alrighty then!

FYI, my Blog is going to be unavailable for a while, but I'm OK...


hkd said...

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

Sue Jackson said...

Hi again, Heather!

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.

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!


Unknown said...

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 ( I encourage anyone who is able to do so to support this organization on Giving Tuesday. Thank you, Sue, for getting the word out!