Mountain Bike Race to Fund ME/CFS Research

[Sushi]

Hi Everybody,

Some of my ME/CFS friends here in New Mexico have just successfully organized a Mountain Bike Race to fund ME/CFS research. These are patients who themselves used to avidly ride bikes and saw this as an opportunity for "healthy riders" to help fund research by participating a really good race. It drew riders from all over the world and raised $10,000 for ME/CFS research!

It is now an annual event called 24 Hours in the Enchanted? Forest: A Race to Solve CFS!. It not only raised funds but awareness! Something just as important. Suzanne Vernon attended and you will see her speaking on the video I am about to link.

This video is intended for the riders and other "healthies," so the speed of some of the frames might bother some of us who respond to visual stimulation. Just close your eyes for a minute--it is worth it to see what a handful of patients have done (and will do next year too) for research and awareness.

One of the first people you will see interviewed is Claudia Goodell, my neighbor here in Albuquerque. Ken Holmes, also from Albuquerque did the video using his own taping as well as footage from the head-cams of some of the riders. Ken says he had to trade his mountain bike in for a mobility scooter, but he and Claudia are "out-there" doing advocacy and having a lot of fun too.

Here is the video--please post it anywhere appropriate.

http://www.youtube.com/watch?v=ZDMr2ChSYWg

I am an avid ex-biker myself, so this one is close to my heart.

Sushi

 

[eric_s]

Hi Sushi

Thanks for sharing. Just for curiosity, who did the money go to?

Eric

 

[Esther12]

Thanks for that, and to all your friends involved too.

 

[caledonia]

Looks like a large well organized event. The money went to the Solve CFS Biobank aka CAA, which explains the presence of Suzanne Vernon.

She says they're close to some markers for diagnosis, and also treatment, whatever that means.

 

[Dreambirdie]

Looks like a large well organized event. The money went to the Solve CFS Biobank aka CAA, which explains the presence of Suzanne Vernon.

She says they're close to some markers for diagnosis, and also treatment, whatever that means.

The fact that the money is going to CAA is going to be an issue for many people, considering their horrible track record over the past few years, as in:

*being so horribly skeptical of XMRV findings, and non-supportive of the WPI,

*their unwillingness to address the MANY complaints from the CFS patients they were supposed to be advocating for (http://www.cfscentral.com/2011/02/bad-company-22222.html),

*their pathetic response regarding the ICD-10-CM plans to move CFS to R53: (as in Malaise and Fatigue). Unfortunately, we have neither the time nor expertise to engage on this issue. We have no clinicians on staff, and no expertise in making the case for how diagnostic codes will have a negative impact on reimbursement. The IACFS/ME or CFSAC might be in a better position with the right expertise. (Jenny Spotila of CAA) http://www.cfscentral.com/2011/02/island-of-lost-luggage-222222222.html

*repeated idiotic comments from Vernon and McCleary to reporters, especially the one made by Vernon to Amy Dockser Marcus of the Wall Street Journal, in comment to a published study that found abnormal proteins in the spinal fuid of CFS patients. : Its difficult to have a diagnostic test based on spinal fluid. You cant just go poking everyone in the spine.

88.46% of patients who took the CAA poll on this thread (http://forums.phoenixrising.me/showthread.php?10169-Caa-poll/page12) think CAA needs to change direction and leadership, and so far 591 people have signed the Petition to Disassociate From the CAA as Our Advocacy Representative http://www.change.org/petitions/pet...ion-of-america-as-our-advocacy-representative

THe list goes on. Too bad the money isn't going to WPI. They are much more deserving of it.

 

[caledonia]

I didn't really want to get into a big argument, but yeah, many many PWCs no longer support the CAA, including myself.

It would be great if next year the charity was changed to WPI.

 

[MEG]

Sushi,
Amazing event, and thanks for the post.

 

[markmc20001]

They got trees in new mexico? Looks like a great place to ride!

Love mountain biking and off road motorcycle riding. Looks like there are many place yet to see and ride.

Would love to dust off my bike and hit those trails.