Thursday, December 02, 2010

ME/CFS Worldwide Patient Alliance

I'm still pretty badly crashed.  I suspect now that it is probably a herx reaction to my Lyme treatment because I cut my antibiotic dose in half for 5 days last week, to reduce the sun sensitivity while I was on vacation, and went back to the full dose on Saturday.  I'm very achy and have a sore throat, so I'm trying to rest and take it easy...therefore, a quick post today...

Just wanted to tell you about a brand-new patient organization, the ME/CFS Worldwide Patient Alliance. MCWPA is a grassroots effort just started in 2010 in order to give patents a voice and help to increase visibility of our illness.  Here's their website, and more information about the organization. They're working on ads to help raise awareness of ME/CFS.

I've signed up to volunteer when the media is looking for someone to interview, and MCWPA has posted my profile on their Personal Accounts page.

If you are interested in either submitting a profile or being available for interviews, contact Tina at

Hope you're doing well this week.


Renee said...

Hi Sue
Sorry to hear you are in a crash..would be expected with just CFS/ME and your trip, but the Lyme adds more into the equation. I had a NAET treatment for a Lyme componet two weeks ago and felt so much better for those two weeks and then..on Saturday I increased my Cat's Claw as instructed and increased my Red Root and added Teasel Root. Bam! Yesterday I woke up feeling pretty awful and today is no better with neuro symptoms adding to the mix. This Lyme is relentless isn't it.
So, I will rest on my sofa and hopefully you can rest on yours!
Thanks for the new website. Looks very interesting...and for your comments on my blog :)

Baffled said...

Love this website. Thanks for the information. I'm going to volunteer. I had been thinking recently that we need something like this.

Sorry to hear that you still aren't feeling well. Rest up.

Toni said...

Thanks for the information on the new website. It looks very promising. I'm going to volunteer.

I hope you feel better soon.