Thursday, April 13, 2017

Back from Vacation & Research Round-up

Hello! I'm still here! Or rather, I am back! My husband and I took took a vacation camping in Virginia this past week. This was a much-needed getaway for me after a painful and frustrating winter of often being housebound due to painful, swollen feet from erythromelalgia. My feet finally cleared up enough - and the weather finally warmed up enough - for us to take this trip.

My husband and I kayaking at belle Isle SP, VA
It was a wonderful, relaxing week for us. We took our pop-up camper (home away from home) and enjoyed two beautiful state parks in Virginia - Pocahontas State Park just south of Richmond and Belle Isle State Park north of Williamsburg. Both were lovely places, and we enjoyed some short hikes (still limited by my painful feet) and a bit of easy kayaking. On the one rainy day, we explored a bit of Richmond and had some great meals (good food while traveling, too). And we capped off the week with a visit to one of my college roommates and her husband (who also went to school with us) in Williamsburg - great to catch up and lots of laughs!

(If you are wondering how I can manage camping, travel, and outdoor activities, this blog post explains all that, with helpful tips).

On the ME/CFS side of things, the organization Action for ME published a Research Round-up. You can read all the details of the studies here. Though there is nothing earth-shattering here, it certainly shows continued advancement in knowledge of what is behind ME/CFS and how to diagnose and treat it. Here is a quick recap of the studies they list:
  • An Australian study is investigating a potential biomarker for ME/CFS that could help in diagnosis. It's a specific protein that was higher in ME/CFS patients after standing than in healthy controls. More research is needed with a larger group to confirm whether this might work for diagnosis.
  • Another study showed that brain function in people with ME/CFS was significantly worse 24 hours after a 30-minute stationary bike ride (while brain function improved after exercise in healthy controls). Though this fact is clear to those of us with ME/CFS, the study provides additional proof of the severity of Post-Exertional Malaise aka exercise intolerance.
  • A Dutch trial using an RA drug for ME/CFS patients didn't show any significant improvement, but noting that certain inflammatory markers were high in ME/CFS patients might be helpful in future studies.
  • A study of 16 people who described themselves as "recovered" from ME/CFS compared how they each defined recovery - interesting because one person might define recovery completely differently than another, especially after being very sick.
All interesting research, with some intriguing points for follow-up.

I am working to catch up on e-mails, Facebook, Twitter, etc, so please be patient with me. Hope you are enjoying this spring weather that has FINALLY arrived on the East coast (though it brought with it severe allergies for my son and I!).

Relaxing with a good book & a campfire


Jane T said...

Sue, thanks for the informative, helpful, and beautiful posts! It's nice to see you able to enjoy the things that you love which bring you joy and fulfillment. Your husband (I believe) who you are kayaking with reminds me of Dr. Ron Davis! Haha. That's a compliment. I've met him in person and I know he's brilliant, but he's so humble and genuine too.

Sue Jackson said...

Thanks for the kind words, Jane! It is SO important in our limited lives defined by restrictions to make time for things that bring us joy :)

Yes, that's my husband! Thanks for the compliment.