Wednesday, January 05, 2011

Interesting Resources

Well, my day started out the same as yesterday - I woke feeling fine, got Craig off to school, and my pulse went through the roof again mid-morning!  I got out of the shower and strapped on my new heartrate monitor, and my pulse rate was 145!!  Those showers are killers.  So, it's another Plan B day.  Today I actually got so far as to plan meals for the week and make a grocery list but had to once again postpone plans to shop.  Fortunately, there are still enough Trader Joe's ingredients for two more dinners!

Just wanted to pass along a few resources that have come to my attention this week:
  • CureTogether is a website that surveys patients about symptoms and treatments for a variety of conditions, including ME/CFS.  Click on the tabs to see lists of symptoms, causes, and treatments reported by patients, a graph showing treatment effectiveness (not much on the high effectiveness side, of course), or to take their survey to add your own information to the data, which I did yesterday while stuck on the couch.  It's interesting, though I think they're using the term "treatment" loosely (it includes things like "rest more" and "avoid people who don't believe in CFS" as well as actual treatments).  Take a look for yourself.
  • NIH is starting a Listserve for ME/CFS, which they'll use to communicate new information.  Here is a blog post from Phoenix Rising that explains how to sign up (it's quick and easy).  Besides the benefit of getting the information, signing up will also help to show NIH how many people care about ME/CFS because they closely track participation.  I signed up.
  • For those battling Lyme disease as well as CFS, I read an excellent summary of the recent ILADS Conference on  Lots of interesting - though sometimes conflicting - information here on treatment approaches.
So, that's it for today.  I'm going to attempt a quick trip to the corner drugstore to pick up a prescription and more milk.  Not quite what I had in mind for today, but that's Plan B!


  1. I will bookmark this info, Sue. And the fact that you have a heart monitor is inspiration for me to follow-through with my plan this year to give that new doctor a chance, and get some well-needed health concerns checked-out, including my heart.

    Even though it is going to get costly!


  2. When the body talks..we need to listen!
    Thanks for all the info here...very helpful.

  3. Thanks to link to cure together.
    Interesting to read the dots.... tried many now trying to eliminate dairy & wheat & see if that will help
    have you heard/read much about diet & CFS? - Maybe I am clutching at straws.

    Hope you do ok today ((HUGS))

  4. @Judy - More about my heart rate monitor in a future post - I just got it for Christmas (at my request!) and have been experimenting - fascinating so far!

    @Cottage Tails - I think it's worth a try for anyone with CFS to try dairy and/or wheat-free, simply because CFS often causes us to develop food intolerances (dairy for me, after 37 years of drinking milk daily!) It's another thing that I don't really consider a "treatment" as such because it is only a response to CFS's effects. but certainly it might help some.


  5. Anonymous1:39 PM

    Good for you getting a heart monitor! OI/POTS is so easily triggered. Take care!


  6. Thanks for the info -- looking it up!