Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Thursday, March 12, 2015


Out of the blue I received the email below from my brother today.  It assesses my progress with ME/CFS.  Although it was meant to be funny (and it is), it is actually surprisingly accurate.

I came up with another barometer in assessing your progress with CFS. It assumes that there is negative correlation between the number of blogs you post and how you are generally feeling/progressing. For example, the higher # of blogs you post, the worse you feel over a given period of time. This assumption follows the belief that the more you are crashing, the more you are thinking about CFS and the more you are blogging about CFS. The opposite relationship should hold true as well. The less you are crashing, the less you are thinking about CFS and the less you are blogging about CFS.  
The obvious problem with this metric is that you have likely gotten tired of blogging over time regardless of how you are feeling. Therefore, the blogs naturally have become more infrequent with the passage of time. This measure ignores that issue and should only be referred to for general trends. Furthermore, it is not a linear relationship, i.e., ½ the amount of blogs does not mean that you are feeling 2X as good as baseline. 
Below are the # of blogs per year (please note I have not broken down monthly yet and 2011 and 2015 I have excluded because they are stub years): 
2012    139 blogs 
2013    75 blogs 
2014    43 blogs  
Two other contributing factors to above. 1) It was a slow day at work 2) I was inspired by reading some of your blog today. If one thing is clear, you want hard numbers and facts to back up CFS diagnosis, treatments and progress.  
Without knowing anything about CFS, this is the best I could come up with. The good news is my analysis reveals that you are indeed feeling better.

I have to say, his analysis is pretty accurate.  I do blog more when I'm feeling worse--up to a point. There's a point where I feel too sick to even blog, but I'm one of the lucky patients who rarely crosses that threshold.  And yes, I'm giving this the "Tracking" tag -- it's as good a measure as any other.

It also reminds me how lucky I am to have family members who generally "get it" and don't think ME/CFS is a joke. So many patients don't have that.

I'm anxiously awaiting the promised monthly breakdowns!

Wednesday, March 4, 2015

Wait, now I can drink coffee?

This disease is so odd, the way it evolves over time.  For the first three years of ME/CFS, I would crash if I drank coffee.  Even decaf.  And believe you me, I tried many many times, such is my love of coffee.  I kept thinking, "oh, the last time was a fluke.  I just happened to crash right after drinking coffee  It will be different this time."  It took about 8 to 10 experiments before I finally accepted that I couldn't drink coffee.

Recently, I've tried it again, starting with decaf, and all of a sudden I can drink it again without crashing.  I don't know if that means I should, but I just can't emphasize enough how nice it is to know that I can if I want... at least occasionally.

[1/27/15 update: I am no longer able to drink coffee.  That only lasted about 5 months.]

On the bad side of things, that aching in my kidneys that had gone away for so long is starting to come back again.

That's how it seems to go with ME/CFS for me ever since I got it.  One issue will resolve itself, but another will arise.  Often it feels like a zero sum game.