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

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

Monday, July 7, 2014

3 Year Anniversary - Looking Back

Somehow, almost an entire month has passed since my last post.  I'm not sure how that happened.  In the meantime, my 3-year ME/CFS anniversary  has passed.  These so-called "sickiversaries" make me reflect on how I've progressed and changed since first getting ME/CFS.

As I wrote last year, I dreaded the 3-year anniversary because researchers have noticed fundamental differences in the physiology of patients who have been ill with ME/CFS for greater than 3 years.  For example, patients of 3+ years typically have cytokine profiles that are different from newer patients.  I've also read that if a patient has any chance of recovery, they will usually recover within the first 3 years.  After that, the chances of recovery fall significantly.  All this suggests that something occurs at about the 3-year mark that changes the course of ME/CFS for the worse.

For now, however, I am not too worried about having passed the 3 year mark because I have been doing relatively well lately.  It's always easy to brush off these types of concerns when you're doing well, isn't it?  Over the last 2 or 3 months I have been doing well enough that at times I've even wondered, "Am I in remission?"

The answer to that question is an emphatic NO.  Every time that question arose in my head, symptoms would flare and I would be reminded that I am still quite ill in many ways.  But it's remarkable that the question even enters my head sometimes.  During my first and second year, I would have never entertained that thought, even for a second.

As regular readers may know, I keep a daily health chart, and I calculate an average of my overall daily rating at the end of each month.  When I charted my monthly health averages over the past 3 years I saw a very slow and steady rise.  The increase was so slow and steady that it was imperceptible from month to month as I lived through it.  I could only see it after graphing it visually.  But I know that it's real (not simply a shift in my rating sensitivity) when I think about certain activities that I was unable to do two years ago and that I am able to do now.  For instance, I am able to perform maintenance work around the house and garden without much, if any, consequence.

Yet, there are still many signs that I am fundamentally ill, particularly in my immune system:  My natrual killer cell activity is still pathetically low.  My IgG subclass 3 is still low, out of range.  I still have ongoing Candida overgrowth, another sign of a weak immune system.  And I still suffer frequent sore throats.  When these sore throats arise, my tongue swells so badly that it becomes difficult to talk. I still experience shortness of breath on a regular basis, although that symptom has diminished over time.

There are many other symptoms that I still experience regularly--too many to mention here.

Post exertional malaise (PEM) remains a problem, but the threshold of what I can do before I trigger PEM has risen over time.  During my first year, PEM could be triggered simply by standing for too long, or by walking a few hundred yards.  Now I can do most activities of normal day-to-day life without triggering PEM.  However, if I venture into cardiovascular exercise, I will crash with PEM.  (I was reminded of this just last week when I got cocky and decided that I was well enough to handle a bike ride.  Three days later I crashed badly with that unmistakable PEM feeling.  Luckily, the crash only lasted two days.)

So my challenge now is to maintain my current level of health and possibly even give myself a chance to improve further.  The main idea is not to do anything that will make me regress.  That means, I must fight the urge when I'm having a good day to go crazy and do everything, overwork myself.  I have to always remember that blood tests and my own body are telling me that I'm not "OK" even though I may feel OK sometimes.

Some readers will of course want to know how I improved.  This is a really difficult question to answer, and the honest answer is that I don't really know.  I will try to formulate a theory in future posts, but my responses will be educated guesses at best, and I don't think my improvement was attributable to any one treatment.

I continue to believe that improving with ME/CFS is a combination of luck and, sometimes, putting dozens or hundreds of puzzle pieces into place before anything becomes clear.  This disease is simply too complex and multi-factorial to expect much of a difference from one or two treatments alone.  But then again, I've known many patients who have gone to much greater lengths than me to find improvement, and they only got worse for their efforts.

My suspicion is that improvement is often a matter of luck: perhaps it's stumbling on the right combination of treatments, in the right order, to match each of our own unique etiologies.  And even then, sometimes improvements are fleeting.  It's also clear that what works for one patient, usually doesn't work for the next.  We are clearly divisible into subclasses, in my opinion.  Such is the frustrating nature of our disease.


  1. Good post. It is so frustrating to now know what is helping. I take a variety of supplements which I "think" help, but stopping would risk worsening which I don't want to try!! Can't win!

    My own tactics are currently about trying to avoid PEM as much as possible, as I seem to always loose something for good if PEM occurs.

    1. I sympathize with your frustration Sally. Sometime soon I plan to start experimenting with taking fewer supplements to try to determine if there are any that are NOT contributing to my improvement. As you said, though, it's a scary risk... I don't want to lose everything I've worked so hard to gain.

  2. Good to hear that you're getting better! Hopefully you can keep these good results going :)

  3. Greyson James -

    One thing I do to help clarify how changes affect me (such as new supplements) is eat the same diet every day at the same time, for weeks on end.

    This sounds crazy (nutritional deficiency issues pop into mind), but it's a tactic that has really, really, really helped me pinpoint what things help and what hurt. It's fascinating how eliminating diet as a confounding factor really makes clear how a new supplement affects me.

    I might go one, two, or three weeks eating the same thing every day. Then I'll break that and eat very nutrient dense foods (organ meats, eggs, butter, lard, veggies) to get nutrients back that might have been depleted.

  4. Patrick,

    For the most part I think it's wise to ignore the 'you won't get better or recover' if you don't within 3 years. I know a half dozen people personally, and some online, who were sick for anywhere from 7 to 17 years, and all recovered and have remained well with the exception of 1, who relapsed for six months in 2012. He's been back at work for over a year and is in his 60's.