Why I use the term "ME" over "CFS"

I feel as if I should explain why I, an American, title my blog an "ME" blog, rather than a "CFS" blog. Naturally, I am aware that the American Centers for Disease Control (CDC) long ago abrogated the term "ME" in the United States, in favor of the more general term CFS.  But, like many people, I believe the term "chronic fatigue" stands as one of the greatest misnomers in the history of medicine.  I won't expand on that topic, as there is literally nothing new to be said.

But I will say that the notion that illnesses should be defined by political entities seems ridiculous.  For purposes of this blog, I couldn't care less what the CDC labels it.  (Well, I do care in the sense that I hope they change it).  But here, I use the term that I personally prefer, national boundaries be damned.

Within my blog entries, sometimes I use ME and CFS synonymously, or as part of the "ME/CFS" label.  I understand the argument of those who say that we shouldn't use "ME" and "CFS" synonymously -- that they represent distinct categories.  Proponents of this argument correctly point out that CFS is a diagnosis of exclusion and, therefore, potentially describes a number of unrelated ailments.  However, the majority of the ME/CSF community uses the terms synonymously.  So while I respect those who fight to distinguish the two, I choose not to make the distinction here.  

I also understand those who say that "ME" isn't an adequate descriptor of the illness because it describes a neurological condition, whereas most people who consider themselves to have ME have symptoms that reach beyond the neurological, including immunological and endocrine.  I agree that, from an etymological standpoint, ME is a poor descriptor. But I still believe it is the better of two terms, so I'll use that for now until we come up with something better.

Suspending LDN....for now

Unfortunately, I am going to suspend the low dose naltrexone (LDN) experiment....for now. I have been on a moderate crash since Wednesday, which is about when I started taking the LDN. The crash and the LDN may be completely unrelated--in fact I think they probably are--but I can't take the chance.  Even if I only have a slight suspicion that a treatment is making me worse, it is extremely difficult to push forward with that treatment in spite of the suspicion.

Unfortunately, a trio of old symptoms which I thought had been resolved, have returned with this crash: shortness of breath, swollen tongue, and G.I. distress. None of these are normally reported side effects of LDN.  I have also experienced the usual side effect of LDN: insomnia.

If/when I return to normal functioning within the next few weeks, I plan to eventually resume the LDN and see if these symptoms return. For now, I'm disappointed, especially since I was doing so well before this crash. I almost wonder if I got too greedy and should have simply left well enough alone and not taken the LDN. There's always a temptation, when we get a little better, to push ahead and try to improve even further. It seems many times, we end up backsliding instead.  Having said that, I'm not ready to write off LDN.  I will give it another chance in the future.  If it fails me again, I will probably drop it at that time.

Maintaining Happiness with ME/CFS

Lately, I have been giving a lot of thought to whether it is possible to maintain my previous level of happiness now that I have ME/CFS. While I certainly wouldn't say that I'm unhappy now, I'm just not as supremely spirited as I was pre-ME. At first, I thought it would be impossible to be as happy as before ME. But after giving it more thought recently, I'm not so sure.

The concepts of quality of life and happiness, while similar, are distinct. The definition of "quality of life" includes physical and mental health, recreation and leisure time, and social belonging. Now, I don't think anyone, no matter how much they try to delude themselves, can deny that ME/CSF strikes a major blow to quality of life.

But is it possible to maintain happiness while suffering a reduced quality of life? Theoretically, I think the answer is yes.

I'm reminded of a lyric from the song The Will to Live, by Ben Harper:

Then I met a man who had to walk with his hands.

Born into a world he couldn't stand. 

Blessed with life but cursed as a man. 

Still he walks taller than most of us can

Most of us probably know someone who, despite being dealt a bad hand in life, seems inordinately happy. There's a gentleman that works in my office building who is confined to a wheelchair. I pass him in the halls and elevators, and we chat in the the lunch line. He seems, by all indications, to be one of the happiest people around. While I'm sure he deals with his share of pain privately, one cannot fake his apparent level of happiness on a consistent basis. He always seems to be laughing and joking and making new friends.

So I'm interested in how people facing such adverse circumstances manage to remain happy despite reduced quality of life. These examples tell us that it's possible, and I'm beginning to sense that I will get back there eventually. But how?

I don't have an answer yet, but I will get there. I'm interested in reading the biographies of other people who maintained happiness despite challenging circumstances; people like Helen Keller. I think I will incorporate my search for answers as an ongoing theme of this blog. And, as always, I'm interested in hearing from other people who've pondered this question...

My hot streak ends, but there's good news on the horizon

Finally, after 15 days of high functioning (above 75%, with only mild flu-like symptoms), I came crashing back down today.  But this time, instead of bemoaning the crash, I just feel thankful for an unprecedented run of good days.  I knew it had to end some time, so I tried to enjoy every minute of it while it lasted.  I haven't strung together 15 good days since I became ill in June, and one of those days was my best ever (based on my personal rating scale).  I'm not sure if the Famvir or the methylation protocol had anything to do with it, but it's certainly possible.  

As for what caused the crash, I have two theories.  1) I ran a couple of errands yesterday and allowed myself to become stressed out.  I ran late for two appointments, and found myself speeding around and yelling at other drivers.  It felt so good to be part of the world again, I got carried away.  While I wouldn't normally think this could cause me to crash, I've been warned by so many veteran ME/CSFers that days like this can cause a crash, that I tend to defer to their expertise. I simply have to learn to take it easy when I'm feeling good, or I'll be doomed to repeat this cycle.

2)  The other possibility is that the crash is a reaction to taking low dose naltrexone (LDN).  I began taking it last night, starting with a very low dose of 1.1 mg.  But, the commonly reported side effect of starting LDN is insomnia, not fatigue, so I'm less inclined to give credence to this theory.

Finally, the good news!  I've been on the waiting list for my first choice ME/CFS specialist doctor, but his schedule is so impacted, he couldn't see me until late August!  I just learned a few minutes ago, by a stroke of good fortune, my appointment has been moved up to April 27th--four months earlier than expected!  I'd do a little dance if I had the energy.  If you're reading this, thank you to the person who helped move my appointment -- you know who you are!

Stevia chocolate: a godsend

Since eliminating all bread and processed sugar from my diet in November, my taste buds have been protesting against this cruel depravation. They're screaming for stimulation. Much like me, they've been struggling to adjust and accept their new limitations.  Also like me, they try to bargain with these limitations, to cut corners, and to cheat the system. And as we have both found out, there aren't too many ways to cheat the system.  For the most part, we're stuck with our new limitations.

As part of this bargaining process, we went online a couple of weeks ago to explore what stevia-made sweets might be available for mail order. As it turns out, there are virtually none. The US stevia industry is simply too new to have gained a foothold. My heart sunk.

That's when Mrs. Calvin came to the rescue.  Being nothing short of a genius in the kitchen, she concocted a bowl of stevia chocolate syrup, which, upon first taste, almost had me weeping with joy.  OK, not really "weeping," but, it's difficult to overstate how glorious a bite of chocolate can be after a four month drought.  

We now keep a bowl of this chocolate syrup in our refrigerator at all times.  I drizzle it on plantains, berries, yogurt, almonds, walnuts, and just about anything else that fits in my diet.  I even made chocolate milk using almond milk.  The picture below is my dessert tonight.  Or, I should say, was my dessert.

Stevia chocolate on plain yogurt, topped with flax seed meal

If you'd like the recipe for Mrs. Calvin's stevia chocolate syrup, let me know in the comments and we'll figure out a way to get it to you.  I can't publish it because it's a modification of a recipe that is published elsewhere and...well...I don't want to get sued.  

HealKick

I recently found HealKick, a social networking site for people with ME/CFS and other neuro-immune illnesses who are under the age of 40.  At first I wondered, does age really matter when talking about ME/CFS?  When it comes to exchanging purely medical information--treatments, doctors, etc.--no, age usually doesn't matter.  But, as I'm beginning to see, other social aspects of ME/CFS can be age-specific.

I've only just started exploring the site, but I like what I see so far.  While there's no shortage of medical discussions, the site's strength comes from it's fun, social atmosphere.  It reminds me of a line from the recent Best Picture nominee, the Descendants: "We just, I don't know, we deal with our shit by talking about other stuff and having a good time." -Sid.

HealKick creators encourage members to use their real names instead of handles, and real photographs instead of anonymous avatars.  This lends the site a more personal feel.  Apparently, the site also hosts a large group video chat every Friday, although I haven't had an opportunity to participate yet.

HealKick is still relatively new (created in the Fall of last year), and its membership appears to be growing steadily.  Right now, it's membership is about 10% of Phoenix Rising (470 to PR's 4700+), but that gap should narrow over time.  Although, with its age restrictions, I don't think HealKick will ever lose it's tight knit community feel.

If you're a PWME under 40, it's worth checking out.  And if you do, say hi to me while you're there.

On a hot streak!

Like a lucky gambler at the craps table, I'm on a hot streak, baby!  I've been feeling pretty healthy for the past week, and even found myself dancing in the kitchen this morning. Now that I'm feeling a little better, I've returned to practicing a yoga-like stretching routine in the mornings, which I used to enjoy on and off before ME.  I haven't experienced any post exertional malaise from the routine, so I plan to continue with it, and maybe work some light weight training into the mix.

 I've also started taking the antiviral Famciclovir (generic for Famvir) and haven't experienced any start-up reactions.  Like most anti-virals, Famciclovir works by preventing the viruses (in my case, EBV and HHV-6) from replicating and infecting new cells.  It does not actually kill the viruses, so it's not likely one will see exprience short term results from Famciclovir. (See Dr. Lerner article, at Section II.)  The benefit from Famciclovir comes as the cells that are already infected with the virus die off and are replaced by uninfected cells.  I've read different reports on how long this takes: from a couple of months to a couple of years.  I plan to research this further.  

I haven't yet started taking the low dose Naltrexone (LDN) because I prefer not to start two new medications at once.  I'll probably begin taking LDN some time next week.  Meanwhile I'm still slowly titrating my dosages on the B12 protocol.  I started working Dibencozide into the protocol this week.  I'm hoping the cumulative effect of these treatments will, if not cure me, at least get me feeling close to normal again.

While all of these things are positive, I'm occasionally reminded that I'm still far from 100%.  For instance, on Sunday, my wife and I took our baby girl to meet with some of our friends at the Aquarium of the Pacific, in Long Beach.  We walked around the aquarium for several hours, rarely sitting. Prior to ME, this would not have been a problem, but this time, the flu-like feeling came creeping back.  The good news is, it was mostly gone by the mid-day the next day, but the whole experience was a good reminder of where I am on the road to healing, lest I get ahead of myself.