I put some toothpaste on my toothbrush, and raised the brush to my mouth.

“Oh Gawd,” I thought to myself. “Again with brushing my teeth?”

And that’s how it was. Everyday things were such a struggle that it had become a thing. At one point, I had to start my day by brushing my teeth, then lie down for a while, then wash my face. Showers were carefully timed for days when nothing else was imperative. This was better than when I couldn’t get out of bed but it was hard to feel any gratitude. 

Once, I pushed myself through brushing my teeth and washing my face in one standing by the bathroom sink. “I did it!” I thought triumphantly. Except I was useless for the rest of the day.

Of course, one could think of this as an opportunity. I wasn’t useless lying on the sofa. I was be-ing. An opportunity to be.

One coping strategy became showering at night. That way, I was wiped out afterwards but all I had to do was go to bed. But amidst all the strategy and effort it took to accomplish the things that were supposed to be what happened on the way to doing the truly important, it was hard to feel any sense of worth. Who am I if I have to think so hard about doing small inconsequential things?

One day I had my brush in my hand again. I had reached the point where I was regularly brushing my teeth and washing my face in one fell swoop, without ruining the entire day. But the whole thing was still a challenge. It seemed like I had just faced it down, only to have to face it again. Then my eyes met those of my mirror image.

“This, is my spiritual practice.”

I smiled, because my little inconsequential, esteem-diminishing challenges had become my joy. So I brushed my teeth without resentment.

Then I got dressed. And I started to feel a little resentment at how hard it was. I stopped myself. “This, is my spiritual practice.”

I wasn’t useless, I was here! My whole day was my meditation. The pain and resentment only came in when I allowed myself to be separated from that. Even the pain and resentment became mere triggers to remind myself of my true worth, the value of my very presence. My breath was in and of itself an accomplishment.

This, is my spiritual practice.

There are regular reports in the media asserting that the cause of Chronic Fatigue Syndrome is unknown. In my humble but strong opinion, they’re wrong.

For example, National Public Radio asserted that …

Researchers still are not sure why people suffer pain, exhaustion, anxiety, insomnia and other symptoms, sometimes for years. They have suspected viruses, but have not proven which one.

 

Actually, Jacob Teitelbaum, M.D., has shown that a variety of physical and emotional triggers can lead to Chronic Fatigue Syndrome/Fibromyalgia Syndrome (CFS/FMS). I’m using a term he coined, because he has also demonstrated that Chronic Fatigue and Fibromyalgia are in fact the same underlying condition. 

That underlying condition is hypothalamic dysfunction. When the body is sufficiently overwhelmed, this causes the hypothalamus in the brain to blow like a fuse. The body shuts down in an attempt to protect itself. This shutdown means that everything from hormone production (adrenal, thyroid, sexual and many more)  to digestive function, immune function and cellular energy combustion, ceases to work properly.

This is tricky because the set of triggers that leads to hypothalamic dysfunction is unique in each case. Possible physical triggers include bacterial infection, viral infection, fungal infection; emotional triggers include grief, trauma and certain neural patterns. To add to the confusion, once triggered, the onset of the disease can be gradual or sudden. Also, the end result can be as unique as the triggers. Some patients experience just Chronic Fatigue, others just Fibromyalgia and most have some combination of both.

If a doctor tests for, say, thyroid function, it may look “normal.” As I understand it, this is because the problem isn’t just the thyroid. It is the total interplay of thyroid, adrenal and hypothalamus. So, while normal ranges are statistically determined from the population, this doesn’t mean normal for a particular person. Or, size 6 may be the average shoe size for a population but that doesn’t do you much good if your individual shoe size is 8. The test may not catch a small suppression in the thyroid function. But a small suppression in the thyroid, combined with similar suppressions in adrenal function and other parts of the system, can be catastrophic.

When news broke that XMRV may be the cause of CFS/FMS, I wrote here that this didn’t change my treatment protocol. Since the goal of treatment is to turn the fuse back on and get the overall system working, proper treatment shouldn’t really change with the addition of a new infectious agent to the list of potential triggers.

Sure enough, there have been reports as recently as this month, indicating that scientists have not been able to prove the XMRV CFS link. The main reason for my skepticism when I responded to the initial media reports, was that I understood that once CFS has been triggered, the body becomes more susceptible to infectious agents in general, given that the immune system is now compromised. In my mind, this suggests that you can expect to find more incidences of infectious microbes in CFS/FMS patients, as compared with the normal, healthy population.

It’s worth mentioning that another source of confusion is the fact that some patients get better faster than others. I suspect one of the factors here is early diagnosis. If you can catch this condition before it becomes entrenched then it’s easier to treat one aspect – say a viral or bacterial infection – and get a good response.

The problem is not whether we know the cause of CFS/FMS. Obviously, I believe we know the answer to that. The real problem, is that CFS/FMS does not fit the prevailing understanding of medical science nor does it fit the prevailing model of health care. There are indeed conditions that are specifically connected to particular microbes and your doctor can test for them, prescribe a pill and cure you. What we should be doing is expanding our understanding to benefit the resolution of Chronic Fatigue and Fibromyalgia, rather than trying to shoehorn a condition that is beyond our current understanding, into limited medical models. We need to remember that model means an approximation to help us understand reality. The model itself is not reality.

Before the advances of antibiotics, you had to go to a sanitarium to recover from tuberculosis. Since you couldn’t be treated with a pill or surgery, the idea was to go to a place where your overall system could be supported towards recovery. I have no idea whether one day Chronic Fatigue and Fibromyalgia could be cured by a simple pill. But even if we got to that point, it would still be beneficial to make use of the techniques of recovery that are currently known, so that patients don’t relapse. Maybe the idea of sanitariums needs to be revisited.

As I placed my order online, I realized that this thread of recovery regarding my liver perfectly reflected the overall tapestry of my experience with Chronic Fatigue.

First nobody knew what was causing the pain in my side. Then a doctor in 2008 figured out that it was my liver. Looking back I realize that when I was on a daily regimen in 2006 which included inhaling glutathione and N-Acetyl-Cysteine as prescribed by Dr. Young, this must have really helped my liver. But after keeping up being on a nebulizer every day for over a year, I couldn’t make myself go back.

One doctor tried glutathione capsules with mixed results. I think it gets broken down by the body and so it’s difficult to deliver the required dosage to the liver. Also, the digestive system doesn’t work well when the body is shut down by CFS. Inhaling a liquid mixture of glutathione and NAC from a nebulizer had bypassed these issues. Where oral supplementation is concerned, taking NAC is a more effective way to boost glutathione levels than taking glutathione directly. NAC is a precursor to glutathione.

When I discovered the SHINE protocol by Jacob Teitelbaum, M.D., I found out that Alpha Lipoic Acid is recommended for protecting the liver (in addition to NAC). So I tried that and it helped somewhat. Then I happened to have a conversation with Kent Holtorf, M.D., and he suggested taking Liv.52 by Himalaya at higher than recommended doses. After some experimentation, I discovered that the combination of ALA and Liv.52 got rid of the pain altogether.

I expect my new jar of Liv.52 to arrive this week. Once I’m back on both supplements the pain will be gone again and I will know that my liver is fully protected while I continue my journey to full recovery.

There have been many threads like this in my CFS experience. Over the next few weeks, I hope to share them with you. Maybe the results of my various experiments will be helpful to you in some way. Or maybe your reading this and understanding more about my recovery journey will help CFS patients in general. Bye for now.

My Liver Support Protocol

1. N-Acetyl-L-Cysteine 600mg x1 daily
2. Alpha Lipoic Acid 300mg x2 daily
3. Liv.52 2 capsules x2 daily

My two-minute, KQED Radio segment that aired on Monday is still available as a podcast on KQED’s website. They’ve also included a transcript. Do take a look, I’d love to know what you think. What a week!

http://www.kqed.org/a/perspectives/R201109190735

The essay I submitted to the main NPR station in Northern California has been scheduled for broadcast on Monday September 19! KQED Public Radio is broadcast in Northern California on 88.5 FM and 89.3 FM. You can also listen to their live internet stream in your browser, on your desktop or on your mobile phone. Please see their Listen Live! page for more information.

My segment lasts two minutes and will air three times on Monday. The schedule is listed below in Pacific Time. Please click on a program time to find the corresponding hour for your time zone: 

1. 6:05am during the 6:00am news
2. 7:35am during the 7:30am news
3. 11:30pm during the 11:00pm program

On September 11 2001, I had just left Sun Microsystems. The plan was to spend a few weeks recovering from the extreme burnout I was feeling, then get another job.

Somehow, my plan changed after planes were crashed into New York, Virginia and Pennsylvania. I felt compelled, by a force that would not be denied, to follow a path closer to my heart. That turned out to be starting my Evangelist Marketing business. 

I knew how long to give myself. If Evangelist Marketing did not reach my desired run rate by then, I’d get another job. Who could have imagined that the worst case scenario would be slipping down a rabbit hole into Chronic Fatigue & Fibromyalgia?

I wonder now about the burnout I was feeling. I think I already had a milder version of CFS/FMS, which got triggered into a severe, disabling case when I had major surgery in 2005.

I called Sun that day to check on my ex-team. One of my former employees was trapped in Canada because all planes had been grounded, but everybody was okay.

Another phone call was to Lisa. We had spent Monday September 10 having fun in downtown San Francisco, and celebrating my new found freedom. It now looked like it had actually been our last day of innocence.

On September 11 2001, I couldn’t possibly have accepted what was to come in my life. But having made it through what feels like a decade in the underworld, I’m going to mark September 11 2011, by pondering my life’s purpose. I want to clarify why I’m working so hard to recover. I want to do my best to ensure that I’m fulfilling my soul’s potential. And I believe that my experience of the last decade means that I get to be better than ever in the next one.

I wish you, my dear Realitynibs reader, the achievement of your soul’s wishes for your life. That, as far as I’m concerned, is true freedom.

It turned out that I had called Glenn in the middle of a difficult moment for him. I must have been silent for a full fifteen seconds before I finally spoke. “I’m going to run this by you just in case you’d like to do it anyway. Have you ever been curious to see the inside of KQED studios?”

I practically heard his mood lighten over the phone. “That could be interesting,” he replied. 

“I submitted an essay to KQED and they’ve asked me to come into their studios to record it. I’m hoping that going with a friend will make it a lot easier. I don’t want to hit the wall before we start.”

I’m better than I used to be. So it’s possible that I could get myself there and be okay. But that would be risky. KQED Public Radio is “the most-listened-to public radio station in the nation with an award-winning news and public affairs program service.” I like to think of them as the BBC of America. If I’ve been lucky enough to be invited to have my essay broadcast on their news program, it doesn’t seem reasonable to risk hitting the wall before we begin. Plus going with a friend increases the fun factor!

I’m told that my essay will be on the air within about a week of recording it. I’m not sure if the program is broadcast outside Northern California but it will at least be streamed on the web. There’s much to prepare before next week’s studio session. For example, they’ve asked me to choose possible cuts to my script just in case I run over the allotted time. So I will be pacing myself even more carefully during the week, and getting it all done in between healthcare appointments. I’ll let you know once the broadcast schedule is confirmed.

I’m 90% delighted and 10% anxious. But my piano teacher always used to tell me that I wasn’t really nervous before my music exams – just excited. I’ll keep that in mind.

Learn to pause … or nothing worthwhile will catch up to you.

–Doug King

The above quote gave me, well, pause! Is this what CFS is here to teach me? Maybe that’s what “Morgan” meant when he said I was experiencing a “reality check.”

I’m determined to make good use of this lesson. And when I get further with figuring out how, I’ll tell you all about it!

It’s amazing – the mere process of pursuing this intention is already beginning to reduce my anxiety. See you soon.