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

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

Friday, December 20, 2013

My experience with acupuncture as a treatment for ME/CFS

I've been interested in acupuncture as a possible treatment for ME/CFS for about a year and halfever since reading an article linked in my prior blog post about acupuncture being a potential Th1 immune booster.  Nobody would expect acupuncture to cure them of ME/CFS, but I figured it was possible that acupuncture could provide marginal improvements in immunity and energy and potentially halt a crash. But every time I wanted to try it in the past, there was always another treatment that seemed like a higher priority.  Then last week I started to feel a mini-crash coming on so I finally scheduled an appointment with a local acupuncturist.


One the one hand, I've known at least two other PWMEs who tried acupuncture and neither of them stuck with it.  The first said she felt only a tiny bit better after each session, but it wasn't enough to continue paying for such an expensive treatment (usually not covered by insurance).  The second actually reported that acupuncture made her worse, and that it brought on an insatiable hunger.

On the other hand, there was the article linked above (which admittedly only dealt with electro-acupuncture... on mice).  So I had two anecdotal stories and a vague article about a study on mice.  I would just have to try it myself to know for sure.  For science!

Finding an Acupuncturist

I was determined to hire the best acupuncturist in my area, so I took to the internet and Yelp until I was satisfied that I had found the best.  Frankly, I really wanted my acupuncturist to be Asian, trained in Asia, since acupuncture is a Chinese art/science.  The person I identified as "the best" was actually Japanese (not Chinese) but somehow I felt that that was better than a random Caucasian.  She had a very quintessential Japanese female name.  I'll call her Midori.*


Midori's office is in the same medical building as my GP.  I arrived 15 minutes early to fill out all the usual paperwork as with any first doctor appointment.  Of the 10 or 12 boxes that I could check as "reasons for your visit," the top was Chronic Fatigue Syndrome.  (They weren't alphabetized)  Another choice said, "Immunity."  I took this as a good sign.   

The receptionist determined that my insurance would cover $30 of the $85 fee, so I settled up the difference and was the lead to a room that was a cross between a doctor's exam room and a day spa massage room.  Actually it was more like an exam room in most respects, except it had a massage table instead of an exam table, and the room was filled with the sounds of some dreamy new age music ala a day spa.

Midori came in shortly after and asked me a series of health-related questions for about 10 minutes. What's your diet like?  Do you eat fish regularly? Do you exercise?  Her Japanese-American accent was quite thick, so we had to repeat things for each other occasionally to make sure there were no unfortunate misunderstandings.  Annoyingly, she referred to my condition several times as simply "chronic fatigue" and asked if I "just want more energy."  I gently refocused the discussion to my immune system deficiencies and emphasized immune boosting and inflammation reduction as the goal of treatment. She seemed to understand.  She said that I should drink at least one glass of water with lemon in it each daythat this is good for my liver, which in turn is good for immunity.

At the end of this interview, Midori said that she would focus on total body circulation and flow of qi (pronounced 'chi'), both of which are good for immunity.  

"Tons of Needle All Over" Me

Unlike a massage, there is apparently no removing of the pants in acupuncture.  I learned this only after removing my pants and being instructed to put them back on.  I only had to remove my shirt and roll up my pant legs to the calves and I was good to go.  I laid face down on the table first. Midori pinched and poked me on my neck and my ankles, perhaps taking stock of my qi.  She said that the needles are thinner than the width of a human hair and that I wouldn't feel much at all.

As I lay with my face in the massage table's padded face-hole, Midori inserted two needles into the back of my neck.  She was right, I hardly felt a thing.  I had to take her word for it that there were, in fact, needles in me.  Four or five more needles were inserted into my back, and two more in each foot/ankle area.  

Midori said in an easy, sleepy tone, "there are now tons of needles all over your body. I  will come back in ten minutes."  

In ten minutes, Midori came back and removed all the back needles and instructed me to turn over onto my back. This time, she put the needles in my hands, arms, chest, and feet, culminating with a single needle at the very top of my head.  Again she said the thing about "tons of needles." I smiled at the mental image.  And then she left the room again for another ten minutes.

This time I had a chance to look at the needles.  Unlike in pictures and TV, the needles didn't stick straight out into the air.  They hung curled over and limp from their insertion points.  

I tried to determine if I felt any different, but Midori had placed a portable heat lamp over me so it was impossible to tell whether I was feeling the mysterious qi or just a GE lightbulb.  I felt like I was a fast food meal.  

Midori soon reentered the room, removed the needles and told me to put the rest of my clothes back on. Back in the reception area she told me that I needed more work and that she'd like to see me next week.  I said I'd think about it.  Her parting advice was to drink plenty of water to flush out my system now that all the toxins had been dislodged into circulation.

The After Effects

As I walked out of the building and toward my car, I assessed how I felt. Quite frankly, I felt that the whole experience was a "poor man's" massage.  I felt the familiar boost of calming energy that one gets after a professional massage, but only about 50-75% of it.  I could tell that my circulation was better and my head was clearer, but again, I couldn't help feeling that it wasn't quite as effective as a one-hour Swedish.  And just as after a massage, I felt intense thirst.  I'm convinced that both massage and acupuncture work in similar waysthat somehow improved circulation is the point of both, and that both lead to unquenchable thirst.  In different degrees. 

I also noticed that the glands in my neck felt swollen, whereas they weren't before the treatment.  As the day went on, this evolved into the tongue swelling that I often get when my glands get particularly swollen.  I felt that the treatment may have stimulated my immune system, but perhaps stimulated the wrong side of it.  This felt more like Th2 activation than Th1.

Now, two days post-treatment, I haven't noticed much positive improvement.  If anything, the treatment had more undesirable affects (gland swelling) than benefits (slight increase in energy on the day of treatment.)  I'm glad I tried it and satisfied my curiosity, but I don't think I'll be patronizing acupuncture again.  My sense from Yelp reviews is that acupuncture works better for people who have pain issues. In the future, if I feel like I really need to part with $85, I'll get a massage instead.

*not her real name


  1. Hey Patrick, entertaining to read about your experience with accupuncture. I have also considered this, but again just never get to it in lieu of something else to try. Have you ever discussed saline IV's with your doctor? I still get these 2x a month, and feel 4-5 days off slight uptick in energy, but a more clear head. I am on month 3 of these, and the results are very consistent each time. Takes about an hour for me. I passed my 3 year illiversary recently, so I usually reflect a bit. I am a bit better now than when this whole thing began, but I know part of that is knowing how to manage it better along with some additional treatments. Great to hear that some medical research is progressing in the right direction. Let's hope 2014 brings some good news in that area. Merry Christmas Patrick!

  2. Great post! I have been curious about acupuncture for a while now, and this answered a lot of my questions. Keep up the awesome work on this blog!