Sunday, September 2, 2012


A few years back I bought and read a book by Dr. Benjamin H. Natelson called Your Symptoms are Real. I have read a great many books on neuroimmune illness, CFS, diet, lyme disease, gut ecology, B12 and so on. Dr. Natelson’s book did not distinguish itself in any particular way - except for one detail. On page 161, Dr Natelson mentioned the benefit of using a pedometer to track increased or decreased movement in illnesses involving fatigue and Post Exertional Malaise. This seemed a good idea so I bought the pedometer type that he suggested (Yamax 701) and had my patient begin wearing it. Like many things the novelty of compiling data on steps taken per day diminished - and more serious circumstances emerged that overwhelmed us, and the pedometer was set aside. However I did not lose interest in nor did I forget the idea – and the subject has revisited me.

Four months ago I stumbled, through my son Peter, upon a newer type of pedometer called a Fitbit. This device is worn clipped on a belt or pants and counts both steps and stairs climbed. What I found most interesting was that this device downloads its information wirelessly to a program on your computer. In this way, it collects or compiles all the data over days, months and years. It has a small way station where you can charge the battery. Each time this way station is plugged into the computer it automatically and wirelessly downloads the most recent information. This download can be done on a daily or weekly basis.

The Fitbit costs about $100 and you can read more about it here:

The wonderful thing about the Fitbit tracker is that it provides objective information or relatively objective information. This is particularly welcome news in an illness that has no tracker of betterment or improvement on therapy. Everything in ME/CFS is self-reported - subjective reporting of the patient, usually via a form. This pedometer device eliminates the uncertainty, bias and confusion of subjective reporting, at least in one category.

The Fitbit purports to be accurate. To me accuracy is less important than consistency. In my case, I pay less attention to the daily steps and more attention to the monthly steps. The program for the Fitbit graphs movement in daily, weekly, monthly and yearly categories.

I know of a number of ME/CFS patients who use this device. All attest to its benefits. One of them has used this device now for four months. She puts it on and gives it no thought - except to program it or recharge the battery. One great advantage is that health care supporters can access the information. For the month of May, this particular patient took an average of 1800 steps per day. In the month of August, the steps averaged 3000. The months in between indicated gradual, measured improvement.

(The question of why this improvement has taken place is another, very confusing matter, and will be addressed in later posts.)

The Fitbit can be used for both general tracking and for specific situations. For instance, if a patient was beginning a new therapy, like GcMAF or Rituximab or Enbrel, he or she could use a Fitbit device to establish a baseline. Over the next six months or so, the patient and physician could both get important information about the patient’s increased or decreased ability to move. The numbers tell the story.

Through my experience with diabetes I have been convinced of the importance of tracking devices. A tracker, particularly a tracking blood test, is absent in ME/CFS - and there is a great need for something to be developed. With existing testing there are various possibilities – NK functionality (LU30), CD57, c4a, MMP-9, Methylation panel, Acumen mitochondrial testing, Nagalase or a combination of all of these. Perhaps others would have suggestions here?

In fighting through the variables of this illness, one longs for something specific, something one can accept for real or as real. In a small way, the Fitbit does its part.


  1. Hi Chris,

    I'm a patient roughly the same age as your daughter, and I wholeheartedly agree with this post! Tom Kindlon has written about the lack of actometers in the graded exercise trials and the sentiment that objective data > subjective data rings true.

    When I went from a moderately ill patient to a severely ill, mostly bedridden patient, I wore a pedometer briefly. But realizing that I could only take 600-800 steps a day was so depressing that I stopped wearing it!

    Fitbit is great idea and I will definitely consider wearing one should I attempt treatment.

    Great post.

  2. Very interesting. Thanks, Chris.

  3. Hi, my 22 year old son, with ME diagnosis has been wearing a pedometer daily for 3-4 years now. This was the only way we could think of, that could measure any improvement when all lab analyses were normal. The first year mean number of steps per day was less than 1000. Now the number is 4500 per day (mean for the last month). Improvement has come with antibiotic treatment for Lyme disease (seronegative), but the point is that this devise is providing a kind of objective picture of improvement. Probably will the fitbit be better, but also this little cheap thing we use, does the job.

  4. Yes, I whole-heartedly agree. Pedometer + heart rate monitor have been my saving graces. I use the Fitbit too and also love love love it's sleep tracking function (wearing it on your wrist to track how much you move around while sleeping). Part of the problem with CFS is unrefreshing sleep and this helps track that too. My sleep has improved from 40% to 60% efficiency at one point and this matched feelings of minor improvements in wellness so it was nice to see an objective measure of that.

    Another test that my doctor does to measure improvement is reverse T3 ( He used it as a measure to determine how much bioidentical T3 medication to give me and it tracked well also with feelings of improvement since it was sky high (53) when I started 3 years ago and has dropped down to 12 since.

  5. Hi Chris, Yours was a timely post. I learned about the Fitbit from a Phoenix Rising post some time ago and finally purchased one about 3 weeks ago. I agree that it's excellent info for both patient and doctor. I had a pedometer (OMRON)before, and wrote down the daily totals but never had the energy to enter them into a spreadsheet to look for trends. Since Fitbit records this data so effortlessly, this is no longer a problem. The old pedometer showed about half the steps of the Fitbit, but as you say, it's consistency that matters, accuracy less so (about 1900 daily steps averaged over 3 weeks). I wore both the OMRON and the Fitbit for a little while for comparison. I think the OMRON under-reported steps and the Fitbit over-reports them, so the actual # of steps is probably in between. I really could have used this over the past several years when trying different treatments. And wouldn't it have been interesting to see what it would have shown at disease onset.
    Thank you for your report and congratulations on the improvement!
    By the way, did you also purchase the premium feature (for export, etc.)?