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: fitbit.com
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.