The challenge of tracking progress in CFS

CFS can be exceedingly difficult to “track” progress because there are no clear markers. My last onset and remission found two indicators were very helpful. The first one, Vitamin 1,25D level which went so far outside of the normal range that the lab repeated the test twice — fearing a lab measurement problem.  The second one, WII Fit, seems ideal for most CFS patients, and repeatedly showed “herx” and improvement over the course of treatment.

Vitamin 1,25 D as indicator of activation level of CFS and other auto-immune conditions

The last time around I was aware of hypercoagulation issues and self-medicated with known and effective anti-coagulants in order to keep working. That is, I did until I started to bruise very easily — at that point I stopped and did a severe crashed in 7 days. Prior to this, testing for hyper-coagulation was constantly returning normal ranges (of what they were willing to test for). Because the items that I were using were non-prescription (or did not require a prescription in the US), the professional medical staff ignored the list. The list included:

  • grape seed extract
  • alpha lipotic acid
  • serrapetase
  • nattokinease
  • lumbrokinease
  • turmeric (very effective against the measure that I was normally high in)
  • racetams (very effective against the measure that I was normally high in)

There was a catch-22 situation. There was hypercoagulation happening but it was being effectively controlled. If I stopped to allow it to spike and thus get significant readings — I would also be unable to work and promoting a situation that could cascade out of control quickly.

Fortunately, Dr. Kim Iller, my physician, was willing to test for vitamin 1,25D (dihydroxycholecalciferol), not a typical lab test, as well as the usual Vitamin D levels. The 1,25D results matched that reported on PubMed for auto immune conditions (Vitamin D metabolites as clinical markers in autoimmune and chronic disease. [2009]. My Vitamin-D levels were at the top of the normal range (intentional) which resulted in the least severity of symptoms (as reported in multiple PubMed studies).

The last test done for 1,25D before I was cleared to return to work had it back in the high normal range instead of being almost off the scale. This appear to correspond well with the change of symptoms.

Some literature:

Suggestion: get a Vitamin D and Vitamin 1,25D lab done at least once every 6 months.

  • If Vitamin D level is not close to the threshold of being high, supplement. Often a daily intake of 15,000 – 20,000 IUs seems to be needed for some CFS patients.
  • 1,25D is used solely as a general state indicator. If it increases, chances are that symptoms have increase and you may wish to re-examine changes that have been made between measurements.

WII Fit as a indicator of CFS state

WII Fit means a WII controller, a WII balance board and the WII fit game. When it first came out, many rehabilitation services adopted them.  Today, you can buy both on the second hand market for around $40-$60 for the game and the board, and $70-$80 for a refurbish WII System.  Often you can find smaller game shops sell them for much less (or garage sales). Craiglist have prices of $20 and $40 often.

Example chart for tracking information on WII FIT

WII Fit is very nice because if offers a wide range of exercises and durations. It also keeps track of a daily status:

  • Weight
  • Performance on two randomly selected tests of cognitive or other processes that are used to predict a “Fit age”.

You can then look at your stats over time to see if things are improving or getting worst. For Fit Age, you typically need to average several days to get a stable number. Some tests you may do very well on and other bad on.

My Experience

I was doing 40-50 min/day of WII Fit before the onset. My WII Fit age was typically in the mid 20’s.  With onset, my performance went up to the 60’s. What I found especially interesting was the change of treatment being reflected in these scores.

  • Starting minocycline, a neuroprotective antibiotic, saw my WII Fit age drop to the high 30’s within a week.
  • Starting Mutaflor (E.Coli Nissle 1917) with it’s headache and severe herx, saw my FIT Age approaching 70 for 10 days and then started to come down.
  • When I was ready to return to work, my average WII Fit age was the high 20’s.

This morning, I did the WII Fit Age and it came in at 21 — not bad for a white haired person!

WII Fit age is helpful for determining if something(drug,  probiotic, antibiotic, elimination) has an impact.

  • Significant improvement after starting is a good sign
  • Deterioration with a herx or similar symptoms when starting something new — suggests that it is having an impact — but the deterioration should reverse itself within 14 days with some improvement over your prior score.

Last but not least, it tracks how much time that you exercise each day.  5 minutes is fine. Just doing the fitness tests is fine. All of the exercises are graded from a MET of 1 (deep breathing only) to an energetic MET of 4. Starting on the yoga choices is strongly recommended.  Do the lowest MET exercises when you start and slowly increase the MET level. Gradual regular exercise helps reduce CFS symptoms — if only by allowing better removal of toxins from the body.

  • If you have payback from doing too much, you can see how much time you spent yesterday and cut that time in half for the next week. Then slowly work upwards again.

CFS patients are absent minded and do not log much information. This is worst because their cognitive abilities are impaired (so what is logged may be very unreliable), see this recent article for more information ( Effects of Time Frame on the Recall Reliability of CFS Symptoms). The WII Fit approach results in information being recorded daily and amount of physical activity recorded.  It is a great encouragement when you see you beating your best scores from two weeks ago — you become competitive against yourself. Fortunately, after every exercise, the WII Fit displays the total time you have been active today. It also nags you to take a break at 30 minutes. You are much less likely to “over-exercise”.