Neurological issues with CFS often results in counter-productive decisions. Patients attempt to remember how they were before starting a treatment and often will not remember or remember themselves being better than they actually were. If they “see no difference”, then terminating a beneficial supplement, drug or approach because it “is a hassle/cost” with no apparent benefit. The key is apparent benefit.
Dissecting Typical Scenarios
- Long duration to see changes
- Example: Supplementing with Vitamin D3
- Shifting from low D3 levels to ideal range will often take 120 days during which there will likely be no “turning point” or significant event. Studies have repeatedly shown major reduction of symptoms.
- Initial Response which stabilizes or become less dramatic
- Example: Yakult (L.Casei Shirota) causing hay fever to disappear for 18 hours
- Hay fever season ends so the dramatic impact disappears. For the next 6 months “it does nothing” and thus is stopped
- Effectively normalizes a condition that slowly returns when stopped
- Example: Turmeric (or Piracetam) reducing brain fog (due to low grade hypercoagulation)
- Going from brain fog to reasonably clear mind keeps someone on it. Hypercoagulation is reduced to normal levels. The supplement is stopped because it seems to not be doing anything. Brain fog slowly returns (impacting the recognition of the benefit it was giving).
So what do you do?
The answer is keeping accurate daily logs. Logs that are based on some form of objective measurement. A few examples:
- The number of hours of sleep each night. Change of sleep patterns is often an indicator — CFS often have sleep problems because of hypoxia(low oxygen) caused by hypercoagulation
- Distance walked — mild exercise does improve CFS symptoms. It may just be to the corner and back.
- Also record time
- Body temperature (at rising from bed is suggested) – CFS typically have subnormal temperature ranges, an increase is a good sign. A decrease may indicate a relapse
- Weight (at rising from bed is suggested)
- I am a strong advocate for the use of WII Fit as a part of daily activities.
- Try finding some regular daily activity – for example crossword puzzle, sudoku, Spot the difference, that has levels. For example http://puzzles.usatoday.com/ has a collection
- Record the time to solve the problems each day
In addition to the above:
- The pills and supplements you take each day, often a supplement drops off the list and never gets returned
- What you eat
The above can reveal items like food sensitivity or positive effects. Remember with CFS often there is a 24+ hr lag between cause and effect, so with no records — you won’t see that a Spicy Thai meal caused the next day to be better!
Where to Record
Use Excel or the OpenOffice SpreadSheet to record the data. This makes it easy to chart data and see trends.