Why we chose this test
Some, but not all pwME can have erratic body temperatures which can be classified into 4 different deviations. These are: low temperature, abnormal diurnal pattern (temperature going in the wrong direction at the wrong time of day), exaggerated difference between minimum and maximum during one day, and also exaggerated difference between the average one day and the average the next day as represented in these images
In the small amount of data that we have already collected, we have seen that those people in this category experience a normalisation of their body temperature during periods when they feel better. Having consulted medical opinion, we are confident that we can capture improvement in health with these readings. We would like to thank Dr Weir (retired consultant physician in Infectious and Tropical Diseases) for originally suggesting we looked into pwME’s temperature patterns.
Example of a personal progress graph generated
The red line identifies the start of treatment. You can clearly see that in this example that before treatment the patient’s temperature profile was highly irregular moving between 5 and 25. After 3 months this had reduced to between 2 and 7 and this was maintained 5 months later.
The graph below shows some of the actual temperature reading data for this patient before it has been converted into a score by the website.
Blue= temperature before treatment
Red= Temperature after treatment
You should use a digital thermometer under the tongue. You should use the same thermometer each time. You should measure at the same times each day, and as far as possible under the same circumstances (e.g. not immediately after eating, drinking or exercise, not in an unusually warm or cold room, not when you are suffering from a virus which is unusual for you, and women should take into account their menstrual cycle).
Take your measurements at 08:00, 12:00, 16:00 and 20:00 for as many days as possible over 10 days. Ideally, we would like 7 consecutive days’ worth of readings, but we realise that this is perhaps wishful thinking. It is more difficult than it may seem as life or ME keeps getting in the way! It may be easier to put an alarm on for each time. You will be able to input your data even if you don’t have 7 consecutive days, but you will not be able to input it if you don’t have the 4 readings per day.
You should be aiming to provide these readings every 3 or 4 months if you can manage it, or if not, before the start of any treatment and at the end of the treatment.