Why we chose this test
Our aim in creating this website was to consider the best ways to represent a patient’s progress in quantifiable measures which could be represented in graph form. We felt that Bells Scale was a good way of a patient submitting their subjective measurements to include all areas of debilitation, both cognitive and physical and that counting the number of steps would provide an objective measurement albeit only physical. Number of steps taken may not necessarily reflect where you are on the Bells Scale as your worst symptoms that day may be cognitive rather than physical.
– We realise that pedometers are not 100% accurate and that actimeters would in an ideal world provide more information as they measure activity overall and intensity not just the number of steps a person takes. However, these currently cost more than £2000.
Example of a personal progress graph generated
In addition to allowing you to view your own personal progress graph the MESH website combines all of the data from its members to allow us to compare different treatments. For an example of comparative graphs see the following link:
You will need a pedometer for this. You can buy ones which store the readings for a week (max £17) so that if you forget to write down how many steps you have done that day, you will be able to retrieve the information for up to a week.
Clip the pedometer on to your clothing each morning as soon as you get up and take the reading as you go to bed that night.
You should be aiming to provide 7 consecutive days’ worth of readings every couple of months, but feel free to do more or less often than that – the more often the better. You may also record fewer than 7 consecutive days each time if you find it difficult to remember each day. Do not leave out days when you cannot get out of bed much, for example only going to the toilet and back. In this case, try and clip on the pedometer so that we can capture the full extent of how debilitated patients with ME can be.
-Our support group has been using the Omron Walking Style III Pedometer available on www.amazon.co.uk and sharing it around the group to avoid the cost of each member buying one (£17). Maybe you can set up a similar scheme with your local support group. If you know of any cheaper good quality pedometers please let us know via the contact us page.
– If you record fewer than 5 consecutive days, whilst your data will still be represented in your personal graph, we may disregard it for our research purposes.