15/12/2021
HOW CAN WE MEASURE IBM TREATMENT RESULTS?
One of the challenges of working with a progressive muscle disorder like inclusion body myositis (IBM) is quantifying the medical treatment outcomes.
All of our patients can say that they “feel better”, but it is important to move beyond anecdotal to empirical evidence.
Inclusion body myositis is widely considered to be irreversible. The Lymphatech Clinic offers an 8-faceted treatment approach (link with details on our approach in the comment section). With that approach, we have seen CPK levels normalize and improved strength and range of motion.
But again, the question is, how to quantify this progress? In addition to our other tests, we decided to also use a dynamometer. This is a device that is used to measure force. Now, please understand that the amounts in the table below are quite small for a regular person. For example, a healthy male could possibly create 76 kilograms of force with his thigh. In our case, our patients started with between 6.5 and 10 kg of force.
To be sure the improvement could seem quite insignificant. But even with these small numbers, the improvement in lifestyle can be tremendous. For example, you will see that the force created by the left thigh of the second patient jumped from 6.5 kg to 12 kg. 12 kg is not a lot, but here’s the real-world difference: That patient no longer requires assistance for a short walk. Instead of needing to ask for help and a walker, they can now walk up to 7 meters unaided.
Or with patient 1, you will see that the force created by the right wrist improved from 1.1 kg to 2 kg. Again, 2 kg of force is not a lot, but the real-life result is that he could use a pepper grinder without assistance, or brush his teeth without overt strain.
You will see that in some cases, certain muscle groupings improve for some patients and some do not. What are the contributing factors and why are we seeing significant improvement with some patients and minimal improvement with others?
The only real way to answer these questions is to increase our body of work. With that, we are working towards a goal of 20 IBM patients in 2022. Due to the number of hours we invest in each patient, this is close to the maximum amount we can currently serve in one calendar year.
We do see improvement in our IBM patients that as far as we know is unparalleled elsewhere in the world, yet we are passionate about improving our results. Would you be interested in learning more about how you can be a part of a year of improvement, discovery, and breakthrough for IBM? Please contact us today and we will be sure to keep you updated as we are currently in the planning process.