If one goes to (near end of) https://www.fstrf.org/apps/cfmx/apps/actg/html/QOLForms/manualql601-2799.pdf one can see how they are scored. Except for the pain scale (and the composite scores which Lenny Jason may not talk about), once you know the questions, it is just a question of expanding them to fit 100 (in other words, getting a percentage). So the SF-36 physical functioning subscale is 10-30 (which is the same as 0-20) - so one just multiplies each score by five (if you are doing the 10-30 scale, subtract by 10 first). Anyway with the sample tests, they do the scoring for you.
Ms. McCleary: Lenny, theres a lot of interest in the symptom of post-exertional malaise/fatigue/exhaustion, and I have to admit I was responding to questions when you were focusing on that part of the presentation, but a question came in about whether the new measures that your group is proposing and the way that youre asking about that symptom - whether it also incorporates not just physical effort but also mental and cognitive effort, and the relapse that many people experience after trying to do their taxes, or help their kid with third grade math even, that has almost the same effect as physical effort does.
Dr. Jason: Thats a great question. Theres no question that its not just physical activity that can cause these types of symptoms and mental activity can also do this. There has been work that has been done in that area, and certainly I think that the reason the exercise challenges are so interesting, you know - Staci Stevens and the Lights and many others who are doing such incredible work in this area - are that its really much easier to quantify basically having a person kind of do sub-maximal or maximal exercise depending on, you know, Gaines work is also very important.
So the key question is how do you operationalize it, so that you can actually have a person go through a procedure and then see these types of changes, biological changes. And ultimately, probably a little bit more work now has been done with the physical challenges. I hope that the other types of challenges will also be more explored. Theres some preliminary work in that area. Theres no question that both of these types of challenges are going to have physiological changes that could be used by us to help, again, identify patients who have this very interesting phenomenon of post-exertional malaise.
Its just such an interesting phenomenon. Remember with depression, getting back to the depression vs. MS/CFS category, you take a person with Major Depressive Disorder and you tell them to start working out, do some aerobic exercise, get more active - they feel better. They will come back and report, gee this is making me feel better. Isnt it interesting that the ME/CFS person whos told to start getting a little bit more active and to start pushing themselves a little bit, they will experience post-exertional malaise. So you have, again, two fundamental different kinds of events occurring for two different type patients. So why would you want to put them both together? You put them together and youre never going to find those types of biological markers that are specific for ME/CFS. So again, an excellent question and I think that very similar types of genetic changes probably could occur. Again, this is something that we need more research on.