Daisymay said: Many thanks for taking part and to everyone else who is taking part x



Could you please explain what the metabolic chamber bit is about and involves? Click to expand...

Daisymay said: And that's interesting, the spinal fluid test is for viruses? Do they also test for other things like cytokines etc? Click to expand...

Daisymay said: When do they hope to have finished the trial? Click to expand...

Sure. It's a sealed room, a little like a 12' by 12' prison cell.Air is blown in (it's noisy) and collectors on the ceiling pull in and then analyze everything the occupant exhales. Calories coming in are counted and controlled. They feed you through a little airlock door. Turns out the analysis of the ratio of exhaled O2 and CO2 gives a lot of information about metabolism: Whether the person is burning more carbs, fat, or protein. Sleeping in there was tough for me because of the noise from the blowers. I tried all kinds of hearing protection and did get some sleep but not enough. I'm happy to be done with it. I was in there about 16 hours a day for four days straight.The spinal fluid is being examined in a bunch of different ways. One experiment is doing viral discovery - the technology they use can find known and unknown viruses. They are also doing a sophisticated immune analysis of spinal fluid. I don't know much about it but that experiment will examine thousands of proteins in spinal fluid and compare the controls to the patients to look for differences.I'm not sure. At the current pace, I think it will take about four years to finish (they started a year ago). That's too long IMO and I'm sure many patients feel the same. I've talked to some folks here about how they can speed it up. They tried running a healthy control & a patient through the protocol at the same time. It sounded a little hairy but I think they will try that again. The healthy people don't need as much attention so they should be able to make that work. This protocol has about 40 sub-studies drawing on expertise across the whole NIH. So it's not as simple as hiring more people to work on the study. The protocol calls for many different resources - MRI machines, the metabolic chambers, Avi Nath's neuroscience lab, immunology facilities, the rehab facilities (exercise bike), nutritionists, occupational therapists, cognitive testing experts, the patient rooms, etc., that are also being used in thousands of other on-campus NIH studies. So making it all work together is a pretty big task. I'm impressed with how things are going so far, but I've expressed frustration at the pace. I know other patients have too. So we'll see. There's a bit of a trade-off at play here: This is a very in-depth study, which means it's going to take a while. Each patient stays for a total of nearly four weeks across two visits. The controls stay for almost three weeks each.The first publication out of the study will likely be from the PEM focus group that one person on the study put together. 20 patients did a total of four teleconferences, and their experiences and input shaped the PEM part of the study. Very important work - so thank you to the people who participated. Sounds like that paper is close to publication.Brian