Thus far the NIH’s big Clinical Center study is looking good. They’ve cleared up the definition problem and are focused on post-exertional malaise.
This is a different kind of study, however, than the NIH usually does. It’s an exploratory study. It’s goal is go where no man or woman has gone before with ME/CFS and find new answers. Because of this it’s cast its net wide; it’s looking everywhere from the brain to the gut. But are the nets being cast where the fish are? The body, after all, is an incredibly complex place; there’s lots of room for gremlins to hide out in – lots of room for them to disappear.
We want this study to make a huge difference. We want it to uncover some abnormalities that stick – that provide a foundation for a new era of research at the NIH. This study has that potential. Led by a top researcher at a top facility it will get attention.
One thing is concerning, though – the lack of outside input. It’s great that Ian Lipkin is involved but Ian Lipkin is not an exercise physiologist or a neurologist or an immunologist. We’re not immunologists either, of course, but the ME/CFS community is widely read and we have our bodies as our personal samples.
I say lets use them and tell the NIH, what, if they could build the perfect study what would be in it? What positive test results have you had that you would them to be sure to check out? What research areas are you interested in that you’re concerned they might be missing? What people would you want them to consult with? What about ME/CFS would you want them to realize that they might not know right now? Remember, except for Dr. Lipkin none of these researchers have studied ME/CFS.
After a couple of days, I’ll collate the results and send them into the prinicipal investigator, Dr. Nath, and to Dr. Koroshetz.
Here are the tests from the draft (incomplete) study protocol:
- Two-day exercise test
- Autonomic Nervous System – sweating and breathing, being upright (apparently tilt table), blood pressure, and heart rate.
- Cortisol (presumably) – saliva test
- Heart monitoring
- Breath tests overnight – (small intestinal bacterial overgrowth?)
- Transcranial magnetic stimulation
- Functional MRI – the participants will do thinking AND exercise tasks in the MRI
- Spinal Tap
- Microbiome – gut, saliva and skin
- Blood Testing – specific ones not listed