Simon
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My #MEAction blog on the many good points of the planned NIH ME/CFS study
Extraordinary NIH ME/CFS study may be most comprehensive and in-depth ever | #MEAction
There are still concerns, but also some deeply impressive science that could make a big difference to patients.
Brief version
Extraordinary NIH ME/CFS study may be most comprehensive and in-depth ever | #MEAction
There are still concerns, but also some deeply impressive science that could make a big difference to patients.
Brief version
Blink and you’d missed it. In just six minutes and six slides, Dr Avindra Nath unveiled one of the most in-depth, comprehensive and innovative ME/CFS studies ever proposed: it’s the first fruit of Director Dr Francis Collins’s ‘new start’ for ME/CFS at the US National Institutes of Health (NIH). There wasn’t a lot of detail, but even from the preliminary information that’s available it’s clear that we’re looking at a very impressive project.
Since it was first announced, concerns about the study—including the selection criteria, the choice of control groups and the views of some of the researchers on the team—have dominated discussion in the ME/CFS community...
...But looking closely at what we know so far about what the NIH is planning, it’s clear that it’s applying some extraordinary science to the problem of ME/CFS,
...Study highlights
- The study will take an astonishingly in-depth look at the immune system, both via the blood and spinal fluid. On the basis of the initial findings, the NIH will decide where to target even more sophisticated tests.
- The researchers will use a wide range of measures: thinking tests, metabolic tests that even measure how much energy patients burn as they sleep, autonomic function tests, and self-reported fatigue alongside activity measurement.
- Best of all, the study will look at how most of these measures are changed by exercise, focusing on the core feature of ME/CFS.
- And they will use two types of technology to probe what happens in the brain when patients are hit by exercise.
- The most ambitious part of the study will use cutting-edge technology to try to reproduce in the laboratory the clinical or biological abnormalities seen in patients. It could dramatically speed up understanding of the illness and the development of treatments.
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