CFS Research Study with Lumbar Punct - Upcoming CFS study with Dr. Baraniuk at Georgetown University

[jimells]

You could have antibodies acting a bit like anaesthetics - just detuning all your brain signalling so that you would feel a bit like having a dreadful hangover - or maybe still being drunk. Autonomic control could go out of the window.

This is how I feel every morning when I wake up. With a heap of POTS on top just for good measure...

 

[jimells]

It is all very complicated. Which is another way of saying I haven't a clue but the answer might turn up any time.

Haha, I love your honesty. Thank you for making my day.

 

[Anne]

They do a submaximal CPET at 70% of your age adjusted maximum heart rate, so (220 - age) * 0.7.

Sorry @Valentijn and @Sidereal, he stated that even healthy people do worse on a 2-day maximal CPET. I've edited my post to correct this. Trust me I disagree with him as well.

How I wish the researchers who have an opportunity to study exercise in ME/CFS would do it properly!

It is clear from the research to date (the Snell/Stevens/van Ness and Keller papers) that a 2-day maximal test is needed for the ME/CFS specific abnormalities to show up. Why muddy the waters with sub-maximal tests (like Baraniuk) or 1-day tests (like CDC)? When you have ME/CFS patients and a CPET test going, why on earth not make sure to repeat the Snell/Stevens/van Ness and Keller protocol (and either confirm or refute their findings)?

Especially researchers getting the much sought-after NIH funding need to read up on the current knowledge and design trials very carefully, I think. We don't get many chances. Look at Fluge&Mella in Norway, they are so thorough and (in spite of being oncologists, not ME experts) so up-to-speed on current research. From my layperson perspective, they seem to be doing what everyone should be doing: using CCC, doing meticulous trial design, trying out current leads (such as the metabolic issues shown in the 2-day CPET maximal test, Stevens Protocol) in sub-studies. Isn't that the kind of research we need to get going everywhere?

- Frustrated! -

 

[perovyscus]

I am in this study. I am spending a great deal of money to participate.

I will be Facebook Live-ing my lumbar puncture, in case someone wants to watch a grown man or woman cry.

 

[Helen]

I am in this study. I am spending a great deal of money to participate.

I will be Facebook Live-ing my lumbar puncture, in case someone wants to watch a grown man or woman cry.

Thank you for participating. I have had three lumbar punctures and I didn´t cry , so you probably won´t either. I got local anesthesia, and I just felt the movements but no pain. I learnt that the thinnest, possible diametre of the needle is the most crucial not to cause headache. Best of luck!