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This video seems to be a pretty good summary of the literature already out there. These are the kind of result the NIH should have tested in their study. It also seems like the controls in a majority of these studies had far lower orthostatic symptom burden than the NIH found.

This all begs the question: what should we ask the NIH to follow up on? And if there is nothing in the paper that warrants follow up study, what is the next thing they should focus on to find clues?

Thanks for taking the time to respond EndME. I think your points are very reasonable and help clarify the issue for me. As always so many questions have yet to be answered. In this case, I would not be surprised if the only reason the tilt table is used for "POTS" is because it is an abnormality...

I am genuinely curious why is a control group useful in such a study? To me it seems like the purpose of this paper was to figure out what percentage of pwME also meet the criteria for POTS. If a number of controls had a positive tilt table test all that seems to say is that those people would...

That seems to be correct. They don't tell us what % of people had excessive orthostatic tachycardia at 40 minuets, and don't even specifically tell us what they mean by excessive orthostatic tachycardia. Its not clear what the heart rate response was as there are no references to heart rate at...

If someone naturally has to do things to prevent themselves from fainting in everyday life, I would argue they should not be a control in a ME/CFS or POTS study. Perhaps it is a function of my youth, but I have met very few people in the general population (far less than the 40% here) who have...

Interesting, I assumed that a healthy person couldn't have such an increase in heart rate. It is also possible that these aren't false positives but instead these people really do have orthostatic problems that they aren't particularly aware of or have less severe symptoms. Either way, it seems...

This seemed bizarre to me so I decided to do some digging. They don't include any of the tilt table data in the Supplementary Data and except in file #22 where they list it as a negative finding. However in a short section on page 49 of the supplementary data they add They list this paper...

What do you mean by finding any differences? What are you comparing between the people did 1 CPET vs 2? The people who did the 1 day would still have PEM you just wouldn't pick it up on the 2nd CPET assuming a difference really does occur.

Its not quite that, its more like we aren't going to try and objectively measure PEM (for the reasons given) but instead going to measure lots of things to see if we can find something that could be causing PEM. Of course they failed to make any real progress towards that goal. Because they...

Upon further reflection, I think my biggest gripe with the paper (besides the small sample size and BPS influences) is it took so long to come out that much of what was done seems outdated now. The CPET work is outdated by Systrom's invasive CPET test and many of the two day CPET's that have...

This may be an unpopular opinion but I understand why they used a 1-day CPET. It makes sense that by taking measurements when PEM is induced on the 2nd day, they were trying to find the cause of the lower 2nd day CPET results, not validate them. I think it is relatively well known that the 2nd...

Um isn't that like 4 times the legal limit for driving?

Wow 15 months for the paper to be published seems crazy.

I have been trying to figure out how DCE-MRI works and what is shows regarding BBB disfunction. They inject a contrast agent, in this case gadobenate dimeglumine, which can pass through vascular endothelium into the extracellular spaces of most tissues. However, in the brain the BBB prevents...

The vast majority of the people were not picked because they had an onset greater than 5 years ago, had no record of infection or had other diagnoses. I don't think they weren't picked because of CCC criteria. 9 of the study participants fulfilled the CCC and for those that did not, 3 were...

Its not so much that my brain is somehow preventing me from pushing through. I can push through but I understand that comes at a cost. I generally don't push through just because the costs exceed the benefits. When I was a rower I pushed through all the time because the costs weren't very high...

This difference in performance correlated with decreased activity of the right temporal-parietal junction, a part of the brain that is focused on determining “mismatch” between willed action and resultant movement. Mismatch relates to the degree of agency, the sense of control of the movement...

Some other information on recruitment that I found in Supplementary Data 2. There were 484 people that applied for the study. Of those, 137 were found to have other diagnosis during the initial screening. Not too sure while you'd apply for a ME/CFS study if you knew you had an autoimmune...

Does anyone have any thoughts on why none of the participants had pots? Is this a selection problem or are pots and ME just unrelated?? I really don't know what to make of this