Anyone have any idea what happens when ability “poops out”.
a gentle return to baseline?, permanent worsening? Temporary withdrawal?
ivd seen more good reports on social media on this drug than any other over the past 20 years so I got curious
If the NIH study accomplishes nothing else you would think it would be looking at this kind of stuff and hopefully clarify research that was never followed up on. I don't know if that was the case here.
I'd take a skeptical eye at that prevalence. Even if I'm on the more severe end, I just find it very unlikely that 1.5% of the population have what I have. Like implausible. MS is .21%.
Almost everyone I've been told about who "has that [me/cfs]" doesn't have it, has something else, or recovers...
This could be pretty important. Instinctively it seems that could be relevant to disability benefits. I think the cognitive effects of me/cfs are largely skimmed over (who doesn't have brain fog?) when often patients describe them as severe.
Just skimmed through a 2013 paper that tested simple...
I'm going to hold on commentary until I can see the study itself. What I can say is that, I've always been frustrated by the 5 year limit given how long it takes
1) to get a diagnosis
2) to accept/confirm that diagnosis
3) it was widely said to me that patients recover 3-5 year periods (and...
I can see this happening. I do wonder if the negative findings from this study are even all that useful. With Rituximab, you have some pretty definite answers about b-cells (but I guess not all types). With LDN? Is it really the definitive anti-neuroinflammation drug? Is there definite...
I have mixed feelings. One the one hand, it could address the use of off-label drugs that we've been throwing around for decades. On the other, what does it say about progress in general that OMF is trialing drugs that have been around and unconvinced for decades? That they have to look...
That was very unassuring ironically. "In fairness, they are doing a bit". Doesn't explain at all why it's never talked about it. Ignores issues with the spending, ignores me/cfs (of course) but talks about it's a completely new issue (to some degree this is true). Fauci has hardly been a strong...
I don't think I know the BPS sense of it, probably for the best.
The Baraniuk study uses a very confusing and problematic definition of CFS.
There was also a CSF metabolomics that I was excited about, from Fiehn Columbia, which was never published. I could've sworn it was in one of Cornell or...
@B_V
Thanks for keeping us all up to date. It's appreciated.
Is this the publication from Nath you alluded to last month? Will it be the main/only publication from the intramural study?
I have trouble quoting the pdf, but it seems like the trial was open to being a little larger, but over half (17/29) of the patients who qualified rejected the opportunity due to severe fatigue and unwillingness to have the procedure.
There are couple ways to do this, via colonoscopy, pill or...
The 2019 thread of this pilot trial is here. The fact that this is still only being shown by one group in isolated NK cells is a bit frustrating. I'm not sure I buy NK cells are as important to me/cfs as I once did, I guess after a paper from Klimas showing their reduced functioning.
Also, I...
In doing a little reading, I found this extremely useful table from a me/cfs metabolomic review article from 2021. It contains a list of abnormal metabolite findings of various studies.
Table
Cortisone, 3-hydroxydecanoate were low in the first study in the table and so was Linoleoylcholine...
Unless I am mistaken they don't include the recent Hanson study in this review. That was a pre/post CPET study that found me/cfs patients changes were unexpectedly lower suggesting a blunted response to stressors . It may just have been too recent. They don't mention hypoxanthine outside of a...
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