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I am 100% certain that I lose water during PEM. I am bedridden, my caregivers measure every single ml of input and output. They have been doing it for years, so we know it is absolutely certain. I have 1500 pages of documentation to back that up. most of the loss of water/volume loss happens...

They all had an insufficient workup during the acute and sub-acute stage of their disease/trigger event, making it close to impossible to hunt down the actual pathology. ME/CFS being diagnosed after 6 months, and people only going through what is currently the standard medical diagnostic...

Thank you again, Chris. Your hypothesis seems to indicate that mitochondria are not functioning correctly, the obvious go to organelle, do you think we are dealing with damaged mitochondria or dysfunctional mitochondria, in the sense that mitochondria are actually not damaged but e.g. aberrant...

Thank you! When you say full system level, what do you mean by that? Every cell is affected? Can you give us a little preview of what data will come out when? Do you think there is direct or indirect evidence of tissue damage in ME/CFS?

That's basially what is causing ME/CFS, but somehow everybody still talks about 'no neurological' damage all the time.

There should be, very roughly of course, thousands of families worldwide with more than $50 MIO at their hands who have a close family member with ME/CFS or are themselves affected. Also, this not just an issue of wealthy and superwealthy, while many ME/CFS patients are in precarious...

U Understood, thank you. If you see a realistic chance to include a small PEM pilot cohort, and if it’s just 5-10 samples, and if you think it’s a good idea, I might be able to help you with funding for it. In such a scenario, please reach out via DM and let me know what you think (a good...

Thank you for your insights, @chillier ! Have you considered using PEM samples for your projects and to compare them? I can not really say a lot about it, but I have funded some proteomics work (with a very small sample size; results remain unpublished so far) in the past, and the conclusion...

If Tronstadt helps them with methodology, is this attempt of replication an 'independent' replication? All in all, this still looks like a sound approach. I also like that the researchers have the right kind of skin in the game.

Hey! How have you been doing? Are you still on Levamisole? Thank you!

While I appreciate the creator of this thread very much for his insights and intelligence, I think this won't work. What might have a chance of giving us a better grip on the situation in terms of 'what is this', besides GWAS, is large scale, 'multi-generational' epidemiology. Such work...

I am not sure in which way he meant it, but, I agree with it universally: to assert that advocates are not doing a good enough job, including patient advocates, is not victim blaming, it's a realistic look at what is happening and at what needs to change, despite or because of patients' physical...

SolveME should have changed its name years ago, it's highly questionable what they are doing from an ME perspective, it has morphed into some "do it all, do nothing" kind of event. Imagine a charity calling itself SolveParkinson's that seemingly wants to solve all but Parkinson's, that's not...

If you equate what you are doing personally with what US advocacy is doing as a whole, that is your problem, not mine. ME/CFS in comparison to LC, has at least 10X the amount of paid professionals on the floor, if you see no problem there - measured on outcomes - then I am not surprised about...

Whatever 'you' are trying is seemingly insufficient. US advocacy is measured on outcome not on 'trying hard.' There are many people being paid for what they are doing in US advocacy, they are not patients, and they receive a salary, and I paid for them with donations. It's irrelevant for me if...

I think the significance of the proposed bill for ME/CFS may be widely underestimated: • Without direct involvement, ME/CFS patients risk being overlooked AGAIN if the bill is passed, potentially impacting institutional support for ME/CFS in the US significantly and maybe for decades to...

Seems like it. Haven't seen/heard of many pwME with these issues. How long have you been sick? How old are you? Thank you!

Same for me, I am very severe, and for me the readings are lower, often lower than 90, etc. But the general pattern is the same.

Who would you study this further? In humans? In humans with ME/CFS? How would you go about it as someone who funds ME research? Thank you!

The low catechol levels were measured in the CSF, is that correct? Let's assume low catechol levels are a real signal, the authors seem to indicate they might be, wouldn't it be a bit odd not to specifically mention that despite low central catechols the patients suffered from sympathetic...