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Myositis and mitochondrial myopathy are not the same. In mitochondrial myopathy (MM), CK is not always elevated, and many patients require multiple (!) biopsies before anything abnormal is found. I have close friends who went through this. As for ME/CFS: PEM might — or might not — explain...

I think you might have a biased view of how ME/CFS presents if you believe there is no "generalized weakness." Severe and very severe ME (not your average/standard account on here) patients almost always experience some form of persistent weakness. I'd also argue that "weakness" and other...

On a quite fundamental level it's impossible to 'really know' what's 'best to do' to solve a disease. Most people will (by necessity) reason by analogy and not from first principles and logic. People will say disease X gets so and so much funding hence looking at disease burden ME/CFS should...

Ask clinicians who've seen thousands of people with ME/CFS—they'll almost uniformly tell you that individuals with ADHD, autism spectrum traits, and hypermobility syndromes (whatever label you use) are notably overrepresented. Both, ADHD and hypermobility are also overrepresented in ASD. All of...

Hi @Jonathan Edwards, you have apparently been somewhat critical about the idea to use dara and/or cyclo in the past, what data/research/events made you change your mind? Thank you!

Thanks for elaborating on it and for making my question more precise. While I'm not certain it's an immunological phenomenon, I'm quite confident that the absence of fever in some people with ME is real. Real in the sense that it's not present when it should be (think appendicitis, sepsis...

I can't read the whole thread so forgive me if this has been asked before, @Jonathan Edwards. Can your hypothesis account for the large subgroup of patients who are highly susceptible to infectious diseases? (Many of these patients report that as their ME progressed over the years, they became...

'Neural inhibitory signals’ could be, at least in part, downstream of respiratory metabolic failure in neural tissue? Maybe somewhat related, hasn't increased brain lactate in people with ME been replicated?

Discussions of free will (intention, agency, etc are all abstractions of it) and determinism are not relevant to finding out what is causing ME/CFS. These are very interesting rabbit holes in a more general foundational sense, but complete distractions in terms of ME. In fact, most BPS...

Could you test severe ME patients using the same methodology, or are there any hindrances like pre-analytical stuff like handling and processing in time etc? Could you do sample acquisition in the home setting of severe patients? Thank you!

Maybe the answer for hypovolemia is insufficient total blood vessel capacity, ie not enough blood vessels with enough capacity to carry the expected volume.

They conclude it's 'inflammatory,' is it or not? If it is, surely, treating it early would be important? Thank you,

'Muscle fatigue' has been a defining feature of ME for at least 50 years. I am sometimes a bit perplexed how even very well educated people researching this condition seem to be unaware of this. Even MDs working with ME patients regularly sometimes seem to be oblivious to the fact. Newton's...

I can't be sure, but I doubt that it's different from what Arnoble's wife (?) describes, it's a very distinct sensation. Personally, I wouldn't necessarily describe it as aching or painful, it's quite difficult to describe, I could see how people end up describing it as aching. It might very...

What Arnoble is describing here is, to my knowledge, a phenomenon reported by a large number of patients. It might be worth taking note of it. It happens to me too—a 'burning spine,' most notably in the cervical region, has been described for a long time by many patients.

But isn't the (capillary) lymphatic uptake of proteins itself dependent, at least indirectly, on a properly functioning microvasculature? Also, wouldn't cells that aren't adequately taking up oxygen produce relatively fewer proteins? I guess, I am trying to understand how GDF15 is normal in...

Another group is showing that GDF15 is normal in ME/CFS, @Jonathan Edwards. The testing I was part of showed that the most severe patients had the lowest GDF15. Explaining how this could be would go a long way, in my opinion. I still think it's plausible that, due to poor microvascular...

I just posted an abstract showing that half of all ME/CFS patients can’t walk a straight line without losing their equilibrium. Is that not a neurophysiological finding? I was one of those patients before I lost the ability to walk and even sit. I have/show many other abnormalities. I think you...

"No abnormal neurophysiological findings" I'm not sure that's correct. The fact that neurophysiological findings or symptoms aren't part of the diagnostic criteria doesn't mean they don't exist. And there would be much more to report than these findings, if my neurophysiological abnormalities...

This paper is interesting also in the sense that it is a recommendation/invitation to pharma scouts to at very least sponsor some daratumab. It's much easier for pharma to do this with a paper like this one out. Fwiw, I was part of a private investigation testing GDF15 levels in a small group...