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Speaking as someone that experiences inflammatory fatigue, its utterly bizarre that anyone informed could think its remotely comparable, or influenced by, fatigue experienced from a lack of exercise. For me inflammatory fatigue is like an episode of PEM turned up to 11, all at once and out of...

Mitochondrial Myopathy :)

For a patient perspective: I had a muscle biopsy taken in an NHS neuromuscular disease clinic. I believe the main indications were my very high resting blood lactate and some moderately wonky CPET results. Long history of non-specific symptoms that appear to overlap with CFS/POTS/MM, for what...

I've also seen comparisons made to other known coronaviruses that, despite not mutating very much at all, appear to reinfect people every few years, causing common colds. Have no idea on the accuracy or relevance of those statements though.

Hi @MerryB, The paper just released and discussed below is probably a good start for explaining what might be happening here: https://www.s4me.info/threads/peripheral-endothelial-dysfunction-in-myalgic-encephalomyelitis-chronic-fatigue-syndrome-2020-scherbakov-et-al.13992/ Ryan

Not wanting to rain on any Apple fan's parade, but in case its useful to someone you can get this stuff inc SpO2 monitoring in the £30 Huawei Honor Band 5 :) Ryan

Hi @MerryB, I haven't tried Midodrine but can at least say I have had the same, very reliable 'viral like' response as part of PEM. I've been on Pyridostigmine for 6 months now and very clearly get less affected by PEM and consequently less of the viral activation feeling. Whilst they're...

Ah, my mistake, I read that paper again and see the author (Systrom was just a contributor) used the term mito myopathy to describe both primary and secondary mito issues. Personally I think it makes more sense to label mito issues that are only secondary as dysfunction, rather than a disease...

I haven't read that study for a while but i'm not sure if he went so far as to say there's definite mito disease in these patients. I suspect its more mito dysfunction (which can be secondary to a number of other problems). Good luck with the Midodrine :thumbup:

Thanks for sharing that @MerryB. I would push for review at a Myopathy clinic, just in case. The approach at the NHS clinic I went to was a consultation and some blood tests, which led to a muscle biopsy. The biopsy didn't show any significant changes so it wasn't taken any further. If it had...

An anecdote that's sort of on-topic that people might find thought provoking: On holiday a few years back I woke up feeling awful, in a pool of sweat, hyperventilating (rapid breathing this time). It was notable for me because despite feeling relaxed, my breathing did not return to normal...

Another way to look at that could be the low volume is compensatory to hypocapnia, correcting prior hyperventilation.

Its definitely not the case that 100% of POTS patients hyperventilate, its just a contributing factor in some cases (as with practically all POTS patients there are different but overlapping contributing factors). You could also argue that if you were not standing much either before or during...

To give a clear example of how hyperventilation doesn't necessarily imply psychological cause: patients with mitochondrial myopathy hyperventilate as a response to the lactic acidosis they experience after exertion.

Hi @duncan, It was my experience that I did not know I was hyperventilating. Hyperventilation does not require you to be breathing in a fast, panicked manner as the layperson understands it. I was shown to be breathing very calmly, slower than average in fact, just excessively deeply (during...

Hi @lunarainbows, Upon standing its normal for your blood distribution to shift, as its pulled downwards by gravity. In a healthy person mechanisms kick in to correct this change and bring blood pressure and flow rates back to (near) normal and keep your blood where its supposed to be. Central...

Those researchers may not have been wrong, hyperventilation does often occur and respiratory physios can be quite useful in correcting disordered breathing. Its a very common finding in POTS patients and learning to fight your broken respiratory drive can limit symptoms and give you more time on...

Commonly held view is that orthostasis results in central hypovolemia, particularly if there's neuropathic factors contributing to that. Knock-on effects lead to respiratory activation. Various other reasons for hypocapnia are possible, hyperventilation features in mito disease and other...

There's prior research suggesting it can't be blamed solely on hypocapnia. CBF disruption occurs first, the hypocapnia follows and reinforces it. You also don't get the same symptoms from voluntary hyperventilation. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4016155/

So the morning after it hit Brighton I attended graduation there, great timing. Not sure who was worse off, the VC that had to shake hundreds of student's hands, or me, on Adalimumab and consequently immunosuppressed... hide!