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You're not alone, I see a significant reduction in PEM severity and recovery time when eating very low carb. Another nice bonus on top of having consistent energy through the day :) More objectively my repeat CPET results improved quite a bit too, with VO2max increasing by about 25% :)

This advice serves most people well but as @Keela Too mentions, it is sometimes not appropriate depending on the cause of the hypo. My experience was much like this, to begin with the hypo symptoms were mild and only induced after lots of sugar or a meal unbalanced towards carbs - probably just...

I had similar sort of tinnitus symptom before I went very low carb high fat, I had assumed it was blood glucose related too. Normal hearing would fade out to be replaced by a ringing that would ramp up in intensity and pitch before ending suddenly, followed by normal hearing fading back in. Odd...

This was basically the response I had from a doctor when I brought it up, awareness seems limited to very significant congenital disorders. The doctor told me they weren't aware of anyone in the UK that investigated mito disease in adults. By chance I was later referred to a neuromuscular...

This happened to me also, the myologist was very much on the fence over the need for a muscle biopsy. Luckily I returned a rather high blood lactate test so that forced her hand. She readily acknowledged that mild Mito diseases can cause the sort of symptoms we experience, so perhaps the...

I agree it seems implausible to not suspect Mito disease based on symptoms but all the reports so far suggest Mito disease is just as rare in CFS patients as anyone else. The topic came up in this conference and the speaker reminded us of a study (by Hanson or Hornig I think?), that tested 200...

Its kind of you to ask, thank you. I will PM with more detail if you're interested? But as it's sort of related to my point above, in brief I've gathered a number of more specific but almost as poorly understood diagnoses. Of course, if I ask each of the specialists in those fields about CFS...

This doesn't surprise me at all now after spending the last 3 years actively pursuing more accurate diagnosis, subsequent to 20 years of a useless CFS label. The differential diagnosis challenge is staggering, there are so many overlooked conditions because not everyone presents in the...

It is important to test both as different bacteria produce different gases. Whether the substrate is glucose or lactulose can be important too, it appears glucose will only detect proximal overgrowth - your gut will absorb glucose so if the bacteria is at the end of the small intestine it...

My honest feeling, and I hope you don't take it the wrong way, is that you'd be wasting money on investigations without having professional guidance alongside. There are so many tests to choose from and so many nuances in interpretation that it would be like finding a needle in a haystack. And...

Hi @Arnie Pye, GI health is an incredibly complicated thing to try and understand yourself - I know you say you don't want to involve the medical profession but does this extend to a nutritionist or functional medicine practitioner? These guys generally have a more open mind and would be better...

Sorry, @NelliePledge, I don't recall if he discussed the lymphatic system. He certainly felt that poor sleep, evidenced by parasympathetic withdrawal, was contributing to overall problems though. I assume this is the publication that he was basing the talk on...

Baraniuk's talk was entertaining and thorough, though not particularly remarkable. I thought it illustrated quite clearly the failure of the NIH approach in only granting funds to those presenting hypotheses, because to me it appeared like 5 or 6 random statements he threw against the wall in...

I came away with more the opposite feeling, that it is a gargantuan task and we're still at the starting line. Something that always confused me was the lack of other disease group inclusion when testing his biomarker diagnostic inventions, how are we to know if they're specific for ME/CFS? But...

If you found the sleep study presentation interesting you might also enjoy this: Its focus is on sleep abnormality in POTS patients but I have no doubt there will be crossover. It is at a lower level with more data and discussion. There was also a video somewhere but I can't find it now :(

I enjoyed the first half of this lecture on sleep abnormality and gylmphatic drainage. Unfortunately he then went off on a tangent, digging up some ancient psych theories about personality types - it seemed analogous to the Type A personality stuff we've heard over and over before. According...

His lecture left me feeling like I'd been on a rollercoaster, it was rushed but an otherwise well rehearsed summary & evolution of 20+ years work. I had little awareness of his research, having focused a lot more on the clinical allergy side of MCAS from Afrin and others previously. It was...

Just to expand on the good summary from @BurnA, Ron suggested 2x theories on the similarities: 1 - We might have undetected trypanosome type infection causing our symptoms 2 - Existing recognised trypanosome infection is actually just causing ME/CFS too But this was all just conjecture and...

Depressingly I remember seeing a graphic showing that male pattern baldness already gets orders of magnitude more funding than ME/CFS....sigh.

Hi @Robert 1973, My NHS GP prescribed me sodium cromoglicate on the written advice of a MCAS/Masto specialising Dermatologist that I saw privately. I understand from other MCAS groups that this can be variable depending on your GP & the local NHS rules. Cheers, Ryan