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2 day VO2 max? Consistently increased steps and general activity over time? I was stating my perception so I’m not sure how you can know the opposite is the case! I take on board that some people are feeling uncomfortable both ways though.

I think this would be interesting to do Ron’s test even though there’s not a direct before comparison. It would be curious if you still show a response without symptoms (IIRC so far people with mild ME still show the same effect). If people in remission also show a response it might be that...

From Wikipedia

I don’t think this explains your one sided weakness but as an aside re dopamine, trawling through my whole genome I’m homozygous for a pathogenic mutation of this which seems like it’s worth pwme being aware of as it could perhaps be misdiagnosed as a EDS/POTS (or NMH)/ME combo...

@Jenny you sound quite similar to me. I’ve been 95% well before too, not entirely symptom free but able to lead a normal lifestyle. My steps down are triggered by viruses, though it’s unpredictable which ones will trigger bad relapses. A fairly mild tonsillitis did it in 2012.

I got the impression with @Jenny she knew what was going on and wanted to document before the virus that there was brief remission? It sounds less convincing if you say after the fact that you only feel better just before a new virus. I get this too and would appreciate a DM if anyone gets...

When I have weakness or paralysis it’s symmetrical. It can be localised, but it would be both legs or both arms. Things people mentioned to me though included hemiplegic migraine. That doesn’t fit my experience but could it be relevant for you @JaimeS ?

Kirke 2017 was what I was going to suggest Karen! A graph from your paper is often what we use for #MEAction stuff.

Yes reassuring because rituximab could have been instantly dropped without understanding the discrepancy between results.

Also previously discussed here (or the other place) most (all?) of us who’ve had genetic testing seem to have a tendency to fast twitch rather than slow twitch muscle fibres - good for sprinting but not marathons. Are we experiencing an extreme downside to this...

Firstly a personal anecdote is my PE teacher had one of these devices, I was the strongest in my class on this HGS test (pre ME). It was useful for me because I’m not aggressive in my personality but the tougher girls saw my HGS score and were “oh we better treat you with more respect!” :rofl...

Supradyn is mentioned specifically as well as other general things. I wonder why? It’s from this study https://www.medscimonit.com/download/getFreePdf/l/EN Did those researchers gain anything from trialling a specific multivitamin?

I’ve not heard of a large undiagnosed Parkinson’s subgroup in ME. Is this nonsense? The reference is in Russian (which doesn’t mean it’s nonsense, but it does mean I can’t read the original).

It looks like an interesting book, available on Amazon for £8.99

Peter White said about not doing tilt table test, though gave the reason it was too demanding for us...

BPS is a way of seeing health/illness/disability. It is a general model. So as a comparison you have the Social Model of Disability and the Medical Model of Disability. People who agree with the Social Model see all Disability through that lens, which is about a lot of the difficulties disabled...

I’ve written a blog post about my attempt to understand https://tipsforme.wordpress.com/2018/10/13/understanding-the-ido-metabolic-trap-hypothesis

@Trish so how does Rule 5 fit with a thread like this? I wouldn’t interpret sharing experiences of supplements as medical advice (because anyone can buy supplements, we’re not suggesting diagnoses and Squeezy has asked for our opinions). I read it that some people are saying we shouldn’t be...

It is slightly puzzling but Psychology can be more like hard science than people expect. Eg neuro lectures can be difficult, you learn the anatomy and function of different parts of the brain and some general neurology. I’ve forgotten most of this content but I do remember it being very sciency...

@Invisible Woman I’ve had my whole genome sequenced and it looks like I’ve been dealt a bad hand genetically in terms of tendency to not absorb several vitamins. I have potential difficulty with 7 vitamins and 85%+ population have greater genetic ability to absorb 5 vitamins than me. And eg for...