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that is exactly how I experience ME. Like someone flips a switch in my brain which just brings the entire system to a grinding, & often quite abrupt, halt. Power failure across the entire grid, from making one's limbs/fingers go where I ask them to, to executive function, to making speech come...

Wow took the words out of my mouth Which, I assume is why driving for long periods is utterly physically as well as mentally exhausting, despite being sitting comfortably the whole time.

This is a ll a very very good idea @Andy :) nice one Actually I think it would be good to see, especially when held up against the other 2 (mild & moderate) yes I have to agree 'over exerting' to 75%... 75%?! golly I don't know anyone who's moderate who could exert to 75% of 'normal/healthy'...

Crikey this is great news... if they get the selection right. I really hope they will screen for people who's sensory processing issues make them ill or cause PEM, as opposed to people who are 'sensitive' to, for example, noise/crowds/overload because it upsets them or makes them feel anxious...

Another one who seems to have no proper understanding of the condition he is an 'expert' in. Sensory sensitivity in ME has nothing whatever to do with SNS activation. At least not in whatever is wrong with me. The reason i am so certain of this is that i have had PTSD. I am intimately acquainted...

hahaha brilliant :D

:rofl: oh that's priceless, very very good you pair need to be on 'I'm sorry I haven't a clue' or something.

Also this https://www.sciencealert.com/scientists-discover-never-before-seen-vessels-in-the-brain It went by largely unnoticed, but finding that there are lymphatic vessels in the brain when all the text books say/said there aren't any, that's pretty big iyam, but of course MUS is still assumed...

:thumbup:

The word 'syndrome' doesn't necessarily mean unexplained/not understood, it just means a collection of signs/symptoms that appear together. Eg Down Syndrome, Anderson Syndrome, Toxic Shock Syndrome - all with well understood aetiology/pathogenesis. ETA - I do agree with your point though, and...

from the above link/testimonial.. really? whats the evidence for that I wonder? That was said with part sarcasm & part genuinely wanting to know if there were any evidence showing that.

I agree the patient.info site seems to be pretty good, that is the 'for professionals' page at least, it aint perfect but crumbs it's the best mainstream thing I've seen in yrs. The non professional page persists in going on about 'tiredness'.... ugh! but otherwise it's not bad.

wow, that was quite a good article! What a pleasant surprise. this bit made me laugh... I mean if only! right? I think she meant brushing your teeth or turning over in bed, rather than walking to the shops, I'd love to walk to the shops, they really have got no concept of how severe it gets do...

Wow, Neil, have you been drinking the Kool Aid? :eek: Who's 'not trying'? I don't know anyone with ME who isn't massively trying, all the time every day. This is such BPS codswallop 'they need encouraging to try harder, they just think they cant do things. they could if they tried'. When I...

for a start, I would have thought that not drinking for24-48hrs in a very hot country like an African one, where you are sweating profusely, can kill you quite easily & quickly, particularly if you were not well hydrated prior to refusing water. It was their behaviour that killed them not their...

Oh God that made me laugh, it really did. I saw it all in my mind like the monty python dead parrot sketch :laugh...

Yeah I agree.... I only asked because I had frozen shoulder a few yrs ago & osteopath told me cold only as heat wouldn't help the inflammation... but I hated the cold it made me tense up which made it worse so I never put anything on it.

oh yes sorry lol it's cos you mentioned knickers shaped like shoulders & that made me laugh so I got confused haha my poor brain :rofl:

@Amw66 this is a brilliant invention I hope it become widely available soon. @Trish I was told cold was needed for my frozen shoulder not heat?