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We don’t know so much. But the fact that even in my darkest and worse spots I know that at some point, if given the right conditions and support, I will have a better day is what I hold on to. And shows that things may not be working at that point but aren’t permanently broken. To a healthy...

You’ve explained it well :) Certainly to those familiar with this.

I like a lot of this and it describes the wall I kept hitting when first ill but still able to get around. Now severely affected I do much less. But this idea of hitting walls and of things being about stamina is really important and well put. And I like the final comment, even when feeling a...

A few disjointed comments - I drank plenty before ME, sometimes probably far too much and far too often, other times normally but tolerance was high. It was only with ME that changed rapidly. - I do get nauseous with my ME and various symptoms would indicate a physical response to the body not...

Good find. It’s worth looking at the full results pdf as there’s a lot of detail in there beyond the headline numbers they gave. https://meassociation.org.uk/wp-content/uploads/Survey-Alcohol-Intolerance.pdf

I’m not sure if poisoned works for me although the quantities were small, certainly compared to what I drank pre-ME. From what I remember it was perhaps like all the bad bits of drinking without any of the good bits? The idea of something not being broken down or processed in the way it did...

It’s up on the website! https://www.qeios.com/read/NXCXM1

You used to be able to do this with search engines quite well (for public mosts at least) but they seem to have all gone downhill https://duckduckgo.com/?t=h_&q=site%3Ahttps%3A%2F%2Fwww.s4me.info%2F+poisoned&ia=web The forum’s built in search can possibly be used/scraped...

That could be a good way of putting it. Maybe what I experienced was not worsening of ME symptoms but an instant hangover, which I guess could itself (like so many things do) make ME symptoms worse? I just bundle everything that didn’t happen to me pre ME as an ME symptom. It’s been probably...

I was initially so ill I wasn’t drinking. Then picked up and tried some beer and a couple of times a whisky and it just wasn’t enjoyable any more, very different to pre ME. Made be feel off quite quickly, although difficult to describe exactly how, sort of woozy and not at all right. None of the...

Thanks to the committee here for signing and to @Karen Hargrave and co for the letter. It’s worth a shot at least.

I’ve listened to the latest version. Thank you again @Jonathan Edwards This is good, very honest and clear on what we don’t know. It covers a lot, but is also stripped back to focus on a few important areas. Let’s hope it is seen by the right people and has the desired effect. Not...

Fwiw I often use the phrase ‘unpleasant symptoms’ and prefer it to just ‘symptoms’. I think I get what is meant by ‘organising’ thoughts and it’s probably close enough but maybe there’s a better word… although I can’t find it at the moment!

Yes, there’s a real mix of ethics and useful test design isn’t there? Sorry I’m going to use myself as an example again, but perhaps a less extreme version. I know walking up a flight of stairs will trigger problems. I haven’t done it for a long time but have had to or by choice numerous...

But what we do know is we all have triggers that cause moderate to significant setbacks/crashes. I’d really like to find a way of doing before/afters of these. But I wonder about ethical approval even here? For instance I know I will have a significant reaction to and have repeated the...

Any formatting/layout problems with the pdf are my fault and probably best ignored. I just did a quick print to pdf from my iPad to share.

I’ve had long periods where it feels like my body is shutting down. But again it’s one of those things medical professionals don’t respond well to hearing. There’s probably a whole language of these terms we have been taught not to use by negative reinforcement.

PDF for those who need it

Maybe the question could be more bluntly stated, something like: do any of these medications not work for you at all for any pain?

It depends, I use paracetamol and ibuprofen for different sorts of pain… One works better than the other in some circumstances. Would this sort of mixed usage mean a no in the context of this survey?