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I always go on about this, but I thing the fatigue/tired/pacing “do 50% less” energy envelope type of language makes it easy for a non-ME person to start from their own viewpoint. They imagine themselves as tired/doing pacing etc. They need to start from a point of pain and inability, not “what...

It’s not “enough” of an explanation but it’s a start if you’re discussing with a generic non-ME type who thinks you can “just try” a bit of x y z. How much of their day can they achieve spending most of it lying down in silence? They take for granted being sat up or standing, let alone seeing...

Responding to a deleted post If I’m not lying down in silence, I’m exerting.

Yes - we don’t have any agency, it’s not us doing something wrong, it’s our only option to survive!

I do think it’ might belong to Schrödinger, as you don’t know for sure what is in this envelope until you open it. The energy only exists as an unknown until you access it :)

Are we all behind changing boom-bust to something else? I think it’s been slowly changing to push-crash. I think it’s been discussed a lot. Boom and bust is business language and it’s implying good times and fast living followed by destitution. It also has an air of hubris.

Not sure, not many details apart from her name was Sharon and it was also on Facebook. Another “TPN is too dangerous” situation.

I know none of the pip stuff makes sense, but in theory I can lose my 2s on ADL’s but still have my mobility? So you can only walk 1-20m but you’re fine walking about your home having a shower and putting clothes on to do your cooking?

Do these Drs realise that they’re exposing their own somewhat basic personal take on something they don’t even understand? Clearly not. This type of behaviour says a lot about them, more than it says about patients.

For posterity - screen grab

I think they mine it in London and it costs a lot to post it:rofl:

Yeah that’s the usual fix in these situations. I’m already reeling from the cost difference up north. In London my water was discounted and my council tax discount was 100%. Up here I have no water discount, electric is more expensive per unit (I have no idea why, it’s very windy, they need a...

Urgh I just read the thread, there were a lot of people saying “ well yes because you only have that if your gut is beyond saving…” it’s amazing how many people seem to think the very real proven outcome of “death” is fine when balanced against using a last-chance measure like TPN. You’d think...

Yeah…it’s nothing to do with immigration it’s just a system with a “squeezed middle” as most systems develop over time.

So why do people who are immigrants get it? They’re just the same as people who didn’t have enough credits/years paid in? I’m really confused. I worked offshore for some years and made sure I had enough years paid in. If I settled here from abroad as an adult immigrant then I wouldn’t have...

So people who don’t have enough NI years get pension credit?

Neurologist practicing in the NHS! Eek. https://www.uclh.nhs.uk/our-services/find-consultant/dr-suzanne-osullivan

I don’t understand why a recent immigrant gets a pension credit top up equivalent to PIP with associated passported benefits?

I feel like there’s a meme for this? You keep using that word. I do not think it means what you think it means! A film quote which shows a deeper understanding and insight than the good Dr. The Princess Bride

Not a fan of the logo or colours, however having experience in charities I can imagine it ticks a lot of boxes. I am personally creating a fantasy in my mind, entirely made up, that they want to get their house in order pending a big reveal by Decode ME later this year….I can dream