I now fully intend to have 'Wedged between two piles of nonsense' chiselled onto my headstone but meanwhile, I hadn't realised that this was your...
I agree, but what I'm suggesting is an exemplar unit, with the aim of demonstrating best practice so that other doctors could be shown it - maybe...
There's been so much over the past few weeks about the horror show that is the NHS's approach to severely ill PwME. We've heard about a lot of...
FWIW, as a non-medic, I don't agree. I think it simply means a framework by which we understand things. Ideas don't only refer to imaginary things.
In this, George Monbiot said (I tried to clean up the YouTube autotranscript so this might not be perfect): I think this is a problem, that the...
I was taken on a 120-mile trip by ambulance to a distant hospital to have my OI investigated in a specialist department. I lay down on the...
From another thread: Our problem is that our symptoms force us to lie down a lot but I can see the vicious circle. Unlike physical exertion, is...
Because of @Jonathan Edwards 's interest in this, I had thought about maybe trying to set up a high-profile poll thread to catch the eyes of lots...
This is interesting. I wonder if anyone is looking into it. Do you have a general sense of the field and whether it's making progress?
I just had the exact same thing. I've been unwell with what might be some virus and had three days of constant dry-mouthed thirst, no matter how...
We've had a very population thread about needing to lie flat, started by @Jonathan Edwards, and @Mij has just started a very interesting thread...
Could/should we do a response from S4ME? Could this be a useful pressure point?
This is superb - huge thanks to @Chris Ponting for his deep care for, and understanding of patients, and to our brave @Simon M for his powerful...
Thanks for posting that Times article and the nonpaywalled link. Do we now think that that might be the safest hospital for severe PwME to be...
If someone can't sit up or tolerate a gastric tube via the mouth or nose (which I understand, maybe incorrectly, was the case with Maeve), are...
Unfortunately my diet needs to be completely bespoke - it's way beyond what most people would consider a special diet.
Yikes, would it be a private chef?
Thanks, that was a good suggestion but having put it in, it seems to be a lot of companies offering home delivery of ready meals aimed at the...
I'm finding food prep a struggle because I have to do it from scratch, due to multiple food sensitivities. I can't buy ready meals for that...
This is incredible. I've desperately needed this for decades and I've never heard of it. Has any PwME here heard of it and managed to get their...
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