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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 view on PEM and exertion and it's very interesting. I wonder if it's worth starting a separate thread for the many brains of S4ME to focus on it, if...

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 even visit it to drink in the ethos - and roll it out in their local hospitals.

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 cruel, stupid and awful practice. Patients are dying. Is there really no one in the NHS who has the knowledge and skill to set up an exemplar unit that...

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 BPS crowd have glommed onto a really ugly unexamined assumption that's pervasive in our society, and I wonder whether this has been why so many...

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 'stretcher on wheels' thing all the way. I was really shocked by how bad the suspension was in the ambulance - it was far less smooth than lying down in 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 this an area where PwME are likely to have any capacity to very gradually train ourselves up out of it? I seem to remember a research trial of...

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 of people here on the forum, and to ask them to note through the day, hour by hour, whether they have had to lie down. The poll options would list...

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 much I drank, accompanied by much worse OI. (Not diabetes - had a fingerprick blood test just in case I'd suddenly acquired it). I was wondering what...

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 about some new research showing the uselessness of salt for OI. From reading about OI on the forum, I'm wondering if anything is actually solidly known...

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 testimony of the personal cost of this horrible disease.

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 treated? On the grounds that they're the ones now trying hardest?

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 there viable long-term alternatives? I did a quick search on PEG tubes and the first result was a paper that suggested that most 'elderly' (people over...

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 health market (e.g. vegan, training, etc.) rather than to the customer's spec. I need to be able to say, 'Roast some asparagus, cauliflower and sweet...

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 reason. I don't want a carer in because I'm still trying to shield from Covid, and because it would be expensive. Are there companies that cook to your...

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 issues recorded?