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I do understand what you mean – it's quite hard to define, but I think I only experience fatigue when I have exhausted my energy. For instance, I've just been trying to move a heavy trough planter outside on a hot afternoon, and I'm tired as a result. When I've had a break, though, I'll be...

I don't know whether this is useful, but as it's at least short, I'll add it anyway: Would we be measuring fatigue, or energy? (I interpret fatigue as the absence of energy, coupled with pain.) The Chronic Illness Inclusion Project, which I think has now come to the end of its funding, has...

As an aside, it seems ingestion of sugar is problematic across a fairly wide spectrum of ME patients. Not necessarily because it causes GI symptoms (though it may), but because it tends to aggravate all ME symptoms. I've often wondered whether this is an important clue that should be...

I'm really hoping this is the final death knell for GET. I know it's not a NICE publication, but it's from an influential journal; it's quite hard to see how NICE could continue recommending exercise-based 'therapy' in the face of publications like this.

This is why it's so difficult, and needs several types of measurement. I only experience OI when standing, so I not only spend all of my waking time with my feet on the floor, but around 20% of my sleeping time too. I can sleep comfortably sitting up on the sofa with my head supported by a...

Think we're going to need a bit more than a nice smiling face and a vision statement, to be honest!

To be honest I'm not too worried about that aspect of balancing the information. I'm unconvinced that a pathological fear of activity even exists, at least commonly enough to be included in general guidance – most non-depressed people will just get bored with unnecessary rest. If they push...

It's absolutely outrageous, and whoever sanctioned this should be facing disciplinary procedures. I'm speechless.

And yet I heard a government spokesperson today saying [in connection with the commitment to prioritise reopening schools] that the evidence shows children don't transmit it to others. It appears no-one really knows for sure, and that we're all going to have to cope with the consequence of...

Clearly hasn't read anything about ME either, never mind lived it! Though I guess we should make allowances if she's ill. Hopefully someone on Twitter will put her right.

But can those of us who think we know our trigger be absolutely certain, especially if 'two hit' theories come into it? Many of us just don't know, especially when it happened decades ago and we went undiagnosed for years. For instance, my boyfriend was really poorly with EBV the year my ME...

I suspect we may even end up with some poor souls who meet both the ME criteria and those for lung damage or the after-effects of circulation problems. A knowledgeable doctor (I'm led to believe there are a few!) should really be able to distinguish between them, once they're established and the...

I see what you mean, @Trish...I can't make a lot of sense of it either! The only thing I've learnt about fatigue is that it's part of a continuum with pain. I only usually take a pain med at night, but if it's really getting to me during the day, I'll occasionally take a dose of paracetamol or...

The oddest sensation I've had is a grinding, low-frequency vibration that goes down the centre of my spine. I've only ever seen it mentioned by one other ME patient, years ago. It only happens when I'm extremely unwell with an active flare, and on about half the occasions I've experienced it...

I wonder if one factor could be that people living in areas with the highest population densities are more likely to be housed in overcrowded accommodation, poorer, and in worse health (e.g., living with obesity and/or diabetes) to begin with? Obviously this doesn't work in every case – in...

Slightly off-topic, but it might be worth saying that this is a fallacy that's been hanging around for decades in organisations that can't be bothered to check. There is no national registration scheme for disabled people. There is a register for blind people, and a few local authorities operate...

This. I don't trust any health professional who doesn't grasp it very quickly. Why doesn't anyone in the health service understand that patient advocacy and support is the gap that needs plugging in chronic illness, not access to psychological services? In some specialisms this function is...

Yes, I'd prefer this. It's a shame that you can't just credit the vouchers to your Paypal account, which would mean you could spend them almost anywhere – but I suppose that might incur extra charges.

I just don't worry about it. If I'm still awake after a couple of hours, I get up and do something – pick up a book, put the World Service on, poddle out into the garden, eat a slice of toast, or whatever. When I feel I need to go back to bed, I do. I know I'll sleep at some stage, even if my...

I've been doing this one since April. I've found the central contact team a bit hit and miss, but once you're actually allocated your health professional, it's much more reliable. My nurse lives near me, so she always does my test first. She'll ring on Mondays at around 8:00am to check I'm...