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In me, the ceiling disappears altogether. For a while. It's never seemed to me that our cells can't make energy; more that they're being told not to. With adrenaline that lid gets knocked off temporarily, because it's an emergency (even though it usually isn't a real emergency).

Me too. But the more adrenaline, it always seems the worse the PEM! So spending about half an hour swimming 1.5k, which doesn't involve much (if any) adrenaline, can leave me in less severe PEM than spending about half an hour sitting down talking to a friend whose conversation makes me laugh a...

If you can't remove the cause of the sticky blood, then I guess yes? But if it actually worked, it would provide a target for further research. And once a lot of the gunk has been filtered out, treatment with existing drugs might help delay its return.

They're saying 'a version of APS syndrome', which I suppose could mean something that is not APS but produces similar effects? It's not a very satisfactory way of expressing it, though, even assuming they know what they mean in the first place.

I've been thinking about this whilst trying to find the best way to record swim data, and it's clear that it's the app that makes most of the difference. For instance, standard health apps aren't interested in whether someone is resting in a sitting or lying position, but that would be...

You know those air fresheners in public buildings that are triggered by opening the door to the toilets? Every time the door of the staffroom is opened in one of the fatigue clinics, it should trigger a recording of Dr Khan's "It is a myth" statement.

That's a good thought. I'm pretty sure I know what induces my falls – PEM-induced clumsiness, "spaciness", muscle rigidity, and dizziness – but am also pretty sure that a lot of therapists aren't even aware of those symptoms. ETA: small clarification.

So reading what @Trish, @Jonathan Edwards, @Simbindi, and @Peter Trewhitt have written, should new-style clinics begin with the following? We can't put ME right, but we can: Learn how to diagnose it reliably and record a detailed picture of the onset pattern, symptom profile, and natural...

I think it needs a venous catheter? I remember a relative having one during his treatment. It's presumably fairly routine in hospitals when monitoring some conditions, but it's invasive, so I doubt it's something a local clinic would offer.

Yeah, right.

It wouldn't necessarily mean the text of the guideline, would it? It could mean accompanying commentary or framing, for instance. To me that seems more likely because text changes could trigger a demand for further consultation...but really, who knows!

I've only used the type that helps your companion push the chair, when I first started struggling to walk. She said it was a big help, specially uphill. Other than that, my wheelies have always been more about getting out into the countryside than shopping etc (although I do depend on them for...

Yes, sure: https://www.biospace.com/article/theravance-shares-tumble-after-phase-iii-cardiovascular-asset-fails-to-hit-primary-endpoint/

Unfortunately the Phase III failed, and the company now faces making a lot of its staff redundant. I know that's how it sometimes goes with drug development, but it must be gutting to put that much effort in and end up with no drug and no job. You really have to feel for them.

I think we should expect them to tell patients what is known, without trying to explain what isn't. We know that ME patients say they can't do nearly as much activity as before they got ill, or sustain it for as long. That it takes much, much longer to recover from activity, and that if they...

This is the main challenge with scooters. You not only need to tense your legs to keep your balance, you have to hold them in position too. Relaxed, they tend to flop outwards at the knee, which would mean tensing your core to hold you upright instead. It's the reason I went for a wheelchair...

Did you borrow a Tramper? They used to let them out at two or three of the Peak District cycle hire places; I last took one all the way around Ladybower before I got my own wheelie. They're hard work compared to a wheelchair, but it is so wonderful to get out. Hopefully you won't feel battered...

One of the things we need to include is a full picture of the impact of treatment on our lives. We've all cut activities out when we've been feeling worse, and often they're things we'd never think to mention to a doctor: fewer phone calls to friends and family, not vacuuming for ages...

Well, I've got Chinese sage in my garden, and I'm sure I've seen milkwort growing on the allotments...could make myself a small fortune!

Or that we need more research on connective tissue diseases, for that matter; there seems to be really quite a lot of research about them. Why can't we just have more research on something we've all actually got?