Search results

Here's a link to that press item. It says: It has only been tested on mice so far.

I know correlation isn't causation but doesn't the relationship (including the Covid one) suggest this might be worth a trial?

Is butyrate a thing that ever makes people worse? (Honest question! I've only ever seen it mentioned as something benign.)

I've always understood this to be orthostatic intolerance (sorry if you've already addressed this, the threat has already got away from me!). I have to have my feet up almost all day and sometimes when I've been upright for too long, I just need to lie flat, and once I'm flat, I feel I need to...

I've just been reading The Anti-Viral Gut by gastroenterologist Robynne Chutkan, which focuses quite a bit on Covid. In it, she says that in a large study of Covid patients, the composition of the gut microbiome predicted the development of severe respiratory symptoms and death with 92%...

Thanks, @Binkie4 - and I hope you recover from your sleep study soon! I came across an iota version available in the UK but it appears to also contain a dodgy chemical so I think I'll go for the Boots one, which otherwise contains just water.

Just had a look at the Boots Dual Defence Nasal Spray and it says it contains kappa-Carrageenan, as opposed to the iota-Carrageenan referred to in the research paper. Is that likely to make a difference? Is there a kappa-Carrageenan spray available in the UK?

If rheumatology would be the best speciality for us, what would be the next step for getting us there? And how could we educate rheumatologists to make them actually useful to us?

I also had a weird conversation about ME with a rheumatologist that I'd been to see about something else (he favoured the central sensitisation theory) but he was very excited to hear that @Jonathan Edwards was involved in the field and that a rituximab trial was going on. Hard to judge from our...

What would you say is most rheumatologists' view of ME? Would they favour the BPS line, or understand that it's not psychological in origin? If a PwME wasn't in pain and didn't have immobility because of joint problems, would a rheumatologist be able to help? (I hope I'm not pulling the thread...

9 moved posts Given that ME seems to have symptoms across all sorts of bodily systems, how could a suitable specialism be chosen? I just looked rheumatology up on the Internet to see why you might have chosen it but couldn't find a consistent description of it. Why do you think rheumatology...

Yes, sorry, I realised - I was trying to say that we don't even get over the hurdle of the waiting room to suffer the problem of failing to get treatment once we're in! :)

We're not even talking about treatment, though - we're talking about being able to lie on a couch while waiting to be seen! :)

I've thought about the same thing but again, that's us basically lying on the floor. Something needs to happen to give us the same provision made to those making it onto a bed, couch, or trolley - if that's happening for others.

Orthostatic intolerance. It takes a bit more explaining to nurses/receptionists but once I'm in with the clinician, they accept it without question. It doesn't mean that they understand it but I think a doctor would have to be quite the weirdo to refuse a patient's request to use the couch.

That sounds like really hard work, @darrellpf! I don't know whether it might help you to know that I've always zero weird reactions from doctors to my request to lie on the couch. I've never got any vibe off them that it makes me feel that they're treating me or seeing me as in any way special...

Sorry to hear that, @darrellpf. I can't remember any consultant ever offering me the couch either - but I always just say, 'Sorry but I have orthostatic intolerance and I could really do to be on your couch now so I can have my feet up, is that OK?' and no one has ever refused or got weird about it.

That's awful, @ukxmrv - I'm so sorry that happened. Again, just unbelievable.

You may be right, but isn't like them saying, 'We don't have space for sick people'? It's just crazy.

Or even then, in my experience. :( Unbelievably, the clinic is very rarely willing to move me up the list to be seen next, even when I'm on the floor because I'm too ill to remain sitting.