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I haven't voted because I'm not sure. I was definitely exposed to EBV (my boyfriend had it) but I didn't have any symptoms myself in the weeks following. I had an insidious onset later that year, at least three months after he was ill. My trigger might have been EBV—I was at the age when...

It seems all fluids increased mean arterial pressure and cerebral artery blood velocity for less than a minute in hot people who'd been cycling. But carbonated water raised it fractionally more! (Although also for less than a minute). And exhilarated their mouths! You never know, it might get...

Yep. And this tool could contribute evidence that we don't currently have, if it recognised that what it calls 'overdoing it' includes the very basics of living. Which means there's a cohort of people who have no choice but to invoke PEM, suffer the consequences, and risk exacerbating their...

The three practices I visit all have noticeboards but none have anywhere to put leaflets. They used to put them on the counters where people speak to the receptionists, but since cleaning routines changed due to Covid, surfaces are all kept clear for easier disinfection. Two of the practices...

By being so absurdly vague, they're missing a golden opportunity to estimate what proportion of pwME/CFS need support with essential daily living tasks but are having to manage without it. Those people may be at risk of poor nutrition, unsafe living conditions, injury from falls, further...

They seem to have missed at least one bullet point from the PEM triggers: • No activity other than eating, toileting, changing position, and sleeping Which contributes to making 'overdoing it' still sound like a choice to do something unwise, rather than an inevitable consequence of being...

A general question: when enlisting patient reps, are there ground rules that'd make it difficult for the convener to invite S4ME to apply for a place? It seems a wasted opportunity not to, but I do understand it's not always straightforward.

That was the thinking behind the suggestion. First, people with severe and very severe illness need care. In hospital, of course, but also domiciliary care such as regular monitoring in people who are stable, and working to prevent hospital admission in those with signs of deterioration...

Do people think it would be useful to focus advocacy efforts on specialist provision for people with severe and very severe ME to begin with? In their case, there's no argument about a lack of effective support and treatment, and no one could argue 'therapist'-led rehab clinics are suitable for...

Thing is, it's talking about gradually increasing day to day functionality. I tend to suspect people who think this way of not even having bothered to Google ME/CFS before they started opining about it. I might be wrong about the author, of course—but if their intentions were good, surely their...

From @MSEsperanza: Key Points Myalgic encephalomyelitis/chronic fatigue syndrome (also known as systemic exertional intolerance disease) is a true physical illness characterized by debilitating fatigue that significantly limits patients’ ability to perform basic activities. It is not a...

The problem is that there doesn't seem to be a follow-up game that goes: Now imagine you can never know how many spoons you started with, or how many you've already used, or how many you've unwittingly borrowed from tomorrow and the day, week, and month after. Then imagine dropping this...

I have a lot of sympathy with the sun god, Ra. Often feel as if I've rowed the length of the subterranean Nile overnight carrying the sun and fighting off attacks by the god of chaos. Which is why the La Tène gold boat found near Lough Foyle is what always comes to mind. No connection to the...

Maybe not? The thought about the internet and scientific fact still holds, though as so many facts turn out to be wrong, it must be true of all sources. Discussion of it is different, especially as a lot of it's about science's increasingly brazen fact deficit.

It would be great to know, but it'd probably need a specific study. I've been on it for more than a decade for psoriatic arthritis. I responded very well, and I think my ME/CFS has been more stable too. But if the effect is there at all, it's a smoothing of the graph line, a reduction in how...

I'd only include the first and last points as actually accurate. And the last one would have to lose the bullet-points—restorative breaks? The entire case definition of ME/CFS is underpinned by an absence of restoration.

The trouble is that surveys offering vaccines as an option will attract responses from those who got ill after vaccines. Their results wouldn't be included in surveys that didn't give it as an option, which might show the most common trigger was something else. I didn't either, but I don't...

Yes, it does come across oddly. I read it as trying to emphasise that ME/CFS status had a significant effect on only one activity-related trait (the Duration of Walk one), whereas there were direct effects on 290 non-activity related traits. It doesn't say that at all, so I may be wrong, but I...

I've seen quite a few of these beds in British stately homes. (Don't judge me, my mam was in service and liked to be taken to 'look round' them—i.e., check them for dust.) But the old beds that survive are barely four feet long, even elaborate ones in huge staterooms that were hung with...

Novavax has been updated, and private vaccination costs around £55 (though it varies from setting to setting). The service is delivered by private pharmacies in partnership with Pharmadoctor, and you can book them online. This is the outline information: This is the link to find a pharmacy...