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Yes, me too. I wonder how many others here have secretly identified three or four friends or relatives who'd be a good match as their healthy control if they passed screening...? :laugh:

You've a more open minded view than I. I suspect some of being out and out grifters, and would be surprised if they believed their own hype. As for the patients, not everyone will know that remissions or gradual natural improvements are possible. If they took supplements and it coincided with...

What therapy, though? There isn't any. If patients aren't there for initial diagnosis, tests to exclude alternative diagnoses, teaching of pacing and management techniques, assessments for disability aids, referrals for mental health support, advice about negotiating reasonable adjustments...

I've often thought this would be a useful thing to investigate. My experience is similar, albeit on a more modest scale. For me, the quickest route to PEM is using my abdominal muscles to lean forward and outwards, as you would if putting a new shrub into a garden planter. My abs are fairly...

Yes, and that weird thing about how capacity collapses in PEM. When rested I can take steps across a room whilst speaking or laughing and it doesn't make me breathless. In PEM, I move six paces to pick up a book and I'm out of breath; when I sit down again, it takes several deep breaths to...

From @MSEsperanza: There has been a follow-up and an update on @dave30th's blog post. From the 'follow-up' on 2023-10-19/ David Tuller: https://virology.ws/2023/10/19/trial-by-error-a-follow-up-on-anxiety-and-depression/ UPDATE:

Although I agree that there's a major problem in the culture of medicine, what she says may be a fair point in some respects. Most primary care doctors won't see all that many ME patients, they rely on clinical guidelines and the general trend of research to inform their practice, and we're...

I wonder if we might be slightly at cross purposes? It seems to me that making PEM mandatory isn't so much about defining ME as researching what causes it. You can't study a disease unless you're as sure as possible your sample has it, and for the time being that makes PEM essential. Nothing...

Equally there's no proof that some people with ME don't have it. Yes, of course it could be possible for the underlying dysfunction to produce few or no recognisable symptoms. But the fact that a theoretical possibility could lead to some people being excluded incorrectly still doesn't make it...

I forgot to thank you for the work you put in. As usual. :rolleyes:

Excellent analysis, @Trish. I might quibble with one word: Inhumane is a more emotional than technical term, and I might replace it with something like "poses an unacceptable risk to patients' health". In a some respects that risk is a category of its own, so another approach might be...

This. It's one of the reasons some illnesses are in a different category when it comes to the issue of information. Perhaps that's what needs to be communicated better to journalists. But how are the newly ill to realise the extent to which highly-qualified people talk absolute tripe on...

I usually swerve social media and only read the mainstream press, and they tend to report mostly on published trial outcomes. The difficulty for journalists is that researchers want to highlight success, so the release will focus on the most positive aspects. With bigger stories—a new discovery...

If you're anything like me, you lose the ability to approach from the garden gate. You start on the wrong side of next door's hedge, dodge round the back of the garage, trip over the bins, do a meandering circuit of the garden, eventually spot the gate, and then stumble up the path. You then...

Here's a live action shot of one being made.

Tri-balists, I reckon. There's always the old-fashioned one: trick cyclists.

I'm not quite sure how it'd fit in with the fact that most children born in Westernised countries from the late '50s onwards were vaccinated against poliovirus and grew up in societies where it was to a large extent eliminated, yet plenty of us went on to develop ME.

I always wondered why the glands under my jaw swell up when the PEM hits. They must be interfacing too hard.

It's funny how people with no medical training assume that a brain-mind-body interface is pretty much a given in anybody who's alive, isn't it.

It said on my bit of paper that it's been adjusted to take account of the Omicron sub-variants, so I imagine so. They're always going to be one or two steps behind, but it doesn't necessarily make a lot of difference.