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Why does it take so long, say, up to a couple of years or so? What immune processes have failed to switch themselves off, or isn't that the issue with PVF?

Noooooooooooo :arghh:

I'm very sorry to hear that you have extra problems on top of your ME. But what we hear from a lot of people in that position is that their extra problems get dismissed because they already are seen as having a condition that's all in their heads, and so the extra stuff is probably all in their...

There could still be a struggle at the individual level but a global shift in perception would make that a lot less likely, IMO. I think we'll have lots of doctors switching views and forgetting that they ever thought otherwise.

As I understand it, solid evidence of disease would also come from genetic association studies (such as Zhang, if we were more certain of the methodology), or some empirical confirmation of a theory such as that of @Jonathan Edwards that wouldn't necessarily be consistent enough across...

Chapter 29 of the Kurzgesagt book and now I know what an interferon is (they're amazing!). I now understand two words of the title! :woot::woot::woot: Short chapters, easy read, nice pictures - join me, fellow biology neophytes! There's still time!

I don't think that we do. There's nothing reliable that shows that it's in our bodies, and so people are defaulting to the idea that it's all in our heads. AFAIK, PACE and MAGENTA showed that GET doesn't work, not that exercise doesn't work - I don't think there was any evidence that they...

I have no way of knowing, because thus far, it mostly hasn't felt safe for me to have a frank and rational discussion about my ME/CFS, and even when I've spoken frankly, I don't know whether I'm being lied to in response. But I'd like to believe that a large proportion of people, including...

But surely if we get some solid biochemical links, that should be the threshold for any rational doctor? My fear is that we could be waiting another five or ten years for an even half-effective treatment, and being not seen as having a disease, is, as we know, not just socially damaging but...

I'm really sorry to hear that. Apart from migraines sometimes, I have not just little pain, but zero pain and have always counted myself very fortunate.

We've had some discussion before of what the criteria are for calling something a 'disease' rather than 'an illness' and I know we're all desperate to cross that threshold and be able to go around shouting, 'I told you! I've got a proper disease!' But I have forgotten the criteria and the...

We could have done with being named after somebody all these long years instead of being stuck with an incorrect biomedical name and a name meant as a stick to beat us with. But when can we get rid of 'ME/CFS'? It's all kinds of awful (see above).

According to Google Translate, 'pimna' means 'drunk' in Bulgarian. Mysteriously, 'imnas' means 'imnas' in Ilocano.

This naming business is a lot harder than you'd think! This is what WHO says about naming new diseases: Diseases are often given common names by people outside of the scientific community. Once disease names are established in common usage through the Internet and social media, they are...

We've gotta get in there fast, then! We must prepare to be the crowd!

:trophy@

Though I went straight to horror and you went straight to Abba!

GIMEI... That's going to end up sounding like GIMME... :eek:

Have you ever thought about doing a book (or series of papers) about myths in medicine? PwME seem to have been on the receiving end of a whole ton of these and it's been shocking to learn how the permeate the field.

Argh! One more day to mug up on immunology, though. I have nearly finished the stuff about what happens if you tread on a nail (bacteria). Response to viruses next! :woot: