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Wow... Thank you... Next question, of course, is how we get these done?

I'd always thought of the bleurrgh as a separate thing on its own, with nausea, pain, etc. separately identifiable - as a collection of individual symptoms, rather than one single symptom that has different manifestations. Not sure about the diagnostic/research advantages of thinking one way or...

But surely if you have schizophrenia, you can't help thinking wrong. The accusation (and it feels like one) levelled at PwME is that we have false beliefs and could think right if our errors were pointed out to us. People who deny human-made climate change in the face of all the evidence aren't...

This is very interesting (and surprising, to a non-medic). But do you have any specific ME/CFS symptoms in mind? I'm trying to think of which symptoms we have trouble describing and I'm not sure what they would be. And it sounds as though it might be important to identify any examples, given...

Very interesting on Ramsay. Until you started talking about him recently, I had no idea about any of these issues with his observations at the Royal Free. But I'm wondering how many doctors (or possibly, which specialities) would agree with your interpretation of FND. I thought that we'd been...

@Jonathan Edwards - I woke up thinking about this! 'Firstly, people with ME/CFS have persistent unpleasant and disabling symptoms, varied and hard to describe...' As I mentioned in my earlier post, I was worried what an ME/CFS-sceptical clinician might make of symptoms that patients found...

Great stuff! Thanks for all your hard work on this, @Jonathan Edwards. I have a mix of nitpicking stuff and more substantive comments. Page 1 'Without known pathology 'multisystem' is unwarranted.' - Better with a comma after 'pathology'. '...well illustrated in the Guideline text.' -...

Reading the accounts here, I think you're right. It's just unbelievable how bad this has got for PwME. Literally in every medical consultation or encounter I have now, I have no idea whether the person in front of me thinks I'm doing this to myself.

The failure of peer review is scary.

Can we do anything here on S4ME about providing starting observations - for example, as with your digging on the experience of lying flat, and the recent thread that @EzzieD started on how PwME don't get colds until they start getting better? Are those the sort of observations that you mean? If...

Thanks for posting, @Mij - there's been a lot of interest in nasal vaccines that would deliver presumably superior mucosal protection, so knowing what protocol with intramuscular injections could have the same effect could be very useful. Still hoping for something in the world that will...

Yes, definitely. When I first got ill but was still about to be out and about and work an hour or two a day - i.e. mild/moderate ME - I caught a cold with streaming nose and felt EPIC. I felt the best I'd felt for ages. I felt actually well. Later, after a couple more nasty flu-like illnesses I...

I don't know about postural muscles but I don't recall whether I was able to relax fully while being jolted about. I would expect that I would have been holding my body in some tension so as not to be bounced and jolted like a rag doll. It's not a very cushioning mattress.

Wouldn't there be a risk of a whole lot of post-hockery and over-analysis requiring wiping out findings by correction for multiple analysis? Better to prespecify analyses, or at least data-mine on half the data and seek to confirm on the rest? I'd be a bit worried about a free-for-all, although...

Thanks so much, @dave30th and @Chris Ponting, for this new interview. @Chris Ponting, you said that ME/CFS is 'about 10 to 20 years behind every other disease with respect to technology'. We've perceived one of our big problems as findings endlessly coming up null or studies being too small or...

:) But seriously, this is exactly the sort of thing that would need to be done by patients at home. We could just be given monitors and left alone. I'd have thought it was cheap and easy, relatively speaking. I don't want to take the thread off-course, though. If there's any interest in...

This seems like a great idea. How can we make it happen?

Keeps it real, though! :)

I find the physical effects of strong emotion very different from PEM. I try to keep my emotions steady because the effects are so unpleasant, but basically I get hit straight away. It's pole-axing.

I think that visiting would be important. One of the main things I want doctors to learn is attitude - of the kind that doesn't result in patients being left lying on the floor because they couldn't crawl far enough to 'earn' their food. [ETA] I want doctors to leave that unit with a sense of...