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I suspect that now that patient notes are computerised it would go straight in the waste bin for hygiene reasons. I share the concerns about length and both that much of it may not apply to your own case for particular admission and that it may be quite hard to know which bits do apply. I...

That is what I am not sure about. I have had 'Long Covid' for about 2 months on two occasions. I was completely exhausted and had no sense of being able to do anything that involved exertion but at no time did I think I had the illness that members here describe. I had no OI, no sensitivity to...

Actually wrong. There are studies that show no connection. And the one thing that they make clear is that it is at present all speculation.

I can't look at the module without pretending that I have POTs as far as I can see.

I agree. Without being able to see the self-advocacy advice it is hard to know how useful it would be in general terms for self-advocacy. How would one test whether it was helpful or just made professionals more unhelpful? I have no idea but my gut reaction is that it might backfire badly.

I spent about half an hour going through the material on the main website. A lot of it is not reliable. Although there are scientific articles they aren't necessarily good or helpful science. ME/CFS and POTs are areas where there is a huge amount of muddled thinking. This sounds uncomfortably...

I don't see any controls. There is also very little information on patients' symptoms or why they might relate to microvascular physiology. I think at least some of the authors are POTs enthusiasts.

Yes, I thought that was interesting. There seems to be a clear difference between men and women and that made me think that this could not be just a chance finding (unlikely with the p values) or more likely a processing artefact. It looks real. However it could be a real effect of some dietary...

I am puzzled as to why the module is free but you have to sign up and do it in three weeks. Is the information being input being used by someone and is the covered by an ethical board? The website may be affirming but a lot of it does not look to be accurate or based on evidence. We are having...

I think I have avoided considering PVFS as a category although no doubt it once was. I agree that it is too vague to be useful. Categories are of course allowed to overlap even by as much as 66%. In rheumatology we have lots of overlapping diagnostic categories that are all useful because they...

I agree that there is stuff that needs trimming out but as a guide to understanding the diagnostic category and how to make a diagnosis it has a lot of good material I think. I wouldn't suggest it was used now in isolation. Maybe there needs to be an S4ME Learn About ME/CFS package! In...

Nobody has any way of knowing I suspect. But considering the evolutionary pressures that might make a sickness response useful my guess would be that if you have active infection it is a good idea to curl up in a cave and wait for the immune system to do its work rather than trying to hunt for...

Those just look like idle speculation to me. Arguments about adaptive responses are always pretty conjectural. I would need to see some specific evidence for e.g. lymphocytes needing a lot of ATP. Every day we make buckets of red blood cells and repair muscle and gut cells. We also make a...

Interesting that you have not found replication in the literature. The Tronstad data look very believable to me. Maybe it is something to do with Norwegian dietary practices!!

I may be being dense @chillier , but reading the Tronstad paper puzzles me. The suggestion seems to be that pyruvate dehydrogenase activity is down in ME/CFS. If so I can see that group 1 amino acids might be unaffected if the rate limiting step in degradation was to pyruvate. But for the amino...

I would turn that on its head. Empathising without knowing the facts is the road to disaster. Anyone can empathise if they feel like it. Empathy worth having is empathy backed up by knowledge. Lots of doctors make a living out of pretending they take people seriously. Not so many know exactly...

What would that be exactly? I live in Woodbridge in the summer months and get there off and on in the winter.

I think you are splitting hairs and elsewhere I make it clear that I am not expecting any of these distinctions to be cut and dried. I talk about extensive grey areas and the similar overlap in arthritis that still do not stop us from thinking that something different is going on in a certain...

I didn't invent the term PEM so I don't know exactly but it presumably refers to more general symptoms than 'fatigue'. In its original sense malaise implies a state that can include nausea, OI and pain (generally widespread muscle pain) yes.

Much of the article is very good but it is a pity that Dr Kane goes off at a tangent on unproven treatments towards the end. In some ways I think it is a pity that CBT got let off the hook at NICE 2021, and was allowed to stay in as a means of 'support'. If anything the most important message...