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This looks pretty enlightened. I guess that the wording of requests e.g. 'need a list of outcomes, appreciate links' is a reasonable way to encourage everyone to suggest sources of information. In the NICE exercise, though, the initial phase of asking everyone what they thought was largely...

I agree. I was thinking of writing almost exactly the same post. So far nobody seems to have worked out a plausible mechanism of origin for POT. It isn't just autonomic failure. It is very unclear to me where it is supposed to start off. I suspect it may not be a very good way of categorising...

That may be a good analysis. At present I am focusing on the issue of managing OI and potential cerebral hypoperfusion in the context of very severe patients unable to eat and needing nasogastric feeding and trying to put out a viewpoint document on that. It is a problem that has been followed...

I think you may have misunderstood the context of what I said. As indicated to Hutan, I suspect things are complicated. I am quite certain ME/CFS is almost always associated with OI. The discussion of blacking out on standing was in response to Jem's question. I am not sure that it has much to...

That is what I would have predicted, but we don't have good evidence for the changes in cerebral perfusion reported on tilt table tests are actually the primary cause of the OI. SO things can easily get complicated.

So I am a bit confused. Lena said the focus was on medical interventions and supplements. It would be good to have some insight into what this actually is and whether it is being run by people who understand the problem. In the UK we have had government working groups discussing innovations...

The shift in plasma protein level is almost certainly part of a long term mechanism to re-adjust the blood volume needed for perfusion requirements in a continuing recumbent state. It is presumably a way of saving energy that otherwise would be spent on maintaining homeostatic mechanisms for...

I have never asked in detail but my memory of patients on chemotherapy is that they would say 'I can handle it and I know it's worth it but I just feel so tired all the time.' I cannot imagine them 'crashing', just going to bed a bit early and saying no thanks to watching a film.

It would. I always get that after getting up from a sofa if I have been sitting upright, but I don't get it getting up from a sofa if I have been lying down - which makes me think that things are complicated and maybe when I am sitting venous return is poorer because of the 'kink' in my body at...

If you are full time employed at a desk job and don't go running I suspect that venous pooling capacity is kept stable by the very tiniest of fidgeting movements of the legs from time to time. The idea that you need to strengthen muscles to handle that seems to me pretty implausible, and, as...

I am wondering whether reduced cerebral perfusion on standing with a normal blood pressure in ME/CFS reflects a greater vasoconstrictive response needed to maintain BP because of peripheral blood pooling in the context of a shifted venous pool distribution and maybe reduced blood volume...

@Ken Turnbull , I am wondering how reliable this test is as clinical information. Novak seems to have created this category of orthostatic cerebral hypo perfusion but I do not see any clear indication that it is meaningful. About 10% of a retrospective series were designated as this, having...

I think it is simpler than that. There is no reliable evidence that any treatment works of ME/CFS.

It looks completely meaningless to be honest, if it includes lupus, MCAS, any symptom, any time after Covid... Everyone who is ill for three months has it. I doubt the National Academy of Medicine is a particularly good organisation to be producing a useful definition.

What they are open about is that the study is seen by them as a political imperative. In other words not looking and learning but finding illustrations of an already crystallised campaign message. That to me is not ethical if dressed up as an academic study.

From what you say, @Lena Kjempengren , either these authorities don't have a very clear idea of what they are doing or are asking these questions as a 'politically correct' inclusion of users. Are you part of an organisation dealing with ME/CFS? The answers to pretty much all their questions...

I must admit I thought they were the same thing. But I think things are a bit more subtle and may have changed since I registered. You need to be registered with the GMC i.e. on the Medical Register, to have a license to practice but you can be registered and your license lapse if you have not...

Who is the influencer here - Agle or Cefai or both?

I am from Vulcan, like Mr Spock. I had my ears done a while back. Garner (in his professional capacity) is from Woof, an interesting planet which has an entirely fixed orientation so that a single year is also a single day - always All Fools' Day. It is said to have very good scuba diving...

What is Dr Cefai's role in the project? I missed that.