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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.

I am interested to know how this method would work @MelbME. At present we do not know if any treatments are effective. If treatments are given and the person reports improvement and there are certain changes in biologic samples then we will not know whether or not either the changes in symptoms...

I may be have been naïve, but to begin with I gave everyone the benefit of the doubt. But every time I go through these three stages now: 1. I can see that there are so many confounding factors and potential biases that results reported are not going to mean much anyway. I tend not to analyse...

If she qualified in 1991 should would be expected to be 58 but if for some reason she completed her medical training late, maybe having started out in another subject should could be up to 3 years older. I think she might well be 58, although I remember her as a registrar in our very early days...

It is the obvious thing to do unless you want to run private practice. To continue having the right to practice you need to ay GMC fees which may well be £1000 a year now. You will also need to have medical protection insurance cover at maybe £3500 per year and you probably need to continue your...

The trouble with that report is that it is only two families and the knock out mice had defects in multiple organ systems - i.e. not hEDS. But a partial functional variant might produce just hypermobility. What needs to be remembered is that genetically based EDS has, as far as I know...