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The new NICE guidelines do not define ME/CFS as post-infective. I said very often not as far as we know on the basis that most accounts of ME/CFS give rates of somewhere around 50-70% for there being a history of infection preceding onset - so that makes lack of evidence of infective trigger...

I m not aware that any of the familiar definitions of ME/CFS make onset after infection a defining, or required, feature. I think if people want a citation it should be for an example where it is required. It is recognised that a significant proportion of patients report an infection that might...

What seems to me particularly unfortunate is that the fringe physicians are generating all these pseudoscientific theories about things like MCS and that allows the BPS people to say that all the modern neurological research shows that we understand all this complicated biology and its real but...

Looking at the patient support group URLs I can see that confusion is widespread but this looks like the EDS situation where the support group literature often bears no relation to real medicine. It seems a bit more like the CFIDS organisation that believes that ME is an immunodeficiency disease.

I don't understand this. As far as I know MCS and MCAS are in no way alternative names like ME and CFS. They are two quite different problems. MCAS has nothing to do with odour sensitivity as far as I am aware. The acronyms have just got confused by site a lot of patients I suspect.

But nobody is likely to have read it. My testimony is an attempt to explain the blinding/subjective issue to people who do not understand. I worried that it was redundant because everyone already understood, but in reality the problem is the many who do not understand never will. Fortunately...

It relates to application of the BPS approach. That is predominantly an issue for unexplained chronic pain and ME but it can spread out into all rheumatological practice for many colleagues.

Dr Katie McDonnell has on her twitter handle: Working class, clinical psychologist. Pro social equality and justice. Views are all mine! I think we would like to see less play-acting and a little less self-righteousness.

But isn't that just the workrate as measured by force x distance in terms of useful output (I assume a bike or treadmill). That isn't total workrate if there is inefficient muscle use. You would need a calorimeter - is that involved? I think I had brought in effort because you were talking...

Same villains, I suspect.

I think it is a mistake to say ME/CFS falls under PAPIS. ME/CFS is not defined by being post-infective and very often is not, as far as we know. Spades should be called spades, not handled gardenware.

I have spent some time on several occasions trying to get to grips with what MCAS might actually be. The literature is dominated by a single physician called Afrin who does not come across at all well in videos of presentations. The whole concept seems ill-defined and pretty unhelpful. For sure...

Do you mean MCAS or MCS? The two are unrelated. I don't think there is good reason to think MCS is immunological. And I am not sure why either should be relevant to LC? We want to get the detail right here.

Sadly, the piece on this site is just as much make-believe. The villains in all this are the medical professionals spinning tales on both sides of the story.

I am not sure that 'Multiple Chemical Sensitivity' is a useful term, rather than simply sensitivity to odours. Nevertheless, reading this report summary it is clearly pure BPS make-believe. It reads as written by A BPS-BOT (operating system Chalder 10.35) the does not have the optional...

That's good. But trying to Google it does not easily come up with the URL, despite putting in lots of relevant words.

The depressing thing is the continued emphasis on rehabilitation being a good thing and 'expanding'. Even in the early article they know-tow to Lynne Turner-Stokes, who at that stage had no evidence to offer and spouted the mantra about individualisation that allows the rehab team carte blanche...

I find it very difficult to engage with documents of this sort, written by people who do not understand the material they are supposed to be expert in. If I had to respond I would probably have to say: Several statements in the response to comments indicate a fundamental lack of understanding...

I seem to remember one paper that seemed to show that therapists at King's were nothing like as good as those in Holland, but I may be misremembering!

It got buried in the pages. A UK crossbench peer offering her home to a fleeing Ukrainian family has said the UK’s visa scheme is “unwelcoming” and adding to refugees’ trauma. Lady Finlay is offering space in her Cardiff home to a mother and two children, but has been waiting for three weeks...