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I very much agree. But I think this could be relevant to ME, for reasons I have discussed on the forum but maybe 5 years ago now so worth refreshing perhaps. When I left rheumatology in 2010 I had been trying to persuade people for about 10 years to use an anti-CD8 Map on ank spond. The...

Do you actually have any evidence of your own to base that on? Or any published evidence? I routinely followed up over 200 patients treated with rituximab, for half a dozen different diseases. I cannot remember a case of the original condition getting worse. There are certainly serious side...

I am afraid that I don't get the impression that these people know what they are about!

Certainly complicated. But 4 months is a good time for maximal graft versus host disease. Yes, you would've thought they would have got some simple practical advice from people with experience with the approach. It should be 5-6months and needs to be interpreted in the context of B cell return.

That sounds terribly like psychology to me. I annoyed one of my rheumatology colleagues over the years by refusing to allow my patients to be recruited to psychology studies. The problem with psychology is not the subject matter-feelings, which do matter for their own sake - but the theorising...

agree with Trish. This is completely wrong. Feeling awful matters in its own right. People with late stage rheumatoid arthritis are often very cheerful despite not being able to do much because they no longer have any nausea or fatigue and others around them see their plight and treat them as as...

But the questionnaire is not designed to test 'the actual basis of fatigue'. It is designed to elicit the symptom the ordinary people call fatigue. That may be very woolly but it gives consistent results that correlate remarkably well with the effect of a TNF inhibitor or rituximab on their...

Interesting snippet. It isn't very well structured logically but the bits of data are interesting. The MHC includes complement genes and complement is involved in innate responses that have nothing to do with B cells. It has been shown to be involved in brain neuron plasticity, as they say...

As I think Trish is intimating, this is not necessarily a question of degree of 'deconditioning'. Muscle change in ME might relate to a different spectrum of usage, perhaps influencing type 1 and 2 fibre dominance. That might lead to a different response to exertion in terms of measurable...

Nobody doubts that, which is why it is used under carefully controlled conditions in trials. Actually, I am not sure it is that relevant here, since we are talking about major change to feeling much worse with PEM. In the context of study of an episode of PEM you don't really need a nine or...

Rheumatologists mostly use visual analogue scales for fatigue. And for drugs like TNF inhibitors and rituximab for diseases like RA you get slam dunk reliable shifts in cohorts. The bar charts can be predicted from the pharmacology, as I pointed out in what was billed as the most expensive...

Studies were done in the 1980s, many by close colleagues of mine - Richard Edwards, who was my chief at the time, Joan Round, David Jones and Di Newham. We worked on the same floor in the Rayne Institute in University Street London WC1. Jo Cambridge (who now works on ME) and I even got involved...

I thought you said we couldn't do that!! I think Andy was opening up a very important and complex discussion. But that gets back to the semantic confusion - whether 'really is' refers to the causal process or the clinical state. This is the oldest chestnut in clinical science.

I don't think we have any evidence for controls being 'similarly deconditioned'. All we know for some studies is that controls were relatively inactive individuals too. I think it is very plausible that the limitation of activity in PWME iso a very different sort from people who just do not do...

You have obviously not been involved in much clinical research. Rheumatologists have been measuring fatigue for decades. It is not measured in physical units, for sure, but it is reproducibly quantified. The idea that you cannot use feelings for scientific research is a pet idea of philosophers...

I think the point is that there may be a variety of responses, and, as indicated above, some may relate to the symptoms PEM and others may not. A recent study claims to show muscle necrosis in Long Covid cases after exertion. But PEM in ME isn't local muscle pain. Historic 2 day CPET tests...

I have three thoughts about this. The idea of 'measuring PEM' is quite complicated. You might measure something that actually reflects symptoms - maybe spontaneous activity. You might also measure something that you think might be responsible for the symptoms - like a cytokine on a blood test...

The peculiar thing is the statement 'our 3-month intervention seems appropriate'. It seems a waste of time. One might perhaps draw the conclusion that people with Post Covid problems cannot benefit physiologically from training. That would make sense to me - that they are in a state in which...

“Clearly there’s got to be more, because one-tenth of lupus patients are men,” said David Karp, chief of the division of rheumatic diseases at the UT Southwestern Medical Center in Dallas. “So it’s not the only answer, but it’s a very interesting piece of the puzzle.” It looks as if Dr Karp has...

A very long post for those interested. It isn't quite like that. There is a divide between the general herd of immunologists who, since around 1980, have assumed that autoimmunity was T cell driven and a small group of people who look at the evidence and think that for the majority, but not...