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But none of that is recognised by anybody else as far as I know. To me a crash is just a long lasting major set back. To others it is a sudden worsening rathan a long-lasting one. So we don't seem to have much agreement.

But nobody has defined what symptoms are underlying and what are extra, so I find it hard to see how you can define PEM that way. If it is just the type of symptoms then we can forget the PE part and just ask about the extra symptoms.

I don't know what i was referring to there (I cannot see a link back) but it sounds like something else.

But with all due respect this is again backwards. We don't have any medical understanding of what is happening in ME/CFS!! We are going entirely on what people tell us. If people with ME/CFS believe they have PEM because doctors have explained some theory to them then we are in deep trouble.

So, this makes it even more difficult to believe we can usefully get to grips with a PEM deinfition. If you have it all the time it cannot be identified as PE M since it isn't post anything but all the time. Your claim presupposes that there is something called PEM that has some characteristic...

I don't remember saying that. We were the first (Leandro et al) to show that Ro antibodies are particularly slow to fall with B cell depletion.

It isn't that simple. Dara kills the plasma cells. Ritux just prevents replacement. Some people on rituximab, although a small minority, do get deep IgG depletion on a single dose. I know because I was the first to do this in large numbers for autoimmunity. Moreover, if you repeat rituximab four...

I wondered that. So things do not necessarily go as pear-shaped as it seemed. But resistant plasma cells are perhaps most likely to be the long lived bone marrow ones. So Fluge and Mella may just have killed the easy short lived ones that rituximab depletes. Ritux does tend to produce falls in...

I don't think so; the symptoms were "as subtle as a brick" but the causal relation, which is the core of PEM, was not obvious and had to be suggested. A cardinal rule of taking a history in medicine is that you do not ask leading questions. You do not suggest causal links. This is why PEM is...

I think the GWAS context is very atypical. The hope is that by adding a questionnaire you get close enough to a biologically meaningful category of subjects to get a statistically significant result on signals you know are going to be causal with big numbers. For nearly all other research the...

Now, hang on. PEM is such a subtle thing that you can have ME/CFS for several years without knowing you have it? It has to be suggested to you? That seems to mean that asking about PEM is not a reliable way to identify ME/CFS. Which wouldn't surprise me. I think we are a long way away from...

Polyclonal IgG levels remained unchanged, which may be explained by a subset of normal PC with reduced CD38 expression that survived during daratumumab therapy. That is a pretty striking finding. It seems to suggest that if daratumumab has any efficacy in ME/CFS it is not due to killing plasma...

A small point. I never met a person with RA who emphasised their pain. Most were quite reticent about it. It had become a normal part of their life by the time they got to me. Most of the time they underplayed it, hoping that I would say things were not too bad or they didn't have chronic...

These are good questions but they do not have yes no answers. they elicit further narrative. That then has to be interpreted. So this is nothing like a questionnaire. It cannot help researchers. You cannot specify as criteria that you will include subjects who say "Well doc, if I were, say, to...

So they need to learn and understand and when they have they will have no need for a questionnaire. I have explained various reasons why doctors do not have verbatim questions. If the patient has made it clear that they have PEM in their own words in the 'history of the present complaint' then...

God help us. Pain is going to 'impact' disease activity scores because they include an assessment of pain. If any newer members are interested in examples of just how bad most biomedical research seems to be these days (which the old lags need no reminding of) try this one.

In all my time in medical practice i never used a questionnaire to diagnose anything. Other health professionals frequently dream these things up but in a sense using a questionnaire is an admission that you don't really know what you are looking for so have to borrow some other "experts' "...

Yes, but as I have already said in various posts, that is no reason to follow suit. Research into ME/CFS is largely too poor to be useful. We need to up the game. If people are minded to go on doing poor studies we are unlikely to persuade them to stop. What people with ME/CFS see as a central...

That looks unhelpful. It fails to quote the study that showed no overlap with ME/CFS. It also fails to point out that MCAS remains a fringe concept in general medicine that has no clear definition. Moreover, Bateman Horne are not a reliable source on things like this. We now have DecodeME and...

And that as well. For ME/CFS I suspect we have shedloads of both.