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I vote for introduction of the 'Perez sign': writing papers on FND is a positive diagnostic sign of: FND. It is a sign found in no other medical condition and only occurs when the patient is at work. When they are playing football it disappears.

I am not sure that in this situation it is ever possible to 'know' much more. The results of the original study are out there. No information is available as to exactly why it was not followed up and nobody can be forced to provide that. The charities use people like me to judge whether or not...

I m not so sure. I have never been able to work out what the nano needle study could possibly mean. The geometry of the apparatus did not seem to be appropriate for cells. I think it may be that the LC field has rightly ignored the study because nobody else familiar with blood cell...

I doubt it means very much even in the context of acute Covid, @Sasha. I cannot see any relevance to ME.

Yes, it looks like a straightforward untruth. And from what people are posting maybe one of many. In a court of law would have thought advertising something based on actual untruths was fraud. Of course in recent times that sort of behaviour would get you a peerage if you put a bit of dosh in...

Yes that is a good point. I was thinking more in terms of the objective of the workshop - which I think was to bring researchers together, including potential new ones, to beef up the scientific community resource. Something may have been achieved in some 'bonding' between a few researchers but...

I agree with Andy. One of the big problems of online workshops is that you do not have the opportunity for private conversations - which are where people actually make progress at scientific meetings.

I find this sort of 'research' pretty distasteful. It is basically snooping and snooping with the assumption that at the end of it you know how to 'help' people using an infographic or something. It may seem sympathetic but then that is part of the self-justification for these people...

I don't know much about minimally clinically important differences but the idea looks confused to me. If you have a scale from 0 to 1 in roughly 0.1 steps then I would expect the minimum change relevant to a patient to be 0.2, just possibly 0.15. But in a trial where you have a large enough...

No, it is fine. As long as I know it isn't going to go into a viral spiral!! Which I know it won't.

Well, I would hope that nobody claims to have a comprehensive understanding of that, especially when we are talking of very heterogeneous presentations. It is not even clear that Long Covid is a useful category beyond ME after Covid. Yes, they do. I saw it fairly often. But not the slightest...

I agree that if anti-DC8 has not been given to humans yet a safety focused trial is in order. But I would expect it to be possible to do a primate trial either of the same antibody or something expected to have significant depleting efficacy for the primate species. If depleting CD8 is safe in...

The list looks a bit like a second hand impression of what someone has heard, as I think you are suggesting. My question would be why is someone writing a list like this if they are not well-informed on the matter? Perpetuating popular memes about certain viruses is not very helpful. These are...

I don't know. I suspect that drug companies had cold feet and no independent academics have had the sense to give it a go.

Depends on whether you think 1 in 30,000 is common. I am not so sure.

That is an interesting document but if I remember rightly it was put out by Genentech at the time when rituximab was made available for RA. Genentech really didn't like the idea of rituximab being used in RA. I had to persuade them it was useful and get Roche to do the trial. I suspect the risk...

OK, but in general the side effects of rituximab are nothing like ME. ME patients may well get PEM from the rigmarole of having an infusion, so I don't see that as to be blamed on the drug itself.

A trial of anti-CD8might be the simplest option. If it did nothing with CD8 depletion the idea would be refuted fairly effectively. DecodeME is the other way, to pick up genetic link leads to threshold effects - so let's see.

You might but might not. A T cell overenthusisam mechanism could be tripped stochastically by anything and not have a genetic link. Itmight, but then again it could be a regulatory sensitivity factor other than HLA. Examples are complement gene links in lupus, which are still in MHC, but not...

Maybe just an anti-CD8 antibody to reduce CD8 activity generally. It would be interesting to know what has been established about the specificity of the anti TRBV9. Maybe it isn't as specific as they hope and is more broadly anti TCR.