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That seems to be often the case. They are 'expressed' (i.e. make RNAs) very specifically in certain cells. Only if you could sample the cells and you cannot sample nervous tissue without destroying it. (Not sure what you mean by gene scanning. The genes in terms of DNA are of course in all...

Yes, thinking back to information sheets I have written this is hopelessly inadequate. I always explained what the drug was supposed to do and why we thought that might help.

I think that statement and the fact that the neurological classification was a mistake are correct. There are no measurable abnormalities that we can confidently attribute to ME/CFS. Other than secondary effects of chronic immobility and poor nutrition.

Afraid not.

This is a complete joke. I remember a departmental journal club around 1995, before adalimumab was licensed or even had that name where we discussed a case of Castelman's and the known fact that it was associated with high IL-6 levels. Adalimumab is an IL-6 inhibitor. Those of us who were aware...

It sounds encouraging. I have looked through the paper rather quickly and cannot find any account of what the genes puled out actually are. I think that the usefulness of the data will depend directly on what the genes are and what the combinations are. Hopefully someone can tell us.

The best thing I can think of is a dose response study, with 3 or 4 doses (9-12 cases). The lowest dose effectively acts as a control. You would also want to ask patients if they guessed whether they had a big or small dose. You might get a clear cut answer, but you might well not. The real...

No idea really but not this sort of self-fulfilling open trial.

Except that they are not effects, merely observed changes. Nobody knows what caused them. I wouldn't want to see any more of this without (a) a basic theoretical justification (b) some usable data, rather than these. You cannot just say you think X is due to a bad autonomic system so let's...

Yes to both. Almost as barbaric as trepanning or blood letting.

Yes and why they think it might help. They could provide an explanation for why patients should be interested for S4ME.

Frankly, if I had had to think about all that when I was on an ethics committee for ten years I would have resigned overnight. This is the problem I was talking about. Being buried in issues that should be sorted by simple default legal rules.

You could ask them for some information - real information.

Whenever you get a group of people like this with bee's nests in the pants of their hobby horses you will get a Lord of the Rings/Harry Potter situation where you can never quite work out who is a goodie and who is a baddie. They are all a bit nuts.

It might do. But I have now given up offering to review grant applications, unless I think they are really important ME/CFS ones, because I cannot bear the tedium and meaninglessness of wading through pages of stuff about conforming to Helsinki, PIP, diversity, and trying to answer why these...

It would be up to the trialists to ensure safety. Giving patients that sort of information would not be valid 'informing' because they could not be expected to be able to interpret it.

The basic problem is that if ethics committees are not applying ethical principles it is either because they do not understand or because they, or their chairman, does not want to understand because it is politically inconvenient. In that situation it will make no difference how many checklists...

Do you mean guidelines for trial practice? I am doubtful that any attempt to target protocols and guidelines will have any impact. Protocols and guidelines are inherently flawed, incomplete and bendable. "Because it says so" is never a good argument. I think it is much better just to lay out the...

I like this idea too. It might seem a bit technical but, as several members have said, once you get your head around the reasons they aren't too difficult to follow. I think it would be good to have on display a simple explanation of why so many trials are uninterpretable, written for the...

I agree. The whole thing is underwhelming. 'High profile' biomedical science seems increasingly just to be re-arranging the verbal deckchairs on a ship whose crew don't really know where they are supposed to be going. Lipkin's group provided some useful negative findings on viruses and...