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This has come up in the context of the Research Strategy Working Group. I would be interested to know the views here.

Except that the 'pilot' stage of this process, in terms of giving LDN in an uncontrolled fashion to people with FM and having some say they are better had been going on for yonks already?

Doesn't sound very crossover. I have my doubts about crossovers, and even more doubts about crossovers that don't crossover, so to speak. Someone has lost the plot here. The question is who? I rather like the idea of a trial where the pretend treatment is only pretend, though!

I have read through. The information is grossly misleading, as well as being incoherent in places. I would assume that if this was written in the context of any commercial venture it would be illegal on trades description grounds. I actually think it should be illegal to put out such misleading...

Yes, but although I haven't read through all of the text put below that, the beginning bit is complete nonsense. Just make believe.

If the design was 'single blind crossover' there must have been some control situation to blind against and cross-over I would assume. But it all seems a bit opaque.

If the immune systems does things better than drugs, why offer a drug?

Can anyone see data for the controls??

The ldnnow website says: "LDN is not a miracle drug. It is a drug that implements the biotherapy approach to medicine, which is all about artificially stimulating the bodies own defences and systems in order to restore control over systemic diseases. This control is how most people remain clear...

I cannot see any results for controls in the cytokine paper?

I have not looked through that paper in detail yet but one thing looks to me to be glaringly missing. They talk of a correlation between fall in ESR and fall in symptoms. But so far I have not seen a figure that shows that patients on LDN showed a greater fall in ESR than controls? If not then...

I am afraid that doesn't look like evidence @Arisoned. When a cluster of private physicians with a special interest in a diagnostic category that most other physicians doubt exist say they find something useful but have never done any proper trials that is a pretty good indication that there is...

Something as simple as that might be brilliant. A barely noticeable locket on a fine gold chain (that looked good if it showed) and just monitored how far away from the ground it was?

As a rule yes, JemPD. If 20% of subjects leave their Fitbits in a drawer for the last 3 months it doesn't matter as long as they really don't know what treatment they were on and so on average it is the same for both groups.

Thanks JemPD. I think I would enlarge on the point made to Trish, that inconsistency needn't be seen as an insuperable problem. In most biomedical science we assume massive variation within what we are measuring. If an intervention is useful you still expect to see a shift. A smear of results...

Good points, Trish. I have never been terribly attracted to crossover trials and tried to think why. (Presumably they may give more data from fewer subjects - each giving outcome for two or more trial arms.) I think the problem is in knowing whether being on LDN first arm and placebo second is...

I have come around to thinking that a high quality LDN trial for ME must be done. I don't feel I should give a running commentary on the Working Group discussions but I get the feeling this is widely agreed. In fact it may be a fait accompli in that physicians are already planning LDN studies...

I agree that there are various aspects of the LDN story that have an alternative medicine ring about them and might be convenient if wanting to argue against negative results from trials. 1. 'Go low, go slow' is a standard mantra for unproven remedies used off label. Dose schedules for drugs...

I had a look at that and was not impressed that there was anything other than speculation involved. If we do not even know its a drug works it is premature to claim to know how it works! There seems to be a suggestion that the effect might be due to a dextroisomer, rather than the levoisomer...

This is what one keeps hearing but it is interesting to consider how the physicians ever came to know this was the right thing to do. It is easy to think physicians have an eye for such things - 'clinical judgment' - and can be skilled at juggling doses. My experience of the reality is that one...