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Well, we know all about lists of co-morbidities with ME/CFS. That is a pretty sure sign of make believe. ;)

It would be a mistake to call it ME/CFS if there are documented autoantibodies like Ro or La because it would then be very unlikely that any response to a B cell related treatment could be usefully extrapolated to people with ME/CFS (without the autoantibody). And the whole point of diagnostic...

The pictures are interesting in that the colour signals are mostly in sensory association areas and seem biased to the right. The pattern does not look like an inflammatory one to me unless there is an immune reaction to a local antigen associated with particular functions. Even then, the bias...

Two relapsed at B cell repopulation at 6 months. Those that didn't either remained completely well or improved further to be well.

So a lower hindered index and restricted fraction would go with a brain that is just wetter, without more cells? That might be consistent with postural effects.

I would expect water both inside and outside cells in white matter to have a degree of anisotropy to its diffusivity, certainly for outside and for nerve fibres. FF refers to fibres I think. Is it that the anisotropy measures stratify across the 'hindered' and 'restricted' components? Hindered...

Then wouldn't the reduced restricted fraction in patients indicated fewer cells rather than more?

I am not sure that is right but I have not been able to work it out. 'Hindered' and 'restricted' appear to be quite different parameters here. I think restricted may mean anisotropic - which would go with water in and around axons being able to move in ne axis but not so much in others. But I...

The basic problem with adrenal steroids is that if you give a small dose the adrenal gland just adjusts to offset the dose and you are no better off and if you give a dose greater than usual daily requirement you both suppress the adrenal completely and induce a range of long term effects...

I very carefully chose 5 patients with uncontrolled disease but relatively little damage, out of 500 cases under my care. They all responded over a period of 3 months. The one with the largest extent of inflammation took longer to fully control.

A decision is made by the MHRA, which by and large uses a sensible analysis of the level of evidence of efficacy and of harm. They are not bothered by political issues. To be paid for you also need approval by NICE, which can be slow but tends to follow automatically unless price is exceptional...

I think this is an important point. People with severe ME/CFS are bound to want to try treatments if they are led to believe they may work. But since the off-label drugs being used do not have any valid rationale in terms of disease mechanism they must be considered as likely to benefit or harm...

The abstract looks pretty meaningless. It is a heterogeneous group of 'connective tissue disease' patients. The results are judged in terms of 'satisfaction'. I wonder what David Putrino is doing on this?

An interesting review, probably worth some extended reading if one is interested in why one feels good. I suspect the mistake has been to think that the 'brain' senses dopamine like a nice smell or taste. It one takes a neuron doctrine individual cell approach it makes complete sense that...

I wnder how good the data are for depression. This would be classified as a medical device so would not have the stringent requirements that apply for drugs in order to get approved.

I haven't got my head round this. I ma impressed by your attempts. I see a lot of potential confusions here. Early transudative inflammation is mostly a matter of increased free water. After that you get cells coming in and free water may go down. I wouldn't expect glial activation per se to...

I have just dipped in to this. It worries me that it starts off with: ME/CFS is a complex, chronic disabling medical condition, affecting multiple body systems (immune and nervous systems predominately) that has no cure. Is this supposed to be 'supportive'? I agree in presenting the situation...

Ah yes, sedentary. That would be different. The brain is about the same height above the heart whether you are sitting or standing. Lolling is a different matter though!

The people involved really have no idea about research. They will just get someone at MRC or NIHR to give a cut and paste answer. We are not dealing with people who understand the problem, so I don't think the strategy can just be based on reason. It has to be based on reality and politics.

I can probably report back on what they suggest as a service format. Members do not act as representatives of a specific organisation view by and large. They give their own opinions.