Search results

Yes, but mostly managing children/adolescents. The unit at UCL largely deals with severe cases I think. At least in the past patients have been regularly admitted for treatment. At least one of the severe cases in the news has been under the UCL unit in the past but once adult there are no...

I suspect the clinicians involved will have considerable experience of severe ME/CFS. Anna Gregorowski certainly does. She deals with severe young people. I think the problem is a bit different. There need to be people involved who understand reliable evidence.

What I think it means is that ECT is still considered worth using if a previous course fails to produce lasting remission - fails in that sense. This was the case for my wife who had a severe psychotic depression. The first two ECT treatments produced rapid and dramatic temporary improvement but...

No it does not, because all the normal antibodies would have gone down too. You could equally say that it demonstrates an association between antibodies to flu and clinical improvement. And that is a totally unjustified and irresponsible statement. How does this get published? Or maybe it...

But the problem we have is that nobody knows, surely. And if each person is different no general account can be given. Moreover, we know little or nothing about the evolution over time even in individuals that might allow prediction or advice. I am not sure we know enough even to talk of a 'PEM...

So basically he was bullshitting ad lib. If the MEA want any credibility then they should know that setting up an open label working group with subjective outcome measures to magically decide what is good for people with ME/CFS is exactly the same poor quality project as PACE. Maybe the problem...

I am pretty sure that it is not just an odd case. I have reason to think that the advice to stay lying flat has been given to large numbers of people and particularly people with severe disease in major trouble. Moreover, this sort of advice is passed on to others. I am not justifying Riley's...

I am not sure about that. Patients needing feeding have been told that they need to be fed flat so that they do not suffer reduction in brain perfusion. At least one patient has said they were advised they would only get better if they lay flat for weeks or months. But the strange thing is that...

I don't understand what is going on here. Very few people are too ill to be moved unless they are on a ventilator and unstable. There may also be no point in a doctor just visiting for an hour to assess someone - the assessment may need to be over a period of days. The situation certainly...

I think that is particularly relevant. My interest in this is to distinguish the need for respite or rest in ME/CFS from the need in conditions said to invoke 'fatigue' - such as heart failure, MS, RA, renal failure, old age. The situation for ME/CFS does seem more like that in a viral infection...

No, you have it right but this is the same old cross-reactivity story that has been around since Robin Coombs in 1960 for rheumatic fever that by and large has turned out to have nothing to do with human disease. It is a bit going on prospecting for gold in a limestone escarpment when we have...

It sounds as if they are just tracking the artefacts of immune diseases in mice that probably bear no relation to human disease. I find this sort of research very distasteful.

I am reminded of that quote from Bertrand Russell 'If the gentleman at the back has not understood what I have been saying it is not necessarily my responsibility'. Anyone adequately trained in modern medicine, which includes a basic knowledge of the problems of bias in trials, and hence the...

I wasn't aware of that. Maybe it often gets called something else.

Sounds a bit like 6 blind men arranging to meet with a virtual white elephant to me. I wouldn't discourage trying to get more agreement on criteria but I doubt I shall be jetting off to feel the pachyderm in the room myself.

My impression is that the journalist didn't really have much idea of what she was being told, tried to repeat it but got a lot of it a bit muddled. I don't get the need to talk about female predominance. Breast cancer and rheumatoid are female predominant. It never stopped them being researched...

There may well be but it is hard to know what on earth that would mean. Cytokines released in association with cancer may shift traffic in all sorts of ways so you may be measuring a quite different subset of cells. And of course almost any abnormality will correlate with reduced survival in...

I agree, but I am wary of lumping MECFS in with other 'post-infective' states. One thing that strikes me is that if you have a moderately severe case of glandular fever, as I did (I required steroids in order to maintain fluid input through my pharynx) then you go through a period of two or...

I think we need to be careful about what we know here. Maybe one person in five has long-lasting fatigue after Covid - maybe for three months or more - many of which might seem to fit criteria for ME/CFS if the questions are put badly in a questionnaire, but on careful analysis not really...

We have discussed the uncertain relation between a viral 'trigger' and ME/CFS for a good while but I must admit that my current scepticism was in part raised by trying to enunciate the 'Concept of ME/CFS' clearly and realising that the relation to 'post-viral fatigue syndrome' is likely to be...