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This behaviour goes back to the mid 1980s soon after the internal market was set up. People who take on these jobs know exactly what they are doing and how cynical they are being -getting extra Brownie points, an A merit award and all that goes with it. By 2010 people were jockeying to get into...

Just to be clear, there is a very real choice for potential medical directors - not to apply for a job that cannot be ethically performed, or to resign when that becomes the case. I have seen that choice deliberately not being taken too many times. Doctors have perfectly good salaries without...

Yes, I realised that after writing it quickly and decided not to edit since as you say later, the real problem is elsewhere. I guess I should have said that the medical director should have made sure that he had negotiated sufficient commissioning with the purchaser to ensure that a safe...

I can only quote one case report. I looked after a patient who had developed lactic acidosis from phenformin (a diabetes drug). She became comatose and had to be ventilated. Her lactic acid levels (everywhere) were higher than my senior colleagues had ever seen. We infused her with bottles of...

If only it was so easy! Why not set up an institute for writing Schubert's greatest piano sonata (the one he didn't write cos he died). All you need is robust funding, infrastructural resources... Yeah. What if John Cage is put in charge?

The following posts have been moved from another thread But the 2 day CPET is not an objective measure of PEM. PEM is a symptom that is either there or not. If you have PEM and a normal second day CPET you still have PEM. The second day CPET does not demonstrate PEM. Its value is in possibly...

And of course Paul Garner is supposed to be an international expert on why one should behave differently, but he doesn't.

A fair question but I think there are lots of possible answers. Moreover, the timing of PEM does not fit with a build up of metabolites because it goes on too long despite rest. Take the simple example of using a are to clear leaves from a drive. Five minutes of raking produces no ill effects...

'Velvety skin' is such a subjective thing you can diagnose it in almost anyone. People with true EDS with skin changes have visibly abnormal patches of redundant skin or scars. But those who have skin changes are not hEDS, they are genuine monogenic EDS cases and probably mostly have...

It is was if Nath is at the stage of knowledge of ME I was in during the first 3 months of getting interested in it - before going to an IiME conference. As if he has never been to an ME science meeting or read the literature or stopped by S4ME.

I think we actually know that already. And even if a slight shift in metabolism shows up on several studies it is more likely to be some downstream effect of what sort of activity PWME undertake or what pills they swallow. Unravelling mechanisms isn't usually like squeezing blood out of a...

I would just warn that all this stuff is likely to be wrong. Fluid compartment dynamics is something that 90% of medics and physiologists have misunderstood for over a century. The one person who understood this well was J Rodney Levick. He and I worked on synovial joint fluid dynamics in the...

If I remember rightly there is no evidence for any of the patients in the Mudie study actually having EDS. I think it was just that someone had told them they had - which is hopelessly inadequate since so many 'ME physicians" diagnose EDS on anyone with loose joints. It is also extremely...

I admire your enthusiasm, Murph but I think the answer is no. Having spent a lifetime chasing clues in pathogenesis in chronic disease I know that the clues that matter tend to stick out like a sore thumb. Small statistical differences, which is all we have ever seen for anything in ME, aren't...

Come on @Hutan, the things you mention make no sense in terms of explaining why PWME are unwell. There are people with gross collagen abnormalities of all sorts who do not feel as if they have ME. You can dream up 'vague indications' for anything. Why on earth should flexibility make you more...

GIGO

Most strategies just kill mid-maturation B cells but the bulk of autoantibody is produced by more mature plasma cells some of which live for months, some for decades. If autoantibody is produced by short lived plasma cells then depleting B cells starves the system of new plasma cells and...

There is an interesting passage in the Byline Times piece: In 2021, 27-year-old Maeve Boothby O’Neill died after she became too unwell to take in food and water due to the severity of her ME. She was discharged three times when an NHS hospital allegedly mishandled her care and she died at home...

It is a long story, hidden in the threads, but in brief. I was involved in the hypermobility story early on in 1978 when Rodney Grahame set up a clinic at Guy's Hospital in London. It was my research base. We wrote a paper on cardiac involvement that didn't really make sense. I was too junior...

There is no doubt that aggregates containing fibrin that stain with ThioT exist - you can see them in the micrographs. The question is whether or not anything similar exists in vivo or whether perhaps ThioT acts as a nucleating agent. They are not clots as normally understood. It would be...