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That is true but more and more I see that what has happened in ME maybe should be happening on a much wider scale in areas where the problem is not unethical or unscientific action but just a lack of motivation to solve the problems that would really matter for patients. I remember the occasion...

Yes, again I agree this misses the point. Being a scientist is just being someone who is interested in solving a problem and in thinking clearly. 'Lay' members on ethics committees and such like have been around for decades and done important work. The internet has probably contributed in...

Nor I. Some members of online communities pushed this angle but it was not what made the difference to NICE and not what dominated the discussion on this forum.

I can access it via UCL. Unfortunately the paper seems to be an extended snowstorm of poor evidence (which is what to expect from this journal by the way). I note the following statement: These findings, and the observation that autoantibodies targeting therapies, including immunoadsorption and...

I had never heard of him until I joined this forum and saw his Tweets. I suspect the vast majority of physicians have never heard of him. Amongst BPS enthusiasts he may be well enough known, but he may just be someone who Tweets support for the big showmen - I don't know.

I am not sure that anything unnoticed is being reported here. Without appearing to be biased I would note that this is a review published in a journal nobody has ever heard of from some people in Morocco. We have known that platelets are involved in signalling at least since I took an interest...

I am not aware that there is any knowledge to share. I have heard reports like this from social contacts. Carson is clearly very good at playing the listening role. But several months later the emptiness and hypocrisy of it tend to dawn. For those who were going to get better he will score well...

How did Eric Topol suddenly become a leading expert of Long Covid since nobody knows anything about it? Or Iwasaki or Putrino for that matter? And what is all this research on ME to build on that Vogel is talking about? It is good to see the BPS approach being ridiculed but I don't think it...

I am afraid I never took much interest in ferritin. It mostly seemed to be a red herring, other than in the context of haemochromatosis. Other things more directly reflect inflammation.

I think this paper IS disinformation. The whole tone is much too presumptive that we know something is going on when the reality is that a few groups have reported non-replicated findings. I see no difference between this and telling people they have craniocervical instability or EDS or...

This seems to be an interesting finding. However, I see that the subjects were overweight or obese. Metformin is used in people who are overweight with diabetes to modify sugar metabolism if I remember rightly. If it had a beneficial effect on a pre-diabetic state that made people feel generally...

It could but in the long term many people eventually get a loss of immune defences - maybe 5-10% will develop a condition that lowers resistance, such as diabetes. So we would expect 5-10% of PWME to eventually suffer from overt infection with the hidden agent. An analogy would be herpes...

One reason why I doubt hidden microbes are involved is that if they were I would expect at least an occasional case where the microbe showed itself in terms of 'winning' rather than just hiding away causing a nuisance. Most hidden infections can become overt in people who for some other reason...

Have you ever been involved in this process @rvallee? As you know, I have. I have done pilot studies and larger follow-on studies. At each stage you have to do a study that is capable of producing a meaningful result. This study, much like PACE, was incapable of producing a meaningful result. So...

I have tried to make sense of the figures giving the results. Other than the fact that they seem to show lots of people improving over time I cannot make anything of them. This seems like a study done by people who think they are doing a trial but have no understanding of how trials are done...

I have not seen a scale like that before. As you say it looks vague and confusing. I cannot think that the 7 grades are justified. More commonly people use about 3-4 - same, a bit better, much better, and yes should include worse.

I guess I didn't answer those questions because I don't know the answers. To the first: maybe not. To the second, maybe, but it is hard to think what would lie behind a persistent signalling problem without showing itself some there way.

You can do without a control group for a very well documented disease at times. But for this situation a study without a control is worthless. There is no justification in recruiting numbers like this if the study tells us nothing and the treatment is potentially hazardous. I still do not...

My guess is that the important thing is to find a GP that listens. I don't think you can get that from emailing practices with queries. What my wife would do (she is much better at this than I) is to wander into a few shops which don't look very busy - maybe charity shops, independent chemists...

It seems that 'trained immunity' was invented after I retired - in 2011 - by some people working in a company called Trained Therapeutix. The Wikipedia entry does not fill me with any enthusiasm.