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No. Having read what a lot of these 'ME/CFS clinicians' write I have very little faith in them knowing what they are talking about. I worked in an area of medicine where ideas on pathogenesis and treatment were based on careful research and evidence gathering. When I got interested in ME/CFS it...

I remain confused by this, @MelbME. The diagnostic problem is not differentiating ME/CFS from conditions that often occur with it. It is differentiating it from conditions that can be confused with it. If another condition is co-morbid with ME/CFS in an individual then they still have ME/CFS. A...

Chris P's concern is valid as a general response to people asking 'why not test this...' But my sense is that if we take the 8 regions to be valid linkages then interrogating an early onset subset for these 8 regions and looking for differences or similarities in the degree of linkage (rather...

The risk factors just increase the level of chance occurrence at any time. Just as the number of units of alcohol you drink or the number of days of sunbathing raises the chance of a mutation occurring in a cell that leads to cancer. There is no temporal trigger for that, which is what we are...

I wouldn't put much store by any of those to be honest. ME/CFS is disinformation central, as you know. I don't think we have any meaningful data papers that address non-infective triggers.

I haven't noticed doctors and researchers agreeing on that! And to be honest, doctors and researchers involved with ME/CFS tend to agree on all sorts of stuff without good reason.

I think part of the problem may be that a lot of people assume that there must be a trigger. People always look for causes. But a lot of disease causation is stochastic - there may be no trigger. The disease process may have a natural tendency to engage at random times. That is almost certainly...

I agree. I did a video interview for Portugal Millions Missing for Joan Hoffman on Tuesday. We spent quite a bit of the time talking about these problems. I suggested everyone joined S4ME.

I think there are reasons for thinking that chldhood onset asthma may have a very different origin from adult onset. It is a long time since I heard anything about it but that was my impression. For ME/CFS we tend to assume the same mechanism I guess, even if there seem to be two age peaks. But...

Yes, there is a lot of good material but also it buys in to biomedical folklore that is best avoided. I think we try to achieve something a bit different - a realistic appraisal of what is known.

I guess that there is another potential way to argue around the statistical Catch22 that comes with more analyses. You might be able to argue that if the 8 DNA segments identified are robust genetic markers then they ought to show up at least as strongly for very early onset cases, if not more...

I have discussed this with Chris. His problem is that the more post-hoc analyses of the DecodeME dataset that are done, the less statistical validity you have. On the other hand, I would personally like to see someone do the necessary math (that is all you need) on data accessed from DecodeME...

This makes sense to me. What you describe may be similar to @InitialConditions. I have seen pictures like that on several occasions posted by people with ME/CFS. The colour change and blanching are not normal under normal room conditions. What is unclear is whether this is an unusual occurrence...

I never found a competent haematologist who took it seriously. The fact that nothing further seems to have been published by other groups suggests that it will just quietly disappear. If it was real a commercial microclot test would have become routine and profitable by now. There are also some...

It is high time the MEAA and its members faced up to the fact that pushing for services that may be worse than useless is not in patients' interests. The article mentins that delayed diagnosis and treatment is asociated with poor outcome. Who knows what that means. But it is obvious that any...

It seems that they more or less are, but that also implies that hEDS is not a form of EDS (not the hypermobile subset of EDS). The problem is then that HSD includes symptoms as a defining feature - so that it is not simply having different connective tissue. This makes it unworkable as a...

To be honest I don't think my veins have become more prominent with age. This is equally normal for someone aged 30. It depends on the ambient temperature an dposition and so on but those are normal vein contours.

We did ask Sarah Tyson, on a thread here. She was dismissive of all queries and ended up being openly abusive about people with ME/CFS in general. I raised this with Charles Shepherd but he defended her, which, in view of what she wrote, was quite extraordinary. We got no straight answers then...

So that is clear then. It is designed to justify unfounded treatments. I wouldn't waste time on it.

Another thing that worries me is that there seems to be an assumption that there are definable number of 'diseases' each with a causal pathway that may include certain measurable chemical variables. I think it more likely that what we call diseases are the tips of icebergs with vast stretches of...