Search results

This looks very much like the BACME approach - pigeonholing without any understanding.

There is no way I am going to register for something like this and get Spammed more than ever.

There is Bob Souhami's comment in: https://www.bmj.com/content/bmj/333/7582/1321.full.pdf using 'functional' as if it meant something other than ignorance. A bit off topic but I remember a conversation with Lynne Turner Stokes in which she claimed that 'functional MRI' meant imaging someone...

This is ridiculous. There are no 'sound biochemical principles' here. I am seriously disappointed. I would like to see a recognition of just how harmful this sort of muddled thinking is in terms of ever getting a reasonable deal for PWME/CFS.

Sorry @nataliezzz, but I have lost interest in this completely.

This is a major red flag. EDS should have equal sex ratio or in some cases male predominance. Recruitment online is also a red flag. Sorry, but I cannot get excited about the relevance of any of this.

I understand your concern. The problem is to know what tests to do. There are no useful tests for ME/CFS. Tests to pick up other things may well be a good idea but which things do you look for? Doctors are not good at this situation - you are absolutely right there. But the problem is more that...

No, that does not follow at all. These things are complicated. Cytokines do not generally cause cancer. These things are complicated. Anyone who claims to be an expert here is generally a quack. We know very litlle. But, believe me, the forum members are trying their best to change that. It...

These were pulmonologists. The difference may simply between people who turn up at certain sorts of clinics and people chosen because they are exceptionally healthy. I didn't check to see what sort of blinding there was but I bet it was inadequate.

OK, so it looks as if they do not understand the depth of the problem. I cannot get interested in this if so.

I have read through much of the paper. The highlighting of the dangerous policy of denying feeding support is laudable but the rest of the paper is largely a rambling re-write of the uncritical 'biomedical' advocacy position that throws in a lot of stuff of poor quality. There is emphasis on...

I doubt that anybody knows the answer to that. These are not basic tests in the context of ME/CFS because they do not as far as we know provide any reliable prognostic information. There is no general agreement even between research studies about whether ME/CFS is associated with a raised...

It is a long time ago but when I wrote a paper claiming to find internal organ involvement in BHS aka EDS III (mitral valve prolapse) this was supposed to be an entirely new finding because BHS/EDSIII was supposed to be defined as not having visceral involvement. The paper's claim was invalid...

Which it is. And if the authors have not spelled that out very clearly, indicating they themselves know what a muddle it is, then I wouldn't take much notice of the findings. They are likely to reflect enthusiasm for memes rather than any useful biology.

Join the club. The problem is very complicated but 'hEDS' as now popularly defined is not hypermobility type EDS as originally conceived at all. Ehlers and Danlos probably thought they were describing one syndrome but with a tight family pedigree indicating a monogenic problem. It became clear...

I don't think anyone has said that here. A link with widespread pain would be plausible. It is just that the population studies that have been done tend to indicate that it is not the case. Medicine has to be based on data, not what might be plausible. Most studies of associations of this sort...

I only have a moment to post but my answer to the question is that when we looked into 'gastroparesis' on a thread here we found literature suggesting that the motility tests add nothing useful to the history of symptoms. I suspect that stomachs do become immobile but I am very sceptical that...

People making up criteria is not data. Anyone can make up whatever criteria they like. This bit has nothing to do with being outside anything - we just have no facts. The first bit of data would be a reliable estimate of prevalence. For hEDS I have seen estimates of anything from 1 in 50 to 1...

But what leads you to make these claims? There is n MCAS consensus other than in a small community of enthusiasts. The rest of medical academia cannot work out what it is all about. Rigorous peer review doesn't really exist any more and as far as I know there have been no real data to review...

So why, after the fifty years that these concepts have been peddled in one form or another, do we have no data? No meaningful epidemiology and no reliable drug trials as far as I know. Who has been correcting, exactly? I see the opposite - a proliferation of bogus concepts. And I worked in...