EDS, hypermobility, and the link, if any, to ME/CFS

[Jonathan Edwards]

Disease mongering is an issue, especially in pharmaceuticals. But we have been aware of it since I can recall and correcting for it all the while.

Unlike PEM, Useful rug and treatment medicines have been discovered for both MCAS and hEDS, and will continue to be so.

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 this field alongside those responsible.

 

[Jonathan Edwards]

The MCAS (and MCAD) consensus has takes place in adademic, clinical or both domain, towards consensus.

Most of the work for MCAS and hEDS here has been done here in the mainstream, rigorously peer reviewed and well replicated.

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 anyway - as I mentioned. So there was nothing to replicate.

You are entitled to your opinion on this but nothing yu have said has given me any reason to rduce my scepticism. We need hard data. There are none.

 

[hallmarkOvME]

So why, after the fifty years... do we have no data?

I keep giving you data, or leads to date, and you keep dismissing most if it as either outside of tradition, your authority, or both.

 

[Jonathan Edwards]

I keep giving you data, or leads to date, and you keep dismissing most if it as either outside of tradition, your authority, or both.

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 in 1000. A category that is that ill defined is useless. (For MCAS it is even worse, we do not seem to have any usable figures but sometimes it is 'rare' and sometimes about 1 in 10 from what I have seen. It is absurd.)

The next bit of data would be some decent trial results showing that the diagnostic concepts were of value. I see no value in the hEDS concept in that reagard anyway . I cannot think of any treatment that depends on the diagnostic category, simply on the presenting problems in the individual.

What we do have is people almost certainly having unnecessary and dangerous neck operations because they have been given this diagnosis on top of other diagnoses. And we also have children being taken into care because they or their carers or both claim they have this, always the same, bogus list of diagnoses, including hEDS and MCAS and POTS and probably dysautonomia.

I am reasonably certain that people are dying and families are being wrecked because of these invented categories. I see legal documents that I cannot discuss. It makes me very sad and angry.