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.