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I didn't bother to listen for more than 30 seconds. This is a caricature of the 'physio as pseudo-expert' phenomenon where physios spout off about physiology that they understand nothing whatever about. It could be a Monty Python sketch, or even Michael Bentine. This is why you cannot afford to...

For me the problem is confusing true monogenic EDS with a pure H presentation - for which some (one per person) genes have been found but not many - and the modren idea of 'hEDS' which is just hypermobility as far as I can see. I cannot see any reason to classify people as hEDS. Hypermobility is...

As originally defined the hypermobile type of EDS was just extreme hypermobility so there is nothing more to predispose to. It was defined as not bing multisytem. ROdnay Graham, Anne Gabell and I wrote a paper purporting to smash this claim by shoing that they had mitral valve prolapse. There...

But if this is a polygenic phenomenon then there will be no 'syndrome' because the morbidities and prognoses will be different for evey individual case. hEDS will turn out to have been an arbitrary and spurious category. Even hypermobility, as per Beighton, was always known to be a spurious...

I am not sure why they just used family controls. Presumably it avoids population ethnic variation problems at least to some extent but it is hard to know how these figures would compare with. general population. The hEDS probands seem to have lots of rare variants - more than one each - so...

Did any members attend? Apart from Ponting the names of speakers don't excite me that much. It would have been good to meet Rob Wüst, but I didn't get a ticket.

And these are not 'responders', merely people who improved subsequent to treatment!

Yup, that was my thought.

I always wonder about this. It may depend a lot on cultural and financial contexts. But I sense that people put far too much store in diagnostic labels. They matter for financial benefits but otherwise I am doubtful. I may be unusual being a medic, brought up as a child in a medical household...

I don't know of evidence of reduction in CD38 expression in plasma cell clones follwoing treatment. It would surprise me a bit. There might be selection by survival for lower expressing clones but presumably relapse would be due to new clones not yet exposed to selection?

I think this is a bit different. I have met Uta Frith and I think she may be a bit of a self-appointed oracle on autism but much of what she has said is well founded in very extensive experience. I think she is concerned about how wide a useful category can be taken before it ceases to be useful...

I think so. I have sent the file I edit on my desktop, which should have been re-uploaded every time but might be one step ahead. Is there a reason for asking?

I think the word "regular" in the draft is probably not ideal. 'Ongoing' might be better. The rest of the text indicates that timing is up to patients and professionals to judge.

There is certainly a problem with documentation but there have been a good number of physicians who have written about ME/CFS who have definitely had experience with severe and very severe cases. Over a period of 70 years at least we have seen no documentation of localising signs such as...

To be honest I don't think any of this lumping of diseases makes sense. I doubt there is any relation between POTS and EDS, or between EDS and ME/CFS. Remember that EDS is at least a dozen different genetic disorders, which are unlikely to share any particular associations much. And I suspect...

Could be interesting. But it's my bedtime for tonight.

I have never been able to move a small patch under my chin;). I guess this is something else.

On a brief look through the paper I did not see any specific genetics. It seems odd to lump together a whole range of different genetic disorders of collagen and related proteins and use one mouse model of one particular defect. I am not sure why all these different defects should affect...

That would be intriguing since we have been discussing the relation of ME/CFS to narcolepsy. The odd thing is that cataplexy is usually brought on by pleasant surprise (not by nasty surprise). It seems to be triggered by some very specific events associated with emotion signalling, maybe insula...

Well, I suppose the simplest one is epilepsy, where brain signal problems can be brought under control. Parkinson's disease would be another maybe. Narcolepsy...