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Yes, the quote from Maugeri is what we all know for RA. But that is not relevant. Physicians have looked after thousands and thousands of RA patients with cervical problems of all levels of severity and when they have symptoms they are not in any way confusable with ME. They fit with the...

I know. This is part of the problem. I am sorry to say that PWME have been served badly in that a number of physicians who have moved in to the field are pretty uncritical about what they believe in. I never practiced in the field and when I started getting involved in the ME research scene I...

The puzzle for me is why people should want to keep trying to find reasons for thinking CCI might be important in ME when we have absolutely no published evidence of any value that indicates that. The onus is on people developing such ideas to present some evidence in support. It would not...

Yes, I think that list could be added to the names I gave. The reason the surgeons' list looks like ME is because Henderson has invented this syndrome that sounds like ME which he says is due to CCI, but those of us who have looked after CCI for years have never come across anything remotely...

As I pointed out somewhere Rodney Grahame and I set up the first hypermobility research clinic in the UK in around 1980. I have known Rodney as a departmental colleague for many years. He would like to think he understands hypermobility but the problem is that he has never done any valid...

It depends a bit on whether the emphasis is on MCAS or EDS or POTS or whatever but the physicians who appear to me to be uncritical about these so called associations include: Dr Peter Rowe Dr Rodney Grahame Dr Alan Hakim Dr William Weir Dr Lawrence Afrin Dr Olli Polo Dr Hans Knoop Dr Peter...

The problem with this is that it allows the surgeons to sidestep any suggestion that they are operating on imaging that does not mean much. They so, oh but what matters most are the symptoms. That is absolutely true if they really are symptoms of CCI but symptoms of CCI are quite distinct from...

I don't think the mechanics work that way at all to be honest. The problem with all this EDS theorising is that you can think up whatever possible mechanism you like but unless in reality it applies to the human body it is of no interest. The two ball and socket joints have completely different...

What probably exists is a very small group of people with a Mendelian trait that predominantly produces hypermobility. 'hEDS' is a concept defined by a committee of people who are not by and large geneticists and is defined by criteria that have no genetic basis. I suspect that geneticists would...

My belief is primary based on reading the literature on classification and knowing the people who have been involved in creating this diagnosis over the last few decades. I co-authored one of the first papers putatively linking hypermobility to other problems and as part of that I learned that...

Birthday surprise.

It certainly seems garbled. None of the arguments follow.

Hang on a minute - are we sure anyone should be going back to normal. I see precious little evidence of us being 'over the hump'.

How we we deal with the person who has had a stroke and also has ME? Presumably the deficits need to be reasonably ascribable to ME and there has to be a way to nullify any scoring due to the stroke?

I don't want to measure anything, Graham. I am even more extreme than you. I have no interest in statistics. But I do think it is legitimate for people to ask for a formal test to show that two populations in a controlled trial are different, even if what is MORE important is the nature the...

I am wondering how you see the statistical analysis implications of the score system Graham? I guess that since going up from 5 to 7 is not equal to 7 to 9 you abolish any reference to means or parametric analysis? I would like to see data on how many people went up or down one, two or three...

it looks a good system and I like the mathematical basis (somewhat Leibnizian, a non-quantitative series). The idea of doing normally is also nice - if, as I understand, it means 'without using up spoons' or genuinely no cost. I wondered if there were too many lengths of walking but for me the...

I get confused with all these threads. That sounded like King's College syndrome but then I realised that is 2 star people with 5 star ambitions.

That sounds right. Perhaps Hamonet is the Grahame of France I am not quite sure what is implied there. Kinesiophobia is clearly not the cause of a genetic laxity of tissues. Whether or not hEDS is Mendelian one has to assume it is limited to genetic states. Tissues do not get lax secondarily...

It depends on what sort of 'EDS clinic'. Clinics run by geneticists see tiny numbers of people with Mendelian genetic disorders who are mostly referred because of problems in other organ systems. On the other hand 'hypermobility' or now 'hEDS clinics see mostly people who have pain or fatigue...