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I am not surprised that they did not tell the world. Enbrel is hugely expensive, causes serious side effects including disseminated tuberculosis and death and a high proportion of people become resistant to it over a fairly short period. It sounds like one of the more sensible decisions from a...

I have only looked at the abstract but I don't follow how you can have OI lying down if 'orthostatic' means standing up. Interesting that they say that orthostatic tachycardia does not account for OI symptoms.

Dear @Hip I have watched those videos but so far I can see no reason to think they are relevant to PWME. We have so far not a single medically or scientifically trained person suggesting there is a relation between ME and CCI as far as I know. We simply have some personal stories from patients...

Yes but as I explained there would be bone erosion or displacement in that case. TB can certainly do it but as my chief used to say even a policeman could see the x-ray was wrong.

My advice is only to use animals to study the normal rules of physiology and physiological responses. If you want to study causation of disease they are pretty much valueless.

No problem. Do it in triplicate. Then biopsy.

As far as I know there is a spectrum of joint laxity without any clear indication that at any point it becomes a specific disorder. Just as being tall leads to bumping your head more often but there is no specific tallness disease. The definition of joint hypermobility syndrome was always...

Nope. I set up the use of rituximab for autoimmunity and I went nowhere near an animal model. There was no point because there are no animal models of spontaneous human autoimmunity of much use. There are none for rheumatoid arthritis. Animals are very useful for working out normal physiology...

I think this is fairly typical of people who get things like recurrent shoulder dislocation. Things start around puberty. I suspect that simply reflects the increased leverage on joints at the pubertal growth spurt. Younger children are a rounder shape and survive all sorts of forces...

I am interested to know at what age you were diagnosed as hEDS @Michelle? What is a special ED PE class?

That is because it is not remodelling bone and it is bone that shows on an x-ray! If inflammation remodels bone it will show on an x-ray. Acquired CCI due to inflammation has to work through remodelling of bone or ligament. If the remodelling is purely ligament then it will only lead to...

What one might call semantic finesse, or finesse semantique?

I am still worried that tests like this feel us about the symptom of PEM, which is present even before trying to exercise. What @Snow Leopard says sounds like a good detailed analysis but I am not familiar enough with the practicalities to be sure I fully understand the implications.

But @Keela Too did put it in quotes - "placebo effect" so she was absolutely correct. Just as one might say, and Noam Chomsky did, that the "mind-body problem" has in fact been a body-body problem since Newton's theory of gravitation. "Placebo effect" is all too often used to include regression...

I think that is the key question @Kitty. For historical reasons a myth has grown up that there is a condition called EDSIII or hEDS but the evidence for that does not exist. There is no doubt that there are lots of people with mobile joints. There is also no doubt that some get recurrent...

Der @Annamaria None of those arguments are actually relevant to the points people have been making. We are all aware that a number of causal factors contribute to the eradication o of disease. You are entitled to your view but it does not seem to me to be based on sound evidence. Vaccines are...

Yes, it might make sense.

If it did then it would show on x-ray and it doesn't. It is a bit like suggesting that PWME have trouble walking because they have broken legs. They don't.

If EDS is not associated with ME then the process of diagnosing EDS is the same for everybody - picked up by its clinical features. In terms of looking for whether there is an association, I think the depends on using cohorts without expectation bias and that is really the main thrust of...

That seems unfortunate.