Real data don't come from retrospective compiling of medical records. And if this person is not an academic and not doing any serious research there isn't much reason to take their claims seriously. As I say, they are claims I have heard trotted out by physicians for years - but there are never...
I am aware that some physicians call themselves neurogastroenterologists.
Some of them may know what they are doing but a number of 'eminent' ones in London seem pretty fringe to me, with large private practices.
They are very much part of a brigade, even if that isn't the way things were presented. I have heard this story of clinicians, and yes gastroenterologists commonly get onto this bandwagon, discovering this associations between 'EDS', 'POTS', gastroptosis and goodness knows what for at least 15...
The gastroptosis has always been considered quackery and I doubt it has changed. The stomach does not 'fall down' because it is full of food. The abdomen is a bit like a bag full of wet fish - one being the stomach. The stomach does not fall down any more than any of the other bit any more than...
I absolutely disagree. Science isn't about millions of dollars. It is about being very clear about reasoning and astute observation. S4ME is quite capable of changing the lives of people with ME/CFS. I am serious. There is enough intelligence here to solve the problem with just one lead from a...
That applies to third rate academics - which may be the majority but they are irrelevant. The people who actually get things done l one critique. It sharpens the arguments.
As an academic I would pile on the pressure and criticism. I don't see a lot of point in setting up drug studies if nobody...
We keep telling the patients that it's biopsychosocial but they keep thinking its piobysoscholial.
Why can't they just get on with doing what they're told?
I wonder why anyone would want to publish in J Autoimmunity, which has been regarded as the dross of clinical immunology. It is not as if this is even an autoimmune disease, although they make passing mention of autoantibodies.
To get my interest up in reading a paper I need the abstract toggle...
I can't really follow what you are saying there.
6 months is much too short to judge reset. It is more like 5-8 years. Relapse with heavy duty immunoablation tends to come in over five years. With rituximab it continues for up to 8 years.
To be reasonably convinced of some resets I would like...
I am not sure that tests for IgE are reliable enough to make that sort of negative statement. You would need to be sure you knew the precise antigen and have a good IgE assay for it. My understanding is that allergy tests are pretty unreliable.
But if there is no evidence for an allergic...
The point I am making has nothing to do with overall credibility. It is a matter of what I was entitled to claim as an outside observer being interviewed by journalists. The journalists already had a first hand story of people reporting being worse after LP. I could not add anything to that. But...
But I personally do not have any special evidence about any of that. About the pacing either.
I think I do have proof people felt humiliated - because it is not credible for there to be a coincidence with humiliation whereas there is for 'physical worsening'.
I have to be very careful to stick...
I don't doubt that people think they were made worse by LP but I don't have proof.
Simply because we have no physical proof of anything going on in ME/CFS.
You might say we have no proof of people being humiliated but the link there is easier to be sure of. It doesn't really make sense for it to...
I didn't really see that as the weak point, David.
I was disappointed that Rachel Schraer did not seem to understand when I said that LP made people with ME/CFS feel worthless. It sort of went like water off a duck's back. She didn't seem to see the human side of the problem.
I have no proof...
I agree that there is a big problem here.
Being an 'honest broker' actually requires an awful lot of careful research. Which is what scientists are supposed to do and the last thing they are supposed to do is try to give 'balance'. Balance is in a sense a laziness - an inability to present the...
That may well be so but it depends on the pre-assumption of 'FND' or 'fibromyalgia', which are much the same diagnosis in this context.
When I was a rheumatologist I was happy to see anyone who had pain or similar symptoms. I saw it as my duty to try to analyse and provide advice on any...
Er no, these results are enough to say that there is no point in this approach.
The result is negative.
If it was of any important the p values would be much lower.
They may assume that something else will bring back autoreactive B cells. Most immunologists do.
The problem with one or two relapses is that the clinical experiment is unlikely ever to be quite as clean as testing the theory needs. But if relapse is inevitable even with complete clearance of B...
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