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I don't think it is fair to criticise doctors for 'not recognising MCAS' when the great majority of the medical profession don't think there is enough to make the name useful - as I have indicated. I think doctors should take symptoms seriously and take note of skin or lung problems due to mast...

I think MCAS is not thought of as allergy because that makes it a 'new disease' that Dr Afrin can be an expert on. Hardly anyone except Dr Afrin actually produces literature on this. Mast cells are commonly activated in allergy (urticaria, asthma, angioedema) through IgE antibodies but they are...

There was a picture in Evening Standard showing Boris trying to jog with personal trainer looking very miserable. I actually thought that it looked pretty dangerous. Trying to lose weight by eating less is perfectly sensible and exercising is a good idea IF YOU ARE WELL, but exercising hard...

That's with the horses is it?

It is even more basic than that. We need to see some evidence that there are any abnormalities. So far I have seen none on images put on the web. (Other than some pictures of fairly usual cervical spine disc disease of a sort that lots of older people have and which in any case would not affect...

He started a thread and said he agreed.

yup

Bjorn Bragee has been contacted and responded.

There are a lot of 'credible' doctors in the USA, and maybe elsewhere who believe in nonsense because it sells. It is a quack diagnosis because it doesn't actually mean anything. Normal people have mast cells and they get activated and we know what that looks like. There is no pathological...

Until quite recently I thin this was a reasonable assumption on the basis that over the decades most countries have gradually moved to a more rational and responsible approach to health. Unfortunately in the last four or so years there have been signs that things are moving rapidly in the...

And the only food plant of the larvae of the wonderful and common cinnabar moth.

The point is that is all the respected experts on ME stood up and said this is nonsense then I strongly suspect that the whole thing would dry up. Instead we seem to have so-called experts jollying things along. The idea of contacting the surgeons is silly - these people will do what they want -...

Yes, this is the motivation. The size of the problem is secondary. However, this is not a small problem. Hundreds and maybe thousands of children and adults are seeking advice on spinal surgery for essentially ME symptoms in the UK from rheumatologists and paediatricians. All the colleagues I...

Absolutely none. Mast cell activation syndrome does not exist in any meaningful sense. It is another quack diagnosis almost all of the time. It has been sold by a physician in the States called Lawrence Afrin who is to my mind very unconvincing in his lecture videos. Viral infections have very...

At least a hundred of us pre-COVID, viral onset ME patients have gotten CCI diagnoses. It’s pretty incredible what mast cell-mediated connective tissue damage can do! There you are. Complete rubbish. Total pseudoscience. It needs shouting from the rooftops by those who are seen as the experts...

I actually think, re-reading, that my request was perfectly clear and on target. People will misconstrue it. I guess that also tells us something. But the reality is that there are absolutely no plausible links between ME and brain stem compression. At least no more than between ME and having...

The list is not intended to include pure science researchers like Ponting who would not want to express an opinion because it is nowhere near their field of knowledge. I have included some non-physicians, yes, but they tend to be people who actively promote theories of causation of ME and form...

Like who? Even JenB had to have more operations didn't;t she? And she had previously been cured by antivirals and avoiding mould. More importantly we have no way of knowing that the surgery did the curing. That is why we have S4ME, because we want reliable evidence based on adequately controlled...

Yes, that gives us their view on the possibility of spinal problems being relevant. I think they are fence-sitting a bit but I MvE is making sensible points. But this is not the issue I am asking them to comment on - which is that of material being put out that I believe is unwarranted and...

I know Roger very well. A sensible guy but I am not surprised that he has swallowed the BS. A more successful approach is to identify a level of exercise that the patient can tolerate, without causing prolonged pain or exhaustion, and use this as a baseline from which to progress. Simple ways...