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It may be difficult because, as Trish says, there is so much muddled thinking everywhere. But the first thing I would say is that 'the literature' on MCAS and hEDS is by and large fringe pseudoscience put about by physicians who make a living out of giving people these labels. MCAS may be a...

Yeah but nobody knows what. And if you seek hard enough you will find all sorts of made up stuff. At some point everyone involved has to stop and think whether they really believe what is being sold them. I appreciate that the medical profession have got this wrong, but I think more in terms of...

Thanks, yes it is softened in a few ways, but I still think problematic.

It looks to me as if someone has twigged to the potentially very serious issue of Dr Kane being seen to be treating children without paediatric training. A paediatric cardiologist has agreed to take the responsibility. I think this may be an uncomfortable ride for some for a while. Has the rest...

EDS is a group of monogenic genetic diseases, most of which we know the gene for and are easily tested for. There are 13 main types. Type 3 was assigned to people with hypermobility and nothing much else in the days when the genes were not known. It turns out that very few people with just...

I think that is fair. So I guess that my conclusion that there is an urgent need for some sort of consensus amongst the medical profession, in the document I hope shortly to publish, makes sense. It seems to be whack-a-Groundhog Day all over again , if that isn't double tautology. The only...

There is no excuse for such ridicule. But I can see why doctors would get fed up with patients claiming to have MTHFR mutations and this and this and this... They will have been told that by a private practitioner, very likely of some quasi-medical camp like Functional Physician or Naturopath...

I agree. My concern is that the reference to untested treatments will make it only too easy for health professionals to say to themselves - 'Uh-huh, so another of those false belief situations'. The journalist presumably thinks that they are championing the case of people with LC but they may...

I think there may be quite significant repercussions for Dr Kane over this. Giving untested anticoagulant therapy to children outside formal trials seems to me unjustifiable. We need to stick to evidence.

Seems a bit of a rag-bag of 'noble thoughts' to me, mixed with a good dose of the usual guff about multidisciplinary teams. The heart is in roughly the right place but I prefer my scepticism in the form of straight 'grappa' rather than aperol spritz.

I think, @PeterW , if you got people to work in an experimental pathology lab for a week you would find that a lot more than just vegans would be appalled by the inhumanity of it. I personally could not stomach doing experiments in the end. I eat free range chicken and fish but not red meat, for...

I don't really see the connection. Like CD20, CD38 is just a useful ligand for identifying cells for antibody-mediated killing. If you kill lots of plasma cells you end up with no antibody production but not much effect on the rest of the body as far as I know. I see that CD38 seems to be a...

Not from my experience. There are about 100 different ways of 'reproducing' rheumatoid arthritis in rodents. But they told us nothing. The fact that you get arthritis after shoving avast quantity of tubercle bacteria into a paw tells us nothing about a human disease where that didn't happen...

Not really. Changes in numbers of cells in the blood and such things are of no significance in the short term. It is a bit like saying that the lack of traffic in the middle of the day indicate people are not working - it is an irrelevance. Cells move in different ways after a stimulus. I had...

I don't think you can take energy away from the immune system in any meaningful sense. If anything repair signals would activate cells. There seems to be pretty good negative evidence for persistence of any initiating microbe in ME/CFS. Also there is no good evidence for reactivation of...

Yes, I think the 40-60 figure is misleading. It needs to be clear whether this is onset or total sufferers (prevalence). Onset is earlier. The figure is unlikely to be a reliable guide to prevalence. So it just confuses.

Yeah well you needn't put it like that need you! What about 'I consulted a large patient community website and concluded that a much more egalitarian and co-operative approach to gathering information would be to not make use of the stressful and artificial format of a video interview and...

I agree this is a very good summary. Probably best not to include expert names. The list given includes some people who say very misleading things at times.

I am not sure that I have any confidence that a 'care and support plan' is of any use other than as a tool for healthcare professionals to manipulate the situation. I never gave patients a care and support plan, I just explained what I thought might help based on reliable evidence. Plans change...

I actually wonder whether you might not get more useful information @Ellen by just asking your questions openly to the forum so that people can give their views on them as and when they like without any pressure. I think you are likely to get a much more balanced view that way and it would be...