Search results

To me this crystallises the widespread error in what people think they want. They think they want 'Long Covid Services'. What they should really want is for Long Covid to be treated like any other real illness - in standard medical clinics. The identification of the problems of rehab and the...

I have not heard of any link betwen Sjogren's and dysautonomia but 'Sjogren's' is treated by some as one of those categories that can spread out in to almost anything. I think it becomes largely meaningless at that point.

Google says: RED Clinic has changed names, and is now Ameliekliniken. RED clinic rings very bad bells for some reason.

That's Nancy Klimas's unit that presumably was hosting the seminar but I was referring to the clinic set up by the guy presenting.

Is this a commercial clinic? The presentation sounds very confused. I have not heard of Post-viral immuno-metabolic disease, nor how it might have anything to do with autoimmunity!

That sounds a bit like Hirschsprung's disease with ganglionic agenesis (rather than diarrhoea in the Shy-Drager picture). Clearly this is a complicated field. I think the simple point is that people with ME/CFS don't really have generalised dysautonomia - of whatever sort.

Yes, I just see this as normalising the communication and learning pathways for everyone in line with other 'real' diseases.

I don't think there is any suggestion that people with ME/CFS have these symptoms. As Nightsong has pointed out, the picture of 'POTS' is not actually dysautonomia in this sense. In POTS the autonomic nervous system seems to be working - in responding to standing with tachycardia. My memory is...

I don't see any problem with a GP making a provisional, or definitive, diagnosis. The suggested model is for a referral service for people who need one. It wouldn't preclude a GP managing the problem if they were confident in doing so. It would just mean that if the person was referred on it...

I suspect that SequenceME just wouldn't fit into this multi-group template.

Thanks, and yes, that is how I see it. I think there will be major resistance from a DHSC committed to a primary care emphasis in addition to the specific vested interests. An unknown for me is how advocacy groups and charities will view it. Some might argue that we should not get rid of...

There is no harm in getting more data but when I have reviewed grants on more omics I have looked for new approaches or techniques that are presented as pivotal to success. We are not given any specific here. Big samples run into the probem of statistically significant findings due to low level...

The trouble is that we have no idea what these 'immune complexes' are. We spent a three decades in the 1960s-1980s trying to make sense of immune complexes in diseases where we are pretty sure they are crucial and it was never possible to make much of the findings. A real life immune complex is...

Somewhere with a good rationale. genetic leads look more promising to me at present.

That sounds worryingly like a global fishing exercise from ground zero.

Is there any information on what will be studied?

I have put my most recent suggestion on the first post. I have tried to respond to all the comments. I may re-work the rationale for hospital based service a bit more.

Done

Is that the purple book?

Good points. I will do some more tweaking.