--you're in England, if I am correct; are there few/no organized support groups for various conditions there?

We have many of these in the United States, often coordinated by organizations involved in advocacy or fundraising for research into the conditions, and/or by hospital and health care systems. Yes, sometimes there are agendas with these in addition to the support function--I suspect a lot of medical centers here use these groups as a way to recruit patients, but even that can be positive if people get expert care they might not have before, and/or they can have access to clinical trials.

In the US, many of the neuropathy support groups were coordinated by The Neuropathy Association; since that is now defunct many are now coordinated through the Foundation for Peripheral Neuropathy. But there are many others affiliated with medical centers, there is a Southern California Neuropathy Association that involves many, many support groups in that state. And the Guillian Barre Syndrome/CIDP Foundation has their own far flung support groups, as does the Multiple Sclerosis Association of America, and various others.

I admit I don't know much about how such things are organized across the pond, but it's hard to imagine there aren't any patient support groups somewhere.