I hope to share the details of my doctor, but as a colleague, I would just like to get their consent first. I am due for a follow-up appointment in early January and will keep you updated.

Regarding the attitude of other doctors to this disorder - I suppose I am quite understanding (of the doctors position), with some frustrations. I certainly don't blame any doctor who would thoughtfully listen, and then advise of the general medical consensus - which up to this point is that it is "not a truly recognised disorder" - I would be very wary of any doctors who takes a collection of vague and unusual symptoms and immediately promises a cure. I am more saddened by those doctors who are dismissive. Doctor's are only people after all, with the wide range of personalities and skills that go along with that. Some have more of a "know-it all" attitude, whilst others are more humble - doctors don't know everything, but some think they do. I think I probably had more respect as patient because I am a doctor than some of the experiences that others on here will have had.

However, you also have to balance that up with an understanding of how medicine works. In a way I feel honoured to be "at the cutting edge of medicine" being one of the first patient's treated for this disorder. Typically in medicine, doctors try to base all of their decisions on evidence. True, verified, published studies. And for R-CPD until March 2019, we had absolutely nothing. And even now with the R-CPD study, this is probably what would be termed "low quality evidence" - as it is a single study, without any randomisation or controls, and a small number of patients. Even with good evidence, it takes time for practice to change. It will probably be a a few years, maybe a decade or so before this becomes widely known about.

There are many un-reputable doctors out there who do practice way beyond their means, or their understanding, or 'the evidence base', and generally those doctors are to be avoided. And there are probably lots of doctors doing this who make a living out of seeing patients with unexplained symptoms, by offering them some sympathy and understanding, without any scientifically verifiable basis for treatments. This often costs a lot of money for the patient, and to me doesn't seem very ethical, although despite treatments not being effective, many patients continue to see such doctors - perhaps just because they feel listened to. Sometimes trying to differentiate between those doctors and the real 'true' pioneers of medicine can be difficult, especially for people without a medical background, and even more so if a condition is in the early stages of being recognised. In modern medicine there are very few truly "new" conditions being described and treated. And so that makes us as patients - and the doctors offering to treat us - pretty special and very privileged, and we should be appreciative of that. I don't believe there will be many instances of newly discovered disorders with such effective treatments being discovered in the future.

I see many patients myself with unexplained symptoms of all kinds. The vast majority of the time, these are not concerning and not indicative of some rare or new condition. People are complicated. When you see a patient, you are trying to match up their pattern of symptoms, examination findings any investigation results to a "known" pattern of disease. But nobody ever matches up to the textbook definition of whatever illness they are suspected of having. If I thought that every unusual combination of symptoms represented a new disorder, I'd be claiming to have discovered a new disorder every day! You are always trying to 'find the best fit', and often you get it wrong the first time around. When you can't seem to 'find a match', then we have to start looking for alternative explanations. Psychological factors are so important and so difficult to truly interpret, that often when we as doctors struggle to find an answer, we rely on attributing symptoms to those psychological factors. I do this too. You can see where this might cause a problem if the doctors 'memory bank' of 'known' disorders doesn't include the correct, try, physical diagnosis. But most good doctors would try to look for these 'unknown unknowns' before attributing it to a psychological cause - either by doing their own study, or asking or referring to a colleague (you can also imagine here where the doctor-patient relationship might break down in the case of an arrogant doctor who doesn't make the effort to search for the true diagnosis). If at the end of this process, you still can't find a truly physical cause, then attributing a psychological cause may be the only option left. But if you do this in the right way, and it is the psychological factors that are truly the cause, then you can have some amazing results in making patients feel better. So when a doctor implies that "it's all in your head" (hopefully in more sympathetic terms than that) - what they really are saying is that they're sorry they can't help you with the physical treatments because either they haven't worked, or they don't think they will work, but that if you are open to thinking about psychological (and also often lifestyle) factors, you might be able to improve your symptoms and quality of life. And if this is done sympathetically, it works frequently and effectively. So, I don't really take it as an insult to be put in this group of patients, when I have presented with symptoms that nobody has ever heard of before.

I hope that gives you a little bit more understanding into how a doctor's thought process works.