I am wondering if there is a way we can get some information gathering as to how our GPs are treating us after they start to think we may have Fibromyalgia or ME and again after we have a diagnosis. My sense of it is that there are some GPs who genuinely welcome information and awareness as well as input/discussion with the patient.
Example: I have had one Neurologist I was sent to for disturbing new symptoms just do a very basic exam and then tell me nothing useful, dismissing me with "No need for further testing" and "We can't do anything to help people with your illness" although he did not name 'my illness'. He then told me to keep singing (I am a former professional classical singer) and NOT TO READ ANYTHING ON THE INTERNET about my illness.
I find this shocking, but essentially have had nothing of much use from any of them except pain meds that help me sleep a bit most nights but don't help much with the pain, and my very kind trainee doctor who visited me until she moved on to a permanent job.
There is no way to find out if doctors in our local area would be open to having a new patient with one of these illnesses and would attempt to help us. Everywhere I connect with sufferers online, I hear stories of people who are left on their own without any significant medical treatment at all, or who just stopped trying after they were brushed off or treated disrespectfully.
I think it's important to find a way to have a voice about what we are experiencing in terms of discrimination and denial of treatment, ignorance and disinterest, and lack of options except the CBT/GET ones. Is there some kind of group action we can take that will get attention. I know the Countess of Mar is trying in Parliament, but they don't seem to be taking much notice, and education of doctors in the UK about these illnesses seems to be nil.