Please feel free to move this post to another more appropriate forum heading if appropriate.
I am in the UK.
I faithfully listed and described all my symptoms when I transferred to a new GP surgery about 2 years ago. This did no good. They just totally disregarded them as had the previous GP. My most serious symptoms were not addressed at all. I would bring them up and the GP would act as though she had not heard me and never answer the question except to say something occasionally like "Your tests all came back normal." or "I think this is due to an emotional problem" in the case of jerking and shaking when pushing through exhaustion as she had advised me to do, or collapsing onto my kitchen floor when i was trying to get something to eat after having been up out of bed to walk a bit every hour in my flat.
At first, in the new surgery, I was treated by a caring but ineffective trainee doctor who I am sure from the way things played out, must have had to keep checking with her mentor, the senior doctor of the practice, for the first several months at my GP surgery. i was ignored completely and then assigned to another doctor when she left for a permanent job. She had seen me at home, but now I was not offered this service. After several calls to the surgery by my Socisl Services Case Manager, who said they were not helpful at all, the 'assigned' new doctor showed up at my house with no warning or appointment. Her stated areas of interest are OB/GYN, neither of which I remotely need. She was rather patronising, and did not stay long, answered none of my questions. She sent a letter after that, asking me some questions and I replied after some weeks with a long letter stating clearly and in an organised way what my symptoms are, the fact that they had not been addressed, or addressed adequately, saying what I felt I needed and what the priorities were. At the end of the letter, i gave a number of links to the latest research studies, this website, and some other references, all from highly reputable sources. She then replied in a letter to me that she had discussed this will all of the other partners in the surgery and they agreed that it might be better for me to look for another surgery practice.
I am now without a doctor and have no idea how to find one in my local area who will see me at home (I am mostly bed bound) and who treats patients with this illness in an appropriate way, believing the research and current findings, statements from IOM, etc. I can't even get a proper diagnosis as the local NHS clinics are all run by a Rheumatologist and his wife along with psychologists, etc. (She does the graded exercise programme and he does research on psychological factors which supposedly impact on the 'recovery' from this illness (CFS)) He states that he will not accept Fibromyalgia patients (my only diagnosis aside from Osteoporosis) into his treatment programme, as he claims they are at the opposite end of the spectrum (whatever that is supposed to mean)
My support worker was evidently informed by the surgery of their letter to me and told something to the effect that I had not followed proper protocol by attending a diagnostic appointment with this same Rheumatologist, who has published articles and 'research' documents in which he states similar assertions to Wesselly's views about the illness, the fact that it is no longer a physical illness, but a result of wrong illness beliefs, deconditioning, etc.
I am desperate to find another GP, but there is no information provided about any of them beyond a few patient reviews on some GP surgery pages in the NHS Choices website. I have asked in some Facebook groups and on the ME Assoc website. The only reply I had there which gave any help for 'ME Friendly' doctors, was from members of the same clinic group that Rheumatologist runs.
Where can I turn now? Does anyone have ideas? I need several matters addressed.... chest pains, deterioration in general condition, fatigue and mobility over the last few years and especially the last 6 months, possible interstitial cystitis or other urinary problem, and orthostatic intolerance, as well as P.E.M. of course. These are my most severe symptoms, but I have some other questions about things that have not been addressed which could possible give some answers. I rarely even contacted doctors over the past few years, as they were so dismissive. But I can't continue without having one at all, and I often feel I'd rather die than see anyone from this practice again after they' sort of invited me to leave.
My new carer company have been very helpful and they definitely believe I am ill and in need of appropriate care. They tried to set up an advocate to be assigned to me to help with this, but we were told that due to funding cuts, the advocacy service is now only to help with particular problems (I think meaning such as disputes and the like).
Any suggestions would be very gratefully appreciated.
