Could second opinion come from someone like Dr Rowe ? ( If he could be persuaded?).
Also, have GP and Paediatrician been supplied with a copy of the international paediatric primer - this does explain that severe ME does happen to children , and clearly explains what FII actually is , and how rare it is.it also clearly states it is not a psychiatric illness.
I really feel that GMC should be called into frame, the lack of knowledge and ethics of this are shocking .
If there are the number of cases that Tymes Trust and AfME are reporting, then there are serious questions to be asked regarding medical knowledge and process for a neurological disease.
From left field ( and after the benefit of a second glass of wine) - would Jen Brea get involved ( perhaps expressing ongoing concern re the situation with children in UK )- she has already made her opinion of EC clear?
The publicity this could generate would perhaps be the most effective means of shining a wider light on current practices?
I supplied the primer some time ago, but, as I know from my own struggles as we live in the same area, that they do not take much notice of information of material supplied by either the patient or doctors of another viewpoint, even if it is based on science. For example my GP recently told me, after she was contacted by one of the PACE mob,when I subsequently mentioned the published papers of the the main scientists in the field, that the claim that ME was a physical illness was 'only their personal opinion' (!) and she disagreed with it. I have kept away ever since.
As I mentioned a while back, when trying to raise the problems of local ME people with the relevant county authority here, they told me that they would not discuss the non-existent illness ME with me or anyone and were surprisingly rude. I tried again by phone, and they slammed the phone down on me on the grounds, they said, that their boss had instructed them not to take complaints from ME patients. There had been a serious case where the vicar had died because he had become seriously ill with ME as he could not care for himself and the GPs had told him it was all in his head and they refused to sanction any care. There were many other serious complaints which I forwarded as well. The authorities would accept none of them as 'no compliant will be accepted from someone with a diagnosis of ME'
Much to my astonishment, on the Sunday, I received a phone call. The person was a member of the GMC who said she had heard of the problems and was very concerned but that she could do nothing. She said that the doctors need educating but in this area, she said they seem resistant to this and that they would rather be out on their yachts than in a lecture theatre. She told me that it is a GP' s prerogative to disbelieve in an illness if they, in their medical judgement, decided it did not exist. They generally don't do this, of course, as patients could die and they would then be held accountable. I was astonished that this was the case. This was some time ago, but the attitude seems just as much if not more ingrained now. Sadly, my 'friend' has retired from the GMC.
I am just recounting the above to illustrate that this is difficult territory.