Hello Laura,

Welcome to the Phoenix Forums. I see you are already a whizz with the editor, so there's hope yet...

You'll be able to learn a lot here and meet with many interesting and very knowledgeable members.

For the moment I have one piece of advice or rather two, about this:

 

 

My consultant seems very disbelieving of my symptoms and for some things, has even asked for video proof. A recent letter from him stating that he is looking to withdraw medication has left me devastated. I have another meeting with him the end of this week and my carer is insisting on coming with the intention of making him understand ‘exactly what I go through on a daily basis’. I don’t hold out much hope after reading about how others have been treated.

This will be important for you. I am not optimistic about the outcome, but that is because of what I know about England and Holland - and incidentally, I am a psychologisch with 32 years of ME. I hope for the best for you: good medical treatment, based on real medical science, and hope I am mistaken in my guess that in current England you are unlikely to get that, in case of ME/CFS.

Now your carer is quite right to insist on coming with you (though it is important to keep up the pretenses of politeness).

And personally I'd bring a recorder, openly or hidden, as the case may be, depending. But then I am tall, awful, and a very well-spoken elderly psychologist unimpressed by virtually all...

I have done both, and learned a lot from both, about people and there ways: Most are jobsworthers and conformists, alas.

Take care, take someone you trust and who can handle him/herself with you, and don't let yourself be provoked. You can always say you want to think about it - whatever they say - or want to take counsel, or find a second opinion, and will inform them later.

Best wishes,

Maarten.