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I'm with you on that one. Jo will know a lot more than most of us. Anyhow I think it is too late. I do think we need to know how these CFS dominated places work from those who are the most vulnerable. Forewarned is forearmed? I did a lot of work on the scoping meeting and went to the first...

I'm with you on that one. Jo will know a lot more than most of us. Anyhow I think it is too late. I do think we need to know how these CFS dominated places work from those who are the most vulnerable. Forewarned is forearmed? I did a lot of work on the scoping meeting and went to the first...

Like you say they are bound by lots of catch 22 mostly who is putting the money in. I don't blame them, I blame the system of not reporting harms, Doctors (not all) allowed to gaslight those who stand up to be counted but most of all not listening to the patient. They are not passive...

Like you say they are bound by lots of catch 22 mostly who is putting the money in. I don't blame them, I blame the system of not reporting harms, Doctors (not all) allowed to gaslight those who stand up to be counted but most of all not listening to the patient. They are not passive...

What happens with the children is that the treatment does not work they dismiss you or make your child attend inpatient stay. What ever the condition when you leave their care your child is counted as cured. Figures are not going to represent what actually happens if they are not truthful with...

What happens with the children is that the treatment does not work they dismiss you or make your child attend inpatient stay. What ever the condition when you leave their care your child is counted as cured. Figures are not going to represent what actually happens if they are not truthful with...

I think they are playing on the fact we will wait and see. Once the process has begun we will have no say and even if the laypeople object they will overrule as they did before. Not that we can do anything now anyhow, that time has past I feel. Luis Nacul will be used as the balance and I would...

Moderator note: This post and several following posts have been copied or moved from this thread about the NICE guideline review appointments to enable discussion of issues raised. This is how I see it pan out: All the main players are in the new or only CFS centres, all are psychological...

I have a few people coming back to me and I may know more tomorrow. Will look our for Georgetown.

I think Weir was talking about being refused because he was a private doctor.

I also think Anbu is also part of Bath, still digging so may have more info tomorrow

And there is this http://www.gosh.nhs.uk/file/7666/download?token=5NRu7f3L

I found this on Theo Anbu http://www.cfs-aktuell.de/IACFSME%20Ottawa%20reader.pdf On page 82

I appreciate the hugs and would like to share all the best soft and fluffy marshmallow ones to you all. My MP is Jo Churchill who has kindly sent me the same letter back even when it is in appropriate to do so. I may put this on my blog and ask her on twitter as to why this keeps happening. I...

When I have worked out how to do this I will. It is exhausting. Like tracking a needle in a moving haystack. If you have ever tried to look through all the steps of who is who and what you need to know and what you should do. Wish me luck

I think it takes a lot of working out. The problem is I have to not only understand how the system works, talk their language do all that is required without coming across in a way they would find offensive to their sensibilities. In other words they can say and act however they feel fit without...

Thank you so much and it is much appreciated as feeling as though you are dealing with this on your own as a family it is hard. As Suffolkers has said it was shambolic and very unprofessional a bit like a comedy sketch that us mum's are very used to but are rather unbelievable. First off I...

Thank you Thank you that is great advice. I haven't been down the rout of alternative practitioners, as it took so long to get a diagnosis of Cecelia his tummy does not tolerate multi vitamins. I am looking into OT to help but at the moment they all recommend GET with CBT. In reality though...

I agree with most of this, it is a pity we know so little when POTS has been around for so long. However it is another can of worms that as a parent you have to appreciate and deal with the best way you can. You can take an attendance officer, teacher and doctors to the diagnosis but you cannot...

I did and have been posting. Professor Rowe came last year to point out the mistakes of not looking at POTS as he has for the last 20 years at AFME, but that did not seem to make any difference?