This is my reply to the email sent to me. We believed right from the engagement meeting that NICE was to engage with children who have severe ME...
Has she never heard of Celiac ? Lactate intolerance? etc. What about the Pret incident? Almost all allergies start with IBS along with cancer of...
They were asked in the beginning to allow children and the severe to have a voice and I was personally assured this would happen. I also put...
Trouble is you have to have an understanding of the difference and mostly people with ME do not care what you call it as long as it is understood...
If they have put these constraints on is it down to them or down to the community to find such researchers? My concern is that they have some in...
I do love to see a chocolate teapot melt, only it is taking a lot longer for everyone to see. How can they get away with not being able to...
I have just noticed the terms have changed to include encephalopathy down grade until it is meaningless?
They also have been asked to have a group of parents falsely accused of FII. This is very important as there has been an alarming increase of...
I would think and looking back on how things have been put together, this has been the only way to get this going. The researchers have control?
But who would be able to put this together as a researcher is needed? Most of those that need their voices heard are so traumatised by how they...
NICE were asked many times and I am still asking for the severe and children's voices to be heard. I have been given personal assurances this...
When mum's are new to ME they look or even told to contact AFME. The site looks good and they are helpful. If you start to have problems with...
What is "premium" membership? That is a worry if parents have been let down. I have never been offered a case worker.Acton for ME just filter...
Had the GP out to him and he went through the motions of taking his temperature etc you could see that he was not going to be convinced that he...
I love this the #LOWBATTERYMAN off to find him on Twitter
I agree with you, she does undermines her piece and glad to hear that they are loosing people in their filed. However, we know they have not gone...
I sat dawn with my coffee and read your post Johnathan and like the caffeine, you are so needed. In a world gone mad I'm not sure if I could cope...
No you are correct they will not be asking patients and furthermore and more of a worry the Drs will be given their understanding of severity and...
I read it as though there was an increased risk and they needed more info. They did include Coeliac in 2007 NICE guidelines. There is also good...
Would also like to point out that this is part of the British Paediatric Surveillance unit of the royal College of Paediatrics and Child Health....
Separate names with a comma.
