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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 along with the adults, enabling them to have a voice from the very start. Why has this not happened? We also believed that mothers falsely accused of...

Has she never heard of Celiac ? Lactate intolerance? etc. What about the Pret incident? Almost all allergies start with IBS along with cancer of the bowel? If Pret can be torn apart then this research has to be held accountable for the suffering and deaths it will cause? On average it takes 13...

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 forward that those that were at the stakeholder meetings should have a meeting at the end of each stage. This would have given full patient engagement and...

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 there is a neurological problem and that it is understood and respected. Being so nity grity with the words we use leaves those suffering open to...

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 the background waiting.

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 diagnose and relying on the GP? This should automatically disqualify them from NICE as they do not use heart rate monitors and do not mention PEM? If only...

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 forced rehabilitation on children and those severely effected. Having a child who needs to be tube fed parents are accused of FII and an insistence 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 have been treated.

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 would happen. I have no idea why they have done it this way with researchers involved. We (parents) have made it clear and crystal that our children are...

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 School, Social Services or GP they come for a visit at your home. This is reassuring and comforting. They explain PEM in detail and say the child must...

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 you through to Bath. I have 101 things to say about that. We need an ability to be able to complain about the treatment we receive and the missed...

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 could do something for my son. The marks he just shrugged at. He said about Psychological involvement and said this did not mean it was all in his...

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 just moved to FND like SW? Do we know or can we find out if the PACE trial authors paid for the article? Should this be public knowledge if they did...

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 without you, Science for ME and all the community. I help support Fiightback and the situation is beyond words at the secret courts and the false...

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 when reading the cited severity meaning not able to go to school for more than 1 day a week the mind boggles of what this will interpret anything the...

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 evidence that small fibre nephropathy is caused by Coeliac and this can be kicked off by gut infections. Would this then tie in with glial cells. This...

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. Who now offer Fabricating and Inducing Illness courses for £500.00. A 2 day course in court witness also at £500.00 Is this ethical? now need to go...