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I think this is a good idea. I also think it should be done by both. If S4ME on the professional side and then a group on the more person impact side. We just need to keep hitting the truth and hammer it home so the true picture is in plain sight and undeniable.

I just had a looked at the slides and well Fluff a Duck is all I can say :banghead::banghead::banghead::banghead: Slides http://healthcareimprovementscotland.org/programmes/long_term_conditions/neurological_health_services/idoc.ashx?docid=ce6b1be6-3b8a-4732-8885-6adb13311310&version=-1

Not if they suspect FII, that refusal is used against the mother as unwilling to let the child engage in education or socialising. So we find ourselves in a constant loop of Gp and paediatrics not understanding the complexities of ME EDS mast Cell and PEM. They do not believe they are physical...

You are right and this is the difficulty we are finding. Because of the now Health wellbeing and social care are all one, we as mothers get hit from all sides. Notice there need not be any proof or need to show reason, just accuse and pass it on.

Yes it was DR Glaser who was talking at that seminar. She sat on the NICE Safeguarding guidelines. I believe that Action for ME also sat on them or is a stakeholder? Dr Glaser teaches how to accuse mothers/parents of FII though the Royal College of Paediatric and Child Health (RCPCH). There is...

I do not know of any that work in the NHS ME/CFS centres that know and understand ME and PEM.

I agree with you and take your point on board 100% The problem is that when you have engaged with them over several years and in some cases decades there comes a time to call them out? This is not just a ME community problem but also Mesh and 101 different problems with different guidelines...

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...