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Sorry for delay just been away in Arnhem. Yes by all means share and will let you know how we are getting on as we have another call today 24th September 2019

Just been through to the team that are working with children to find out about what they need from the guidelines to say i was impressed is an understatement. It would seem that they are changing to suite the child and the parent. They understand the fluctuation and the problem with PEM. I...

It was discussed at length; how technology can be used and they assured us it would not be a problem including children or parent writing in with their experiences and the chair was given a book with the problems we have. This is why I'm so upset that they have changed as they did with the name...

I did ask for parent to be involved and for those who have been falsely accused of FII along with severe adults but have not heard anything that suggest they are going to do this.

I understand that but the paediatric is of great concern due to the previous experience of many. I know many have written in about their concerns and have not had a reply. Even with the debate they are not changing their ways and when you have very young children just diagnosed (6 months) to...

I am stunned at that comment. I have yet to find any NHS hospital that takes severe children or understands the implications of the severity or PEM. If you can't get to hospital appointments, young people are dismissed and no records are kept on our children. The most severe left behind in beds...

I am appalled and it would seem that RCPCH and Crawley are to blame for this misunderstanding. I would advise all parents that have tried to engage with this to email CFSME@nice.org.uk We need to keep a track of this and as none of the charities are taking this in hand we need to find a way of...

They have now opened up the Oxford Brooks study with regards to children https://www.actionforme.org.uk/children-and-young-people/nice-guideline-focus-group/

My son suffers a lot with this just as he goes in PEM state. I have been looking into Mast Cell as this is one of the symptoms. As he also has a rash at the tip of his arms when he takes antihistamine this disappears and since on this his that inability to open his lungs enough to get the air in...

This is a bit of a worry and part of it all https://onlinelibrary.wiley.com/doi/10.1002/msc.1421?fbclid=IwAR3zYyjNT5WtqxU0xP2i7rLknzHV7d3L8PpLDbw2tKFdW24F-mGRX8dSfnE

This is what the Governments strives for so they are not left with the funding or the responsibility and it will all end in calamity. They had a problem with Bounty packages given to new mothers and the research into baby formula milk they promote. How do we work our way out of this as no one...

So how do we pull it back? How can we show good science when most of it seems far from it?

Moved from a thread on another topic in the members only area. With the issue of EDS ME and Mast Cell the NIH released a video about this and wondered if this would make a difference in the UK about it all

Thank you so much for sharing this. I was wondering if any of the information can be used? In the UK there has been a young lady called Gigi who has been battling to stay out of secure Mental unit or out of a hospital that agrees with keeping severe ME patients active beyond their ability to...

I would say all respect and trust from parents but mostly mothers (as they are the ones who have to witness the carnage that unfolds in these trials and get blamed for that carnage) in the system has now evaporated.

Thank you @Andy an important piece of work - thank you. Felt slightly sick when I read what MRC was funding and feel that all our children are going to be re-diagnosed with FND. Has anyone looked closely at how they can determine Functional? Now going to sit in a corner and drink a bucket of...

Words just simply fail. I wonder if this sort of approach to data has been applied in other diseases? If this is done as a matter of course such as Diabetes, Cancer, Ms or Asthma then this would, starkly show how inadequate patient safety is taken. How can anyone give informed consent on this...

That was my point when in a PEM state it takes very little to push further into it. A cumulative effect.

The problem is most if not all Dr cannot tell the difference and this group are now taking ME/CFS off children who have been diagnosed by the best in the field and re diagnosing FND with Chronic Fatigue and therefor pushing children with ME into CBT and GET and mothers of Fabricating or Inducing...

They do mean among other things sensory but this would change with the PEM state and they cycle that goes with it. When you are stable the sensory is not too bad but push a person in a PEM state and soon the senses are involved. Sorry you have to come down to my level (which I have to say you...