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Sorry been working my way through FII with some other mum's and there is a lot going on. Not sure Crawley had a Fabricating or Inducing Illness one she had MUPPETS that fed into it. The FII pathway was set up by Dr D Glaiser and Sir Stephens with RCPCH they are truly appalling and have now...

Couldn't get to the end I was already spitting out feathers. I get the feeling there is a reason why they have published now. These things don't just happen with this subject.

Fluff I'm bad so so bad, Crawls away in shame. But the Article itself does not tell the reader that and that is the worry? But why republish this now - there is always a game plan. The term "medical exam" is being used when young people are due for an appointment at CFS clinics and parents...

Panic over sort of :banghead:. Why does the date come up as 15 April 2020

It made my eyes water does this now mean that Crawley is part of the collaboration still and attached to Action for ME with the comment from her friend Hammond on how anxiety about coron19 is going to make more problems with health are we going backwards. Children from Bath are being asked to...

This is where Invest in ME is? and this involves some degree of CBT/mind control? How is this all gelling together? Feel a bit uneasy about this

Yes they did and they do not encourage patient participation. I would be doubtful if they would report harm of any degree from experiences of those that attend the best you can hope for is supportive letters?

Observation and the history of the lived experience is where all good science starts from. No good having a model that works in the lab but does not translate in reality. We have to be careful here as cooking up a storm of dismissing people who have lived experience, is what we are all fighting...

Good that they had a big response and bad they had to close

I thought I had responded to this, perhaps I missed it somewhere and wanted to update on how things are going. Angus is finding it hard going with his cognition or lack of it being what it is. I find the researcher engaging and patient. The problem we face is that we know Angus has a lot to...

Maybe it has more to do with getting out there and getting a voice so that ME will be heard come the day. I think for him or any other person within the ME research community, they need funding and they need the ear of the establishment and that is a kin to walking on eggshells, on a tightrope...

FLUFF will be back when I have consumed enough coffee... sometime never :banghead::banghead::banghead::banghead::banghead::banghead::banghead:

So true but what has been missing for so long is the lived reality of the journey and I think you said awhile back that people get on here to look, listen and hopefully hear and learn, and as I have said before the most important thing is our conversations. Working through the complexity and...

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...