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We what the hell happened for the medical profession to loose that understanding? Why haven't we got the ability to track and trace what happens and why with our autoimmune system and how did all that get blamed on anxiety. I think there was a Canadian who was looking into tracking every virus...

My heart hangs heavy. As in my area they will not recognise any form of dysfunction that they cannot see in a blood test many with POTS and Mast Cell dismissed and how many forced to FND is forever climbing. What then for them what then

I feel sad reading this back through has BACME won? I fear so. Unless and effort is targeted and CBT and GET taken down we will loose a lot more children's childhoods and a lot more lives that can not bare the pain of ME that lasts a lifetime.

Whoop whoop and thanks for letting share your fantastic work now Tweeting :-) lots :party:

I have two cups of coffee already and still cant sit still we so need so much more of this.

Not that I am aware of at the moment but I have started to look and ask. There is always a plan of action with EC research so I would say some funding with regards to mental health or digital has become available? Again I will keep my ears and eyes open. I would suspect this is an ongoing plan...

That is from Dr Glasier and we are looking at getting this taken down her teaching is appalling listen to the radio https://www.bbc.co.uk/programmes/m00030dr?fbclid=IwAR2D6FOrq7za-jbyX_fGk6D1sYNVA_dGU9IV_QEGY-RUZIY1w0GYLjeMh1Ias Gigi mum was accused of being a refrigerator mother as @Sean...

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...