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FND is now listed on the Rare Diseases so here we go again. I don't think they have a code for it or listed on the NICE guidelines does it? If I am correct how can it then be listed on the Rare Diseases?

PEM is recognised and must be accepted if we are going to move forward with understanding or research. I do not understand why you have such a problem with the 'energy' issue or put another way PEM. Due to lack of understanding or wilful negligence on behalf of the medical profession or...

Sadly those geographical areas are increasing due to the teaching of Professor Crawley and Dr Glaser. Full and free consent is not possible because If you mention any of the information it is a red flag for FII If you refuse treatment you are classed as obstructive and that is another red...

So what has this got to do with ME research? NICE? and this platform? EVERYTHING! Social Services and the Courts rely on the research and the guidelines and those community paediatrics that are so called "court experts". No research into outcome means lack of understanding. You only have to...

It is good to ask questions and make it as clear as possible. The Social Services are being reviewed and I am not sure they realised the enormity of the problem and ME is not the only complex condition that is being targeted the Autistic society are aware of the issues and the problems which...

Not so much a question as a statement of facts. Young people are not afforded consent as they are not given the opportunity and cannot refuse treatment and therefore have no means of consent.

Most, if not all the young people are given no option but to take up the treatment, how does this impact on the young patient and their families where the use of fabrication or inducing illness is used as a control on the parent? The other issue is taking diagnosis away from the young person...

How can there be any form of factually correct understanding if they are trained by those that refuse to diagnose ME properly or understand the difference between ME and cfs ? Most if not all young people with ME are having to have private diagnosis to make sure they are safe with the knowledge...

He was the president of the RCPCH part of CBT studies and brought in Fabricating and Inducing Illness

Have you ever had a test for histamine? This is a simple test of urine, it is a NHS test. The other factor her is the research into Parasite and virus. So if all ME patients were tested for these we could then see which impacts on the patient and which combination has the most impact. Then we...

In the UK Professor White in 2014 knew about POTS but dismissed it and that has been the general rule. My son was diagnosed with POTS in 2016 and ever since they have been trying to take the diagnosis away. You have to wonder why they do not do a simple stand test and look at the patients...

Well that made me grumpy on a Monday Fluff a Duck. It seems to me as though they are supporting therapists rather than patients with Lightning Process and then the ACT. I wonder if you follow the money where it will lead ?

Is there a list of their funding? I know they did the MAGENTA trial together and I know there was other trials in the UCL but cant remember which ones they were now.

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...