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If you watch the family court reform you can see it all happening

They are on a time limit due to JR but if they don't make a decision they hope they can run the JR out of time. Factor in the the NHS are lumping MUS (no research and a name that means nothing) and FND (now on NORD and so they will try to implement and ask NICE to make a guideline without any...

They should have a toolkit as they do with EDS hEDS this is one thing a RT event could be useful for as it has been used in the past as a training aid. If there was a toolkit it would be easier for YP to enable to fight the battles they face.

with all the funding she has she should be challenged on that ? If she cannot fully explain PEM she should be thrown out?

Will give that a go. I have a wicked witch cape somewhere will dig it out and get back to you

It is shocking what they can change subtle changes have big impacts.

If that is the case that was a very clever move in hindsight, but could have backfired so badly for patients. Having been involved in this tossing and turning quagmire that patients have been put through, it was understandable that people were skeptical and in a way perhaps, that is why they or...

Oh how I wish that was how it worked. Firmly pressing buttons is my occupation at the moment and I do wish the computer and others would take notice of my intent.

This is where the research and directed research needs to be. It also needs to call out theories masquerading as facts. Making the public aware of PEM (a lot do already) will enable them to see the problems and as more young people are going through LongCovid, Lymes and PANS/PANDAS then we will...

Right so how do we protect young people from this? As they will and are filtering them from ME saying FND is a co morbidity and some cases taking cfs or ME away as a diagnosis? They have no science to back up as they still are calling this a theory? those new parent are jumping for joy at the...

You might find this useful to listen to how he feeds into our part knowledge. He does not seem to explain the damage and how it impacts of movement What Is FND - FND Hope International

Here we go Functional Neurological Disorder - NORD (National Organization for Rare Disorders) (rarediseases.org)

They seem to accept it. Suffolk, Cambridge filters all those with perplexing presentations such as POTS, ME, cfs, mast cell, EDS etc there. they dont do any testing apart from standard blood tests which they seem to not look at? They have even denied on at least one occasion that someone which...

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...