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My son was 8 when he first became ill and was resigned to the fact that no one would believe he was ill and has often says in his now sarcastic teen tone "What do I have to do to make them believe that I'm ill, die?". He has POTS which they think of as Anxiety triggered, and even though he has...

I guess you have to start somewhere with unpicking the whole mess. I have to say ME people are the most abnormal, normal people. I do wonder how we would have found diabetes if Oskar Minkowski and Joseph Von Mering had not witnesses what happened to that poor dog? Would we have found out about...

I wonder why those points are tender in everyone? There has to be a reason - a cause and affect. Desperate is probably an understatement and can cloud our judgement that is for sure. Desperation along with hope can make a proper mess of the science. Asking and re-asking questions is a good...

Yes and they have been brilliant, but you cannot convince a Dr/Gp that something is wrong unless you have a biomarker. You can give the research but without endorsement of NHS etc they dismiss everything. A little empathy would be helpful but that is a very rare thing. We have been living with...

Just asking because I have been wondering for a while and being just a mum with a child with ME is the most... Well you know I have no where else to go to get understanding and answers. Dr Ramsay mentioned in severe cases acute muscle tenderness when with your forefinger you could detect minute...

Moderator note This post has been copied across and several subsequent posts moved or copied from this thread: Myalgic Encephalomyelitis (ME) or What? An Operational Definition, 2018, Frank Twisk .... My son is now on a steep decline and because he is of school age I am hounded as a...

Why are they only reviewing 13 pieces of evidence? and how do we know which ones they are reviewing? Fluff a Duck how come they announce it this way ? In need of serious amounts of coffee

The person sitting on the panel to help the laypeople to understand research and the process is Professor Tony Kendrick. Most on the panel seem to be mental health researchers and providers. Nigel Beasly is an ENT, is a clinical lead in cancer Nottingham Uni Hospital and deals with clinical...

What astounds me is that there hundreds of cases of false allegations; you only have to look at Tymes Trust so where is the balance? Parker is on the GMC as a trainer. How convenient that is and then you have a master plan of Safeguarding at school geared around MUS and is why they use pervasive...

I also got a negative but I have a question does anyone know who educates the medical profession with regards to ME. I know M Sharp wrote a book for Occupational Health and I know the Choices are educators and SW has something to do with that. I need info on how this all this works. Any ideas

It is not only toxic gas, it is also the amount of bumps to the head that no one ever thinks about. We are only just beginning to understand that bruising and small bleeds to the brain damages the way we think and act imagine how it must have been getting bombed out. What do the old footballs...

Is this the same chap that is part of this http://www.fndaction.org.uk/what-is-fnd/ It seems they are trying to get Neurological Functional Disorder (FND) part of NICE asked for by the NHS that seems to be going through a scoping at the moment...

Thank you for the warm welcome's and good to meet you all. I have now managed to put an introduction on. I don't believe in "I am only a mum" and am always shocked when people assume this. But I am proud to be one and it makes me giggle when they assume, little do they know I think to myself. :)

I attended the NICE Engagement and I also brought up things like Vit B12, FII accusations, Bedbound not being take seriously or understood in any meaningful way, having no visits from medical staff; so therefore we have no real understanding of severe. We need a severity scale in order to...