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I just came across this this morning and it fills me with what I can only describe as the collywobbles. Firstly how many children with severe ME will go to the GP or hospital? Almost never. What condition will the Dr/Paediatric know what to look out for? I now need a bucket of coffee and to...

The live link I was watching said that Clair was looking forward to working closely with patients. At which point I spat out my coffee and still have not recovered. Chris is part of the Kings Fund I think they said he was giving up his chair to be part of this :coffee::coffee::coffee::coffee:

You don't get to know much about their healthcare. I think; when I have time will have a look and see. Even if I can put some Drs to shame from some good practice would be a good thing to tweet.

Thank you that is always nice to hear. Mostly I speak up for all those mothers that can't and for my son who is my #MEhero

I wonder if there is a country that treat children or anyone with ME well?

I have been trying to flag this up for a year or more. In the debate on the 24th January the minister said it was the Royal Colleges of GP who are giving training and setting exams for ME patients. If this is correct and it would seem to me they are trying to standardise things, that the Royal...

He now has a facebook page and is promoting Kings College it's in his blog https://my-me.blog/ you can follow his journey. That will be fun

Your last comment always makes me think of the ugly sister trying to get her oversized foot in the glass slipper for the kingdom. Never going to work no matter how hard you try and make extending activity if you have PEM after reading a book, how do they think extending your walk distance is...

I just wanted to post this here as I think this will become important with the new guidelines. As the minister in the debate it is the Royal colleges that call the shots for education and I think they are paying for the guidelines to be updated. New guidelines for Medically Unexplained. What...

This is done more by the RCPCH and the police involvement and they only have to site possible emotional harm now as a reason. Withholding the chance of recovery is used as a possible emotional harm.

NICE have said that they do not give a criteria for diagnosis so how can she use it?

I went on the website and ran away lol at speed scared the heebie jeebies out of me Did contact this journalist though. His more my style https://www.eadt.co.uk/news/malcolm-is-a-little-unwell-documentary-stamaril-vaccine-1-5860556

He works with Crawley and he is a comedian that write for Private Eye... I have a lot to say about that but need more coffee before I start

Fiightback are there offering support and gaining momentum https://www.fiightback.co.uk/

NICE are aware of how their guidelines are used we have told them enough times. With this knowledge they have to work making them safe and they can and should work from that viewpoint, they can and should insist on the reporting of harm and that is to say - if the patient looses the ability to...

Well I would argue that they do it anyway? You have to live and to live without support means you have to gradually increase exercise? The Exercise is a bit of a misnomer anyhow due to the fact no one is given exercise so none of it fits. In reality they have a patient with CFS they get funding...

If you went to NHS and they offered it then you should fill it in. We are dealing with the reality of NHS not the dream world the CBT & GET lot are or would like us to live in. There are boxes to explain yourself, which I did. We need CBT and GET seen for what they are in reality and taken...

Not only hysterical tendencies but also manipulative which lets the husbands off the hook. It also has something to do with the fact most fathers find it hard to believe professionals could get it so wrong and their wife's could be right.

It is going to be a very hard year and the family courts throw out defence for the mother. I am at the family court with a mother next week harrowing is not the word. They are trying to keep them secret and they gag the mother with court orders even if they are innocent.

Not sure as Jane is not well and there is only so much a small organisation can do. We need to tackle the research behind it all Dr Glaser is the one running seminars on how to accuse parent with the help of the police based on this research. Christopher Bass has done a few papers I think...