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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...

Here is another research paper just released and disappointingly was From Sarah Jannett Knights https://www.frontiersin.org/articles/10.3389/fped.2018.00302/full?fbclid=IwAR0RZLGw4fvVKJYklPjFj1B4KnK3K0j0KLbyRCZvav4w3gJ1QOAT6Q4n5UE What I find shocking is that there is no mention of PEM and...

I just replied to Jonathan with how it FII seems to be being rolled out We are seeing an increase in mothers being accused and questioned about how they see their child's illness with a view to the risk of emotional harm as the reason for taking the child away from the mother. So now we do...

They are now looking at EDS ME and CF or CFS as FII with one expert witness just using medical history regardless of diagnosis, if fatigue is on there it counts. The way FII is accused now is on the grounds of potential emotional harm. As there are not bio markers or proof that children are...

That got a giggle

They would not know it even if they fell into it? They will turn it their findings into what ever sticks so they can look better than they are

Just read the Daily Mail posted by Daisy May. It is very much like watching Alice in Wonderland teaparty while they use chocolate teapots and call it wine, has nothing to do with science more to do with they think we are fools

A little bit of that with a little bit of - we are really clever and we have found out that in other diseases it causes this sort of thing (they leave this vague so they have wriggle room) so now our friends can go to NICE and say we have found new evidence of this thing (no description given so...

I just found this study with MS and EBV in the brain which I thought was interesting. It deals with an accumulation of EBV in the brain. Now with ME we have PEM which enhances all the symptoms suggesting that what ever causes them is elevated? Could this more of the problem than reactivation...

I think we also have to think about them renaming it to Neurological Functional Disorder. They drew up guidelines earlier this year. They have changed the GP listing to neurological and they have Fabricating and Inducing Illness lined up there also.

Yep that is a good way to be with friends and family.

I totally get that it helps to feel like you have a purpose, still makes you a hero :-)

True and the fact they kept funds untouched or in some cases used for other research is enough to my egg boil.

Sorry that is confusing (I use that term for my son, it makes it easier on him emotionally) recovery back to base line. I need a better way of explaining.

They should also track the recovery. Not so much the time it takes but what happens to the body as it tries to even they systems out. By tracking this they will get an individual response. Track that with others and you will get the bigger picture? Problem funding?