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  1. Tilly

    My Label and Me: I’m not tired and lazy, I have ME

    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...
  2. Tilly

    NICE guidelines and the needs of children with ME

    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...
  3. Tilly

    FITNET-NHS Esther Crawley - 5th protocol out now

    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.
  4. Tilly

    FITNET-NHS Esther Crawley - 5th protocol out now

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

    Journalist looking for case study with child who has ME

    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
  6. Tilly

    NICE Annual Conference 2019: "Transforming care"

    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
  7. Tilly

    Fiightback, an organisation "set up to support those accused of FII"

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

    Closed Forward ME Group CBT/GET Survey - Tell NICE your experiences

    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...
  9. Tilly

    Closed Forward ME Group CBT/GET Survey - Tell NICE your experiences

    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...
  10. Tilly

    Closed Forward ME Group CBT/GET Survey - Tell NICE your experiences

    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...
  11. Tilly

    Hannah Rapley thesis incl. staff’s experience & knowledge of fabricated or induced illness within a paediatric chronic fatigue setting

    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.
  12. Tilly

    Hannah Rapley thesis incl. staff’s experience & knowledge of fabricated or induced illness within a paediatric chronic fatigue setting

    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.
  13. Tilly

    Hannah Rapley thesis incl. staff’s experience & knowledge of fabricated or induced illness within a paediatric chronic fatigue setting

    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...
  14. Tilly

    Hannah Rapley thesis incl. staff’s experience & knowledge of fabricated or induced illness within a paediatric chronic fatigue setting

    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...
  15. Tilly

    Hannah Rapley thesis incl. staff’s experience & knowledge of fabricated or induced illness within a paediatric chronic fatigue setting

    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...
  16. Tilly

    Hannah Rapley thesis incl. staff’s experience & knowledge of fabricated or induced illness within a paediatric chronic fatigue setting

    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...
  17. Tilly

    Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al

    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
  18. Tilly

    Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al

    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
  19. Tilly

    Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al

    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...
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