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  1. Tilly
    Post

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    Observation and the history of the lived experience is where all good science starts from. No good having a model that works in the lab but does...
    Post by: Tilly, Nov 1, 2019 in forum: ME/CFS research news
  2. Tilly
    Post

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    Good that they had a big response and bad they had to close
    Post by: Tilly, Oct 10, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  3. Tilly
    Post

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    I thought I had responded to this, perhaps I missed it somewhere and wanted to update on how things are going. Angus is finding it hard going with...
    Post by: Tilly, Oct 7, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  4. Tilly
    Post

    Dr Nacul speaking tomorrow (Saturday), livestreamed

    Maybe it has more to do with getting out there and getting a voice so that ME will be heard come the day. I think for him or any other person...
    Post by: Tilly, Oct 7, 2019 in forum: ME/CFS research news
  5. Tilly
    Post

    Functional Cognitive Disorder: Diagnostic Challenges and Future Directions, 2019, Pennington et al

    FLUFF will be back when I have consumed enough coffee... sometime never :banghead::banghead::banghead::banghead::banghead::banghead::banghead:
    Post by: Tilly, Oct 3, 2019 in forum: Other psychosomatic news and research
  6. Tilly
    Post

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    So true but what has been missing for so long is the lived reality of the journey and I think you said awhile back that people get on here to...
    Post by: Tilly, Sep 24, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  7. Tilly
    Post

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    Sorry for delay just been away in Arnhem. Yes by all means share and will let you know how we are getting on as we have another call today 24th...
    Post by: Tilly, Sep 24, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  8. Tilly
    Post

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    Just been through to the team that are working with children to find out about what they need from the guidelines to say i was impressed is an...
    Post by: Tilly, Sep 17, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  9. Tilly
    Post

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    It was discussed at length; how technology can be used and they assured us it would not be a problem including children or parent writing in with...
    Post by: Tilly, Sep 14, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  10. Tilly
    Post

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    I did ask for parent to be involved and for those who have been falsely accused of FII along with severe adults but have not heard anything that...
    Post by: Tilly, Sep 13, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  11. Tilly
    Post

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    I understand that but the paediatric is of great concern due to the previous experience of many. I know many have written in about their concerns...
    Post by: Tilly, Sep 13, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  12. Tilly
    Post

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    I am stunned at that comment. I have yet to find any NHS hospital that takes severe children or understands the implications of the severity or...
    Post by: Tilly, Sep 13, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  13. Tilly
    Post

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    I am appalled and it would seem that RCPCH and Crawley are to blame for this misunderstanding. I would advise all parents that have tried to...
    Post by: Tilly, Sep 13, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  14. Tilly
    Post

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    They have now opened up the Oxford Brooks study with regards to children...
    Post by: Tilly, Sep 12, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  15. Tilly
    Post

    Feeling of lacking air.?

    My son suffers a lot with this just as he goes in PEM state. I have been looking into Mast Cell as this is one of the symptoms. As he also has a...
    Post by: Tilly, Sep 7, 2019 in forum: General and other signs and symptoms
  16. Tilly
    Post

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    This is a bit of a worry and part of it all...
    Post by: Tilly, Sep 2, 2019 in forum: 2020 UK NICE ME/CFS Guideline
  17. Tilly
    Post

    Mast cell activation disorders - NIH video

    This is what the Governments strives for so they are not left with the funding or the responsibility and it will all end in calamity. They had a...
    Post by: Tilly, Aug 10, 2019 in forum: Immune: Autoimmune and Mast Cell Disorders
  18. Tilly
    Post

    Mast cell activation disorders - NIH video

    So how do we pull it back? How can we show good science when most of it seems far from it?
    Post by: Tilly, Aug 8, 2019 in forum: Immune: Autoimmune and Mast Cell Disorders
  19. Tilly
    Thread

    Mast cell activation disorders - NIH video

    Moved from a thread on another topic in the members only area. With the issue of EDS ME and Mast Cell the NIH released a video about this and...
    Thread by: Tilly, Aug 8, 2019, 5 replies, in forum: Immune: Autoimmune and Mast Cell Disorders
  20. Tilly
    Post

    Denmark: Analysis and comments to Karina Hansen's journal from when she was sectioned at Hammel Neurocenter

    Thank you so much for sharing this. I was wondering if any of the information can be used? In the UK there has been a young lady called Gigi who...
    Post by: Tilly, Aug 5, 2019 in forum: General ME/CFS news
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