1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 8th April 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Search Results

Search Again
Page 1 of 13
  1. Tilly
    Post

    Routine outcomes and evaluation of an 8-week outpatient multidisciplinary rehabilitative therapy program for FND 2023 Guy et al

    How do you manage to find this stuff and how do they get funding for this? The merry go round of managing 'bloom and bust'
    Post by: Tilly, Dec 14, 2023 in forum: Other psychosomatic news and research
  2. Tilly
    Post

    Review Psychological interventions to improve ... hypermobility spectrum disorders and Ehlers-Danlos syndrome... 2023 Clark et al

    Anyone who asks the question of differences between children and adults in any context needs to be questioned intently What do they term...
    Post by: Tilly, Dec 14, 2023 in forum: Other psychosomatic news and research
  3. Tilly
    Post

    UK House of Lords/ House of Commons Questions

    A few thoughts about the questions put to Lord Markham. Sadly this shows quite clearly the hidden truths of the situation? Due to the...
    Post by: Tilly, Dec 13, 2023 in forum: General ME/CFS news
  4. Tilly
    Post

    Long COVID and Chronic Conditions in the U.S. Workforce: Prevalence, Productivity Loss, and Disability 2023 Bonner and Ghouralal

    Leads with Mental Health so that is all you have to know to understand where it is going
    Post by: Tilly, Dec 13, 2023 in forum: Long Covid research
  5. Tilly
    Post

    UK House of Lords/ House of Commons Questions

    I think we need a response to both the NHS and the BACME understanding of ME to Barroness Scott. She needs to undeniable and very public support...
    Post by: Tilly, Dec 13, 2023 in forum: General ME/CFS news
  6. Tilly
    Post

    Cambridge ME protest calls for better medical training across UK

    The people at the protest know only too well the issues with this piece and it shows well the hurdles and the problems those with ME face. The...
    Post by: Tilly, Sep 19, 2023 in forum: General ME/CFS news
  7. Tilly
    Post

    Hemostatic abnormalities in patients with Ehlers–Danlos syndrome, 2018, Artoni et al.

    These conditions are only my area in my advocacy work. I am no a professional in any meaningful sense of the word just a mum (and I like that term...
    Post by: Tilly, Sep 15, 2023 in forum: 'Conditions related to ME/CFS' news and research
  8. Tilly
    Post

    Hemostatic abnormalities in patients with Ehlers–Danlos syndrome, 2018, Artoni et al.

    This is the reason we need good solid data on it all. Bendy joints (especially if a ME patient becomes more bendy) , POTS, Mast Cell or...
    Post by: Tilly, Sep 12, 2023 in forum: 'Conditions related to ME/CFS' news and research
  9. Tilly
    Post

    Hemostatic abnormalities in patients with Ehlers–Danlos syndrome, 2018, Artoni et al.

    From my work with those needing and EHCP with EDS this is transferable to Fabricating or Inducing Illness in a child. You ask for appropriate...
    Post by: Tilly, Sep 6, 2023 in forum: 'Conditions related to ME/CFS' news and research
  10. Tilly
    Post

    UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

    This is compounded by allowing bad research or research written in a way to support Government preferred corporate dictions (which is what we...
    Post by: Tilly, Aug 21, 2023 in forum: News from organisations
  11. Tilly
    Post

    UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

    I understand that it is the whole profession. I also get your experience about education and the GMC. However you/the public have to start...
    Post by: Tilly, Aug 16, 2023 in forum: News from organisations
  12. Tilly
    Post

    UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

    It is a murky mess and difficult to get to the bottom of things due to not being given the information fully and with transparency. My point years...
    Post by: Tilly, Aug 16, 2023 in forum: News from organisations
  13. Tilly
    Post

    UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

    My response to your well thought out reasoning. 1st there must be data. We have no data on numbers of those with ME or how long they have had the...
    Post by: Tilly, Aug 15, 2023 in forum: News from organisations
  14. Tilly
    Post

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    Thank you for this information
    Post by: Tilly, Jul 28, 2023 in forum: 2020 UK NICE ME/CFS Guideline
  15. Tilly
    Post

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    Jon Stone and Alan Carson are editors on the BMJ? who they were trained by and the foundation of their knowledge is important and well after...
    Post by: Tilly, Jul 27, 2023 in forum: 2020 UK NICE ME/CFS Guideline
  16. Tilly
    Post

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    Does anyone know? I asked Sonya about the talk given by BACME. she advised me she did not attend and I questioned this as she was on the agenda to...
    Post by: Tilly, Jul 12, 2023 in forum: 2020 UK NICE ME/CFS Guideline
  17. Tilly
    Post

    Circulating microRNA expression signatures accurately discriminate [ME] from fibromyalgia and comorbid conditions 2023 Moreau et al

    They are saying only 3 "For the first time, to our knowledge, we provided evidence showing that miRNA expression levels miR-127-3p, miR-140-5p and...
    Post by: Tilly, Feb 7, 2023 in forum: ME/CFS research
  18. Tilly
    Post

    EDS, hypermobility, and the link, if any, to ME/CFS

    Right so we have to start to unpick what is actually happening and what we think with a bias mind. So how many young people diagnosed as ME with...
    Post by: Tilly, Jun 14, 2022 in forum: Fibromyalgia and Connective Tissue Disorders
  19. Tilly
    Post

    Signs of Intracranial Hypertension, Hypermobility and Craniocervical Obstructions in patients with ME/CFS (Pre-print 2019/published 2020) Bragée et al

    This is the concern I have. Each one of the researchers that look at this is then either warned off or taken down. The latter part of this post...
    Post by: Tilly, May 20, 2022 in forum: ME/CFS research
  20. Tilly
    Post

    EDS, hypermobility, and the link, if any, to ME/CFS

    Posts moved from this thread: The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS -...
    Post by: Tilly, May 20, 2022 in forum: Fibromyalgia and Connective Tissue Disorders
Showing results 1 to 20 of 253 Next >
Search Again
Page 1 of 13