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  1. Suffolkres

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    https://www.geog.cam.ac.uk/research/projects/rceproleinfluence/
  2. Suffolkres

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    This makes me so sad. RIP Jonathan Kerr. Stephen Holgate was also cited.... Pesticides and OP exposure were suggested. I met with the members of Royal Commission on Environmental Pollution including Holgate in advance of this study and their RCRP report. Wessley even tried to infiltrate this...
  3. Suffolkres

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Expanding the rheumatology lens: should we embrace POTS and post-infectious syndromes? Brittany L Adler brit.adler@jhmi.edu Affiliations & NotesArticle Info Get Access Share More Like many of my colleagues who care for patients with dysautonomia, chronic fatigue syndrome, and...
  4. Suffolkres

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Agree with Jo E re review of NICE. Gillian Leng was an ally... she went DHSC Delivery Lead Wendy Lippmann was an ally... she was moved out..... Wendy has a daughter with ME....
  5. Suffolkres

    Patient led measure of outcomes

    'A simple tool like the disability scale we use being confirmed so if someone is more severe it’s calibratable to eg other serious illnesses.. In 2018, we put some suggestions leaflets etc for our Suffolk GP AGM and exhibition. An A4 symptom scoring chart was part of this and has proved...
  6. Suffolkres

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    Licorice Allsorts.....?. Pick & Mix...? Take your pick. .?
  7. Suffolkres

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Specification (draft as amended v 17 submitted on public access In-Tender) Used during Procurement Process ended 30th May. No idea what latest agreed final Specification says ..... No idea whath'mobilisation' horse trading negotiations have been, or are currently underway. Now with ICB...
  8. Suffolkres

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Peter said, 'What if we can take DecodeME, our own documents and yes, the delivery plan and go to local services and ask for what we want. Not depending upon charities or other intermediaries to communicate it.' Yes!
  9. Suffolkres

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    Section 1: Authors and Development Process The first edition of this document was compiled in 2017 by the severely affected working group of the British Association for CFS/ME (BACME) with help from the BACME executive and other contributors, listed in Appendix A. The final version incorporated...
  10. Suffolkres

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    Appendix A from March 2024 Guide to severe ME. BACME
  11. Suffolkres

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    The chat this morning was about a model of care and possible specification and Pathway. SNEE draft version 17 was in public domain on Find a tender. If we can provide that as a discussion point?
  12. Suffolkres

    Thesis More than meets the eye: An exploration of secondary school experiences and support for children and young people with ME/CFS, Cookson, 2025

    Thus sustantiates all my 30 years involvement and experiences, both as a parent carer and professional in Alternative Provision for sick kids..
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