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  1. Suffolkres

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    Well I never... I have one, and never knew it was called that. You live and learn.
  2. Suffolkres

    Living With: UK digital platform for NHS services including ME/CFS

    https://www.esneft.nhs.uk/service/covid-and-long-covid/other-long-covid-resources/ Monitoring App The ‘Living With’ app supports COVID recovery. It allows clinicians to monitor your condition progress remotely. This is through assessments like the Dyspnoea 12, trackers for medication...
  3. Suffolkres

    Living With: UK digital platform for NHS services including ME/CFS

    https://transform.england.nhs.uk/key-tools-and-info/digital-playbooks/cancer-digital-playbook/a-mobile-platform-to-allow-patients-to-track-manage-and-understand-their-care-from-home/
  4. Suffolkres

    Living With: UK digital platform for NHS services including ME/CFS

    I have a feeling that this App was used by former Suffolk NE Essex LC Assessment Service. At East Suffolk NE Essex Foundation Trust So I could find someone who was authorised to use this from Engagement Service Users Group?
  5. Suffolkres

    Living With: UK digital platform for NHS services including ME/CFS

    Google it! What is another word for adherence? Recent Examples of Synonyms for adherence. adhesion. compliance. cling. conformity. Who defines adherence? Medication adherence is defined by the World Health Organization as "the degree to which the person's behavior corresponds with the agreed...
  6. Suffolkres

    Living With: UK digital platform for NHS services including ME/CFS

    Ho hum... 'adherrance...'????? What is that pray?
  7. Suffolkres

    ‘A gift and a curse’: the benefits and limitations of self-tracking Long COVID, 2025, Jayadeva & Lupton

    Trish thus research might be a way to Track the PROMs App development being now misapplied to ME and severely ill patients?
  8. Suffolkres

    Living With: UK digital platform for NHS services including ME/CFS

    Steve Berry, Commercial Director of East Coast Community Health, said: “We are thrilled to partner with Living With to drive innovation in rehabilitation and physiotherapy. Together, we are committed to advancing every part of our care by equipping our clinicians and physiotherapists with...
  9. Suffolkres

    Living With: UK digital platform for NHS services including ME/CFS

    Nice chap I spoke to said the CEO and or Chief developer would give me a call..... Obviously had them worried.... https://livingwith.health/our-team/
  10. Suffolkres

    Living With: UK digital platform for NHS services including ME/CFS

    Side note, are you aware of this: https://livingwith.health/me-cfs-therapies/ ? Their long covid page is all about rehab as a treatment and deconditioning.
  11. Suffolkres

    Living With: UK digital platform for NHS services including ME/CFS

    Moved posts Guess what.... it's like whack a (digital) mole....... with Apps popping up everywhere promising tbe earth. Latest one is 'Living with'..... Allegedly for ME and CFS......
  12. Suffolkres

    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    My mum.would have said, 'No smoke without fire'.......! Still no acknowledgement from Russell F or Charlotte MEA to my repeated request for a call and for resolution of my request re Seminar..... CS is still in oblivion on this matter.... MEA Trustees won't respond. What to do..?
  13. Suffolkres

    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    It would appear from MELN and those with involvement with ME 'Non' Delivery Plan ..... that 'someone' within DHSC Delivery Plan group .. has 'suggested and has made 'overtures' and has helped prearrange for Eleros to met with some Forward ME attendees and nembers soon....? If this is for...
  14. Suffolkres

    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    Eleros essentially operational during the NHSE Covid flush of money and LC Serviced via MEA Sarah Tyson PROMs etc, (then leads to Delivery plan and BACME involvement) ...have been heavily 'marketing' their wares, talking up their product and expertise and then transposing across to ME and...
  15. Suffolkres

    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    Sadly he has not attained a professor status..... was in Norfolk before he passed. I had been emailing him...
  16. Suffolkres

    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    Excellent. I have had invites to 'talk' but that would be a wasted opportunity. I believe S4ME in the form of an expert panel should use this offer as I am a member of S4ME whilst being excluded from my Suffolk Coproduction work for a year and effectively..... Entirely in the dark as to how...
  17. Suffolkres

    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    This is so poignant ..... So many major contributors gone..... Whilst those responsible continue hale and hearty, and continue to weave their dangerous web of influence and deceit ...
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