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  1. Trish
    Post

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

    The wellness recovery plan thing is in brackets as an optional extra, I assume for those who are asking for help with psychological symptoms. It's...
    Post by: Trish, Apr 15, 2024 at 6:25 PM in forum: ME/CFS research news
  2. Trish
    Post

    Severe difficulties with eating in ME/CFS

    Thank you for trying, @Jonathan Edwards. I hope something useful will come of your efforts this time.
    Post by: Trish, Apr 15, 2024 at 4:44 PM in forum: ME/CFS research
  3. Trish
    Post

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

    I've been exploring some of the current BACME guides, all of which have been updated or written since NICE 2021. Of particular relevance to this...
    Post by: Trish, Apr 15, 2024 at 4:27 PM in forum: ME/CFS research news
  4. Trish
    Post

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

    I've been browsing some of the BACME guides which have all been updated to supposedly be NICE compliant....
    Post by: Trish, Apr 15, 2024 at 11:53 AM in forum: News from organisations
  5. Trish
    Post

    Trial Report Sijunzi decoction...improves fatigue symptoms with changes in gut microbiota in CFS: A randomized, double-blind, placebo-controlled etc., 2024, Dai

    Fixed.
    Post by: Trish, Apr 15, 2024 at 11:24 AM in forum: ME/CFS research
  6. Trish
    Post

    United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

    The BACME guide for severe ME/CFS has a section on feeding. It does include enteral feeding as needed sometimes, but that is followed by a section...
    Post by: Trish, Apr 15, 2024 at 10:53 AM in forum: General ME/CFS news
  7. Trish
    Post

    United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

    This article has useful case studies and commentary. Life-Threatening Malnutrition in Very Severe ME/CFS, 2021, Baxter, Speight, Weir
    Post by: Trish, Apr 15, 2024 at 10:44 AM in forum: General ME/CFS news
  8. Trish
    Post

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

    Afternoon sessions Delivering NSS & DHSC recommendations Dysregulation BACME severely affected guide. Long- Covid CYP & Adults Outcome...
    Post by: Trish, Apr 14, 2024 at 4:08 PM in forum: News from organisations
  9. Trish
    Post

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

    I think it would be reasonable for pwME to ask for a transcript of Dr Alan Stewart's keynote speech. He's one of the many medical advisors to the...
    Post by: Trish, Apr 14, 2024 at 2:39 PM in forum: News from organisations
  10. Trish
    Post

    Trial Report Exploring the content validity of the Chalder Fatigue Scale using cognitive interviewing in an ME/CFS population, 2024, Gladwell

    Some posts have been moved to: COFFI - The international collaborative on fatigue following infection
    Post by: Trish, Apr 14, 2024 at 2:06 PM in forum: ME/CFS research
  11. Trish
    Post

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

    The project funded by the MEA and led by Tyson and Gladwell is creating several PROMs. The first two are TIMES and PASS. This is the project Sarah...
    Post by: Trish, Apr 13, 2024 at 3:35 PM in forum: ME/CFS research news
  12. Trish
    Post

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

    Confusing, isn't it. They are both part of this project. TIMES is the symptoms one that was run in November 2023. We don't seem to have had much...
    Post by: Trish, Apr 13, 2024 at 3:06 PM in forum: ME/CFS research news
  13. Trish
    Post

    Trial Report Comorbidity and Sex Differences in Functional Disorders and Internalizing Disorders, 2024, Thomas

    If the diagnoses are based on questionnaires, this is most likely to be about overlapping questions, not necessarily overlapping conditions.
    Post by: Trish, Apr 13, 2024 at 2:52 PM in forum: Psychosomatic research - ME/CFS and Long Covid
  14. Trish
    Post

    The disappearance of ME/CFS

    I sympathise with OT's and physios being put in the position of diagnosing people with ME/CFS and/or Long Covid. As far as I know, they aren't...
    Post by: Trish, Apr 13, 2024 at 2:43 PM in forum: Epidemiology (incidence, prevalence, prognosis)
  15. Trish
    Post

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

    Returning to the recent MEA article about this project, a couple of comments: It opens with: We have a thread discussing that study here:...
    Post by: Trish, Apr 13, 2024 at 12:49 PM in forum: ME/CFS research news
  16. Trish
    Post

    Trial Report Exploring the content validity of the Chalder Fatigue Scale using cognitive interviewing in an ME/CFS population, 2024, Gladwell

    https://www.s4me.info/threads/s4me-submission-to-the-public-review-on-common-data-elements-for-me-cfs-problems-with-the-chalder-fatigue-questionnai...
    Post by: Trish, Apr 13, 2024 at 12:08 PM in forum: ME/CFS research
  17. Trish
    Post

    Trial Report Exploring the content validity of the Chalder Fatigue Scale using cognitive interviewing in an ME/CFS population, 2024, Gladwell

    I have 2 problems with this research. First, why wasn't it done decades ago? Anyone with half a brain could just read the 11 statements and see...
    Post by: Trish, Apr 12, 2024 at 9:02 AM in forum: ME/CFS research
  18. Trish
    Post

    Preprint System and Method to Determine ME/CFS and Long COVID Disease Severity Using a Wearable Sensor, 2024, Sun et al

    I think a combination of upright time as measured here, time lying down and steps could be very useful. I like this version of upright time with...
    Post by: Trish, Apr 12, 2024 at 8:47 AM in forum: ME/CFS research
  19. Trish
    Post

    Germany: ME/CFS Research Foundation

    From an email: ME/CFS Research Update: an overview of the current research in Germany and Austria Hamburg, 10 April 2024 The new ME/CFS Research...
    Post by: Trish, Apr 10, 2024 at 12:59 PM in forum: News from organisations
  20. Trish
    Post

    Longitudinal Cytokine and Multi-Modal Health Data of an Extremely Severe ME/CFS Patient with HSD Reveals Insights... 2024 Jahanbani et al

    I think it is a good idea to expand the severity scale to include more detail at each severity level. I always seem to fall between levels,...
    Post by: Trish, Apr 10, 2024 at 12:28 PM in forum: ME/CFS research
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