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  1. Joan Crawford
    Post

    Functional Neurological Disorder (FND) - articles, social media and discussion

    Truly astonishing. Inept and disquieting. As someone misdiagnosed with ME/CFS this really gets my goat. I could quite easily have been labelled...
    Post by: Joan Crawford, Apr 18, 2024 at 12:13 PM in forum: Psychosomatic theories and treatments discussions
  2. Joan Crawford
    Post

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

    Thanks Kitty. Going to plan so far :)
    Post by: Joan Crawford, Apr 15, 2024 at 3:31 PM in forum: News from organisations
  3. Joan Crawford
    Post

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

    Thanks @Hutan :) It was an unwelcome 50th birthday present :worried:
    Post by: Joan Crawford, Apr 14, 2024 at 11:13 PM in forum: News from organisations
  4. Joan Crawford
    Post

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

    Hi, I'm not a member of BACME. I have attended several conferences in the past and fed back notes and comments. I am having treatment currently...
    Post by: Joan Crawford, Apr 14, 2024 at 7:43 PM in forum: News from organisations
  5. Joan Crawford
    Post

    Severe difficulties with eating in ME/CFS

    I'm assuming this is largely medical information written by medics? If it would be of value to include push back on some of the psychological...
    Post by: Joan Crawford, Apr 13, 2024 at 11:00 PM in forum: ME/CFS research
  6. Joan Crawford
    Post

    Protocol Efficacy of patient education and duloxetine, alone and in combination, for patients with multisystem functional somatic disorder:... 2024 Jespersen+

    It's repetition ad nauseum. No need to repeat. The evidence base for efficacy of duloxetine in FMS is modest but can help a bit for some (pain...
    Post by: Joan Crawford, Apr 13, 2024 at 1:36 PM in forum: Psychosomatic research - ME/CFS and Long Covid
  7. Joan Crawford
    Post

    Cass report, quality of evidence in evidence-based medicine and double-blinding

    I'm reading Time to Think by Hannah Barnes which is an examination of the inside story of GIDS and goes into detail about the lack of evidence,...
    Post by: Joan Crawford, Apr 11, 2024 in forum: Other health news and research
  8. Joan Crawford
    Post

    Trial Report Imbalanced Brain Neurochemicals in long COVID and ME/CFS: A Preliminary Study using MRI, 2024, Thapaliya et al

    Hmmm, the glutamate and NAA levels were found to be raised in pwME and LC so that kinda kicks their theory a bit more, maybe. :sneaky: I was...
    Post by: Joan Crawford, Apr 9, 2024 in forum: ME/CFS research
  9. Joan Crawford
    Post

    Trial Report Imbalanced Brain Neurochemicals in long COVID and ME/CFS: A Preliminary Study using MRI, 2024, Thapaliya et al

    "In ME/CFS, we found a positive association between glutamine and Cr+PCr levels and ‘physical activity’, indicating that lower physical activity...
    Post by: Joan Crawford, Apr 8, 2024 in forum: ME/CFS research
  10. Joan Crawford
    Post

    Trial Report Imbalanced Brain Neurochemicals in long COVID and ME/CFS: A Preliminary Study using MRI, 2024, Thapaliya et al

    And that would be sad. Can anyone comment on the method and cost of such a study? And whether this is something a neurologist would take interest in?
    Post by: Joan Crawford, Apr 8, 2024 in forum: ME/CFS research
  11. Joan Crawford
    Post

    Protocol Personalised Exercise-Rehabilitation FOR people with Multiple long-term conditions (PERFORM): protocol for a randomised feasibility trial 2024 Simpson

    That'll likely look exactly like all the other poorly designed, inadequately measured (absence of the objective and real world measures) trials of...
    Post by: Joan Crawford, Apr 8, 2024 in forum: Other health news and research
  12. Joan Crawford
    Post

    Trial Report Imbalanced Brain Neurochemicals in long COVID and ME/CFS: A Preliminary Study using MRI, 2024, Thapaliya et al

    Interesting to see this. I cannot comment on the method etc used but if replicated could make a lot of sense regarding patients symptoms...
    Post by: Joan Crawford, Apr 8, 2024 in forum: ME/CFS research
  13. Joan Crawford
    Post

    Protocol Personalised Exercise-Rehabilitation FOR people with Multiple long-term conditions (PERFORM): protocol for a randomised feasibility trial 2024 Simpson

    " The primary outcome is feasibility and a range of participant outcomes will be assessed using a comprehensive range of questionnaires and...
    Post by: Joan Crawford, Apr 7, 2024 in forum: Other health news and research
  14. Joan Crawford
    Post

    Protocol Personalised Exercise-Rehabilitation FOR people with Multiple long-term conditions (PERFORM): protocol for a randomised feasibility trial 2024 Simpson

    " The trial population includes people with multiple long-term conditions, a population which often experiences a high disease and treatment...
    Post by: Joan Crawford, Apr 7, 2024 in forum: Other health news and research
  15. Joan Crawford
    Post

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

    Pretty much every scale like this used with pwME has a ceiling effect. Not much use. Fatigue severity scale a tad better but not much. Most...
    Post by: Joan Crawford, Apr 7, 2024 in forum: ME/CFS research
  16. Joan Crawford
    Post

    Time-dependent complexity characterisation of activity patterns in patients with Chronic Fatigue Syndrome 2024 Rabaey et al

    "We propose an extension of the allometric aggregation method, which characterises the complexity of a physiological signal by quantifying the...
    Post by: Joan Crawford, Apr 3, 2024 in forum: ME/CFS research
  17. Joan Crawford
    Post

    Review The vicious cycle of [FND]s: a synthesis of healthcare professionals’ views on working with patients, 2020, Barnett, Tyson et al

    How can a diagnosis of FND be made with any certainty or accuracy? That's a non starter. FND is not defined by objective evidence. It's a...
    Post by: Joan Crawford, Apr 2, 2024 in forum: Other psychosomatic news and research
  18. Joan Crawford
    Post

    Ivermectin - does it worsen symptoms?

    I took it probably from memory about 10 to 12 times over 2 to 3 years. My records are in my attic and not accessible to check. I had reaction to...
    Post by: Joan Crawford, Mar 29, 2024 in forum: Drug and supplement treatments
  19. Joan Crawford
    Post

    Article re Switch that stops immune system attacking healthy cells

    What the heck do psychologists know about 'immune responses' or immunology. Not on my training or curriculum at any point. What immunologists...
    Post by: Joan Crawford, Mar 26, 2024 in forum: Other health news and research
  20. Joan Crawford
    Post

    Article re Switch that stops immune system attacking healthy cells

    Wow, that's quite some leap :banghead:
    Post by: Joan Crawford, Mar 26, 2024 in forum: Other health news and research
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