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  1. AknaMontes
    Post

    Why the Psychosomatic View on [ME/CFS] Is Inconsistent with Current Evidence and Harmful to Patients, 2023, Thoma et al

    I'm concerned that the harms done by psychosomatic misdiagnosis in ME have so far failed to take into account the devastation this causes within...
    Post by: AknaMontes, Jan 1, 2024 in forum: Psychosomatic research - ME/CFS and Long Covid
  2. AknaMontes
    Post

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

    I understand they have a key role in making sure doctors are safe to practice - this is what they are absolutely failing to do with regard to ME...
    Post by: AknaMontes, Aug 17, 2023 in forum: News from organisations
  3. AknaMontes
    Post

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

    My thoughts, for what they are worth, are that: 1. The change in approach to ME/CFS patients has to be compulsory or the whole exercise will go...
    Post by: AknaMontes, Aug 14, 2023 in forum: News from organisations
  4. AknaMontes
    Post

    David Systrom, researcher, Brigham and Women's Hospital, USA

    He says preload failure is ubiquitous in this pt population. His word. If that’s so, hasn’t he solved the age old mystery of no biomarker for...
    Post by: AknaMontes, Jul 24, 2023 in forum: ME/CFS research news
  5. AknaMontes
    Post

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

    i reported the comment as offensive, explaining why as a person with M.E.
    Post by: AknaMontes, Jul 16, 2023 in forum: 2020 UK NICE ME/CFS Guideline
  6. AknaMontes
    Post

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

    I dont understand why the presence of any other condition would negate a diagnosis of ME given that PEM (so ewhat arguably?) is only found in ME....
    Post by: AknaMontes, Jul 15, 2023 in forum: 2020 UK NICE ME/CFS Guideline
  7. AknaMontes
    Post

    Pitching to Panorama: Efforts to commission a documentary on NICE guideline, bad science (PACE etc), and patient harm

    You may well be right, if I find out any more I will post an update. I wrote to Panorama to ask if this is true, but have had no reply. I haven't...
    Post by: AknaMontes, Jul 11, 2023 in forum: General Advocacy Discussions
  8. AknaMontes
    Post

    Long Covid in the media and social media 2023

    Indeed, he sounds completely confused.
    Post by: AknaMontes, Jul 11, 2023 in forum: Long Covid news
  9. AknaMontes
    Post

    Guide: Involving People with ME and Other Energy Limiting Conditions, by the World ME Alliance

    We need improved access to university-level courses in order to be able to study - the current requirement to study minimum half-f/t hours per...
    Post by: AknaMontes, Jul 9, 2023 in forum: Resources
  10. AknaMontes
    Post

    Long Covid in the media and social media 2023

    David comments about. They had that data, right. So they said oh, look pacing , people who did pacing, they felt better, people who stuck with...
    Post by: AknaMontes, Jul 9, 2023 in forum: Long Covid news
  11. AknaMontes
    Post

    Costs of adult functional neurological disorders at a tertiary hospital in central South Africa, 2023, Christopher et al

    Debunked by David Tuller recently, I think the figure has now been retracted
    Post by: AknaMontes, Jul 8, 2023 in forum: Other psychosomatic news and research
  12. AknaMontes
    Post

    Post-exertional Malaise in ME/CFS - Webinar for Health Professionals - Dr Cathy Stephenson

    The pacing for ME really does need differentiating, as it is a safety issue, pacing to prevent PEM to reduce risk of deterioration and possibly...
    Post by: AknaMontes, Jul 6, 2023 in forum: Resources
  13. AknaMontes
    Post

    Biomarkers for ME/CFS - discussion thread on the next steps for testing biomarkers, and why we need them

    Moved post A simple biomedical test that could identify ME/CFS might help those Very Severe who are trapped in terrible situations in the UK...
    Post by: AknaMontes, Jul 6, 2023 in forum: Laboratory and genetic testing, medical imaging
  14. AknaMontes
    Post

    Biomarkers for ME/CFS - discussion thread on the next steps for testing biomarkers, and why we need them

    I'm not going to land my source in it without checking with them first. Currently they are not well, so will catch up at some point. I was only...
    Post by: AknaMontes, Jul 5, 2023 in forum: Laboratory and genetic testing, medical imaging
  15. AknaMontes
    Post

    Biomarkers for ME/CFS - discussion thread on the next steps for testing biomarkers, and why we need them

    So what are the possible work arounds? It must be possible somehow. (Envisages a lab in an adapted ice cream van playing the panorama theme tune...
    Post by: AknaMontes, Jul 5, 2023 in forum: Laboratory and genetic testing, medical imaging
  16. AknaMontes
    Post

    Biomarkers for ME/CFS - discussion thread on the next steps for testing biomarkers, and why we need them

    At least 'maverick' doctor Sarah Myhill was trying to get something done, and her instinct on mitochondrial involvement was bang on. I'm a...
    Post by: AknaMontes, Jul 5, 2023 in forum: Laboratory and genetic testing, medical imaging
  17. AknaMontes
    Post

    Biomarkers for ME/CFS - discussion thread on the next steps for testing biomarkers, and why we need them

    I think people will be making their own minds up about the fibronectin tests, and what matters right now isn't whether or not people do have the...
    Post by: AknaMontes, Jul 5, 2023 in forum: Laboratory and genetic testing, medical imaging
  18. AknaMontes
    Post

    Pitching to Panorama: Efforts to commission a documentary on NICE guideline, bad science (PACE etc), and patient harm

    Unfortunately I have no more information, just heard via a friend. Must have been a good programme though!
    Post by: AknaMontes, Jul 5, 2023 in forum: General Advocacy Discussions
  19. AknaMontes
    Post

    Pitching to Panorama: Efforts to commission a documentary on NICE guideline, bad science (PACE etc), and patient harm

    I've already written to them several times, and then found out apparently a very good Panorama programme was made in the last two years, but the...
    Post by: AknaMontes, Jul 5, 2023 in forum: General Advocacy Discussions
  20. AknaMontes
    Post

    Pitching to Panorama: Efforts to commission a documentary on NICE guideline, bad science (PACE etc), and patient harm

    Post by: AknaMontes, Jul 5, 2023 in forum: General Advocacy Discussions
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