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  1. Hutan

    Hypothalamus Connectivity in Adolescent Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2024, Byrne et al.

    3.4 Differences in Hypothalamus Connectivity Between ME/CFS and Controls So strength of connectivity wasn't different. Reported confidence intervals for relationships of connectivity degree (as opposed to strength, whatever 'degree' means) straddle either side of zero. So, I don't think they...
  2. Hutan

    Hypothalamus Connectivity in Adolescent Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2024, Byrne et al.

    Brain imaging results are all over the place across various studies, as noted in the introduction of this paper. It's not clear to me how much of the analysis was automated and how much involved manual work that might be subject to bias. There was no statement about the people analysing the...
  3. Hutan

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

    It's not bad on this thread, for the reason MrMagoo notes :), but we have converted an existing thread into a place for wearables news: News on wearable technologies for research and have copied Binkie4's post there.
  4. Hutan

    Cost-effectiveness of an extended-role [GP] clinic for [PPS]: results from the Multiple Symptoms Study 3 (MSS3)... 2024 Deary, Burton et al

    We have a number of threads about the underlying study: MSS3 See here Effectiveness of a symptom-clinic intervention ... multiple and persistent physical symptoms, 2024, Burton, Deary et al There are links to the other threads there. MSS3: a morass of mediocrity.
  5. Hutan

    Cost-effectiveness of an extended-role [GP] clinic for [PPS]: results from the Multiple Symptoms Study 3 (MSS3)... 2024 Deary, Burton et al

    A QALY is a year of life lived in perfect health. The mean QALY difference was 0.0447. I make that 16 days. It is set up to be a one-off intervention. And, as @rvallee says, actually as the paper says, the difference was not statistically significant. So, a tiny absolute difference that...
  6. Hutan

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Even as Cochrane falls to bits in some places, seemingly unable to effectively deal with complaints, the Larun et al review is still there causing problems. Cochrane Australia is based at Monash University. There's a contact in Austria - maybe someone active in the We&ME Foundation would have...
  7. Hutan

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    https://www.cochrane.org/about-us/our-global-community/geographic-groups Looks like there are contacts for a lot of countries including the UK.
  8. Hutan

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    I've been regularly sending similar emails to the Cochrane contact person for my country - e.g. petition updates and links to the petition. If you (the S4ME members) have the capacity to do so, you could find out who the Cochrane contact person for your country is, and contact them. At the...
  9. Hutan

    Ignored, blamed, and sometimes left to die – leading expert ME explains origins of a modern medical ‘scandal’, Chris Ponting, The Conversation, 2024

    Yes, me too. Thank you to Chris and Simon, and everyone who stands with us, even though it is not the easy road.
  10. Hutan

    The Concept of ME/CFS

    Re ME/CFS is one group or multiple groups: I don't understand why people who are generally (and rightly) very skeptical of ME/CFS research findings don't apply the same skepticism to the 'twin peaks' incidence idea. The evidence for that idea is very thin.
  11. Hutan

    George Monbiot on ME/CFS, PACE, BPS and Long Covid

    Moderators have created a new thread: What needs to change to ensure better care for people with ME/CFS with feeding difficulties? for discussion about the policy and implementation environment that continues to influence management of feeding difficulties in people with ME/CFS. There will...
  12. Hutan

    What needs to change to ensure better care for people with ME/CFS with feeding difficulties?

    That's a useful summary. To some extent, we don't have to know for sure what went on in Maeve's case. If there is clinical guidance that is likely to be interpreted as making various forms of assisted nutrition off limits for people assessed by the treating clinicians as having 'functional...
  13. Hutan

    Physical, cognitive, & social triggers of symptom fluctuations in people living with long COVID: an intensive longitudinal cohort study,2024,Greenwood

    Just on the 'trial report' prefix, a response from the moderation team: The trial report prefix is used for interventional studies, so, where a treatment has been trialled. It is fine to have no prefix, plenty of papers don't need a prefix. We understand that there is a grey area, where the...
  14. Hutan

    What needs to change to ensure better care for people with ME/CFS with feeding difficulties?

    Thanks for your replies @Jonathan Edwards and your ongoing work. Just as a side point on sectioning and capacity for decision making (sorry, taking the thread further off-topic): Practice varies, I don't think it is a big deal for some doctors. Having spent a lot of the last year sitting with...
  15. Hutan

    The Concept of ME/CFS

    But it's not just a perception of voluntary action, illusory or not. I over did it for a couple of weeks a few weeks ago, summoning the power to do things while knowing it would probably cost me. My face broke out in a rash of sores. I've had cold sores constantly on my lips, in just the last...
  16. Hutan

    The Concept of ME/CFS

    A subconscious learnt avoidance of unpleasant outcomes does not seem to be a likely explanation for what I experience. It doesn't explain the variability, how one day walking up the couple of steps in the back garden is easy and how another, the power is just not there. I have not had my...
  17. Hutan

    Review ENDOTEXT: CHRONIC FATIGUE SYNDROME, 2023, Lim & Torpy

    That's a bit of a depressing read. It sort of gets some things right, but not quite. As you would expect from a resource for endocrinologists, there is a big emphasis on issues to do with cortisol and the HPA axis. It would be possible to address the many issues in this resource, but it...
  18. Hutan

    Severe ME/CFS: preventing the physical consequences of prolonged immobility

    That's really helpful information @horton6. I'm sorry that you are having to face such a big challenge.
  19. Hutan

    What needs to change to ensure better care for people with ME/CFS with feeding difficulties?

    Thanks to George Monbiot for the article and to those who continue to help inform him. I have already used the article in advocacy. I'm coming late to today's discussion and have only read the posts quickly. I'm sorry if I have misunderstood the arguments made, I'm left a bit confused. I feel...
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