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  1. Trish

    Checklist to assess Trustworthiness in RAndomised Controlled Trials (TRACT checklist): concept proposal and pilot, 2023, Mol et al

    It looks like they are only going for the most blatant fraud, not poor methodology. The thing that amazes me most about this article is the number of people and meetings involved in producing it.
  2. Trish

    Checklist to assess Trustworthiness in RAndomised Controlled Trials (TRACT checklist): concept proposal and pilot, 2023, Mol et al

    I haven't read the article yet, but this but from the abstract seemed all wrong: Surely if any single item is rated at major concern level they need to do a through investigation. For example, the main 2011 PACE paper should have been immediately flagged as likely to be useless because of the...
  3. Trish

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    The first one says symptoms are things we perceive, the second says the perception is wrong.
  4. Trish

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

    Wessely et al did the same thing with CFS. He explicitly stated CFS is just new wine in old bottles, the latest fashionable name for hysteria, neuraethenia or conversion disorder. Does that mean CFS by your logic is a 'label stacked on top to make it palatable to patients? It does to Wessely...
  5. Trish

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

    It's not word salad. I enjoyed trying to get my one remaining mathematical brain cell activated to get an overview of what they did. The aim was to see if a particular form of mathematical analysis that has been developed for studying complex processes over time in other situations such as...
  6. Trish

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

    That makes sense to me too. I have tended to avoid getting involved in the FND threads because I don't have the energy to follow all the discussions and it's not an area of medicine I know anything about. I understand the reason some pwME are concerned about FND as a diagnostic label because...
  7. Trish

    BBC podcast: Inside Health - Can Noise Harm Our Health? 2024

    I haven't listened to it. This is the blurb: "From ear-splitting aircraft noise and the drone of traffic to the hum of an open-plan office, the world around us can feel loud. But is it getting louder? And is this having any effect on our health - and even on how long we live? We find out when...
  8. Trish

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

    If FND was a label meaning you have clear neurological signs, but we can’t find anything on your scans that indicates damage to part of your brain or nervous system, then I think if I were diagnosed with FND I would be relieved to know it wasn't a sign of something known to be irreversible and...
  9. Trish

    “They seemed to be like cogs working in different directions”: a longitudinal qualitative study on Long COVID healthcare services in [UK], 2024, Fang+

    I'm not sure what that waffle means. I assume it's saying better services are needed for LC.
  10. Trish

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

    That doesn't seem like a fair characterisation of patients with FND. Just as in ME/CFS, being diagosed and told the only treatment is supportive care is a huge blow when you are suffering from something you don't understand, and nobody else understands, and that makes your life difficult...
  11. Trish

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

    Some posts have been copied or moved to this thread: Functional Neurological Disorder (FND) - articles, social media and discussion
  12. Trish

    SITN: Long COVID: The latest in a series of unexplained post-acute infectious syndromes?

    I think this is a fairly good, though superficial and uncritical, summary of what is known and not known based on a few of the main US sources of information, NIH, CDC, Mayo clinic. It's written by a PhD student.
  13. Trish

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    I wonder how common your experience is. I don't think I've come across anyone else with that pattern.
  14. Trish

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    My distinction between exertion intolerance and PEM is based on symptoms and functional capacity purely. I was not hypothesising about physiology. I have no idea whether they are physiologically distinct or part of a continuum. So what I am saying is, from my experience, and reading what a lot...
  15. Trish

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    I agree with you, but it also happens to people who are deconditioned at a much lower level of activity than in athletes because their level of fitness is lower, so that's the aspect I focused on in my comment. I nearly added 'and in athletes' but that wasn't the point I was making. I think it...
  16. Trish

    'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington

    Hi @JayJay, welcome to the forum. I understand that a forum intended to provide a space for comment on research, including critical comment on claims of efficacy of treatments that are not based on good quality research, is not to everyone's taste. You might find the forum's values help you...
  17. Trish

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

    Several people have had dismissive replies to individual complaints. I leave it to them whether they want to share them. The committee are nearly ready to send our letter to the MEA. We'll make it public after we send it. Also any response we receive.
  18. Trish

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    I think to complete the picture of what happens to people as a result of exertion, we need to also include PEF and DOMS So here's my summary: PEF - Post exertional fatigue: fatigue lasting minutes, hours or a day or two in healthy people, particularly associated with deconditioning DOMS -...
  19. Trish

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    I found this article helpful: Jennifer Huizen: What is exercise intolerance?, Medical News Today, Updated on September 20, 2023 https://www.medicalnewstoday.com/articles/exercise-intolerance#symptoms Some quotes: Examples of conditions that cause exercise intolerance include lung and heart...
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