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  1. Peter T

    Evaluation of Immune Dysregulation in an Austrian Patient Cohort Suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2021, Lutz et al

    I deliberately have not looked at the article itself because I want the possibilities of a diagnostic test and a treatment to last a little longer in my imagination, before it goes back to just being a potentially interesting result that requires a lot more research.
  2. Peter T

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    It does seem odd to phrase it in relation to physicians rather than health care workers more broadly, though if it is accepted for one sub group it would be hard to such deny recognition to other workers in the same setting at equal or even higher risk. Also it then raises the issue for care...
  3. Peter T

    Loneliness, loss and regret: what getting old really feels like – new study 'The Conversation' Carr & Fang 09/2021

    I am aware of a couple of examples in the UK where local authorities have taken over guardianship of an elderly persons’ financial affairs, one in relation to mental health and the other in relation to a severe stroke, to the apparent significant financial disadvantage of the people involved...
  4. Peter T

    Concerns about Cochrane

    Grim reading.
  5. Peter T

    Physiotherapy for functional motor disorders: a consensus recommendation, 2015, Nielsen et al

    The links to this article cited above A practical review of functional neurological disorder (FND) for the general physician https://www.rcpjournals.org/content/clinmedicine/21/1/28/tab-article-info and the full text as a pdf...
  6. Peter T

    Physiotherapy for functional motor disorders: a consensus recommendation, 2015, Nielsen et al

    There is also a parallel piece on for Occupational Therapists Nicholson C, Edwards MJ, Carson AJ, et al. Occupational therapy consensus recommendations for functional neurological disorder. J Neurol Neurosurg Psychiatry 2020;91:1037–45. https://jnnp.bmj.com/content/jnnp/91/10/1037.full.pdf
  7. Peter T

    Physiotherapy for functional motor disorders: a consensus recommendation, 2015, Nielsen et al

    There was also some discussion of this in the thread Management of functional communication, swallowing, cough & related disorders: consensus recommendations for speech & language therapy, 2021, Baker...
  8. Peter T

    Long COVID Patient Symptoms and its Evaluation and Management, 2021, Sundar Shrestha and Love

    I am not sure if this is a result of my cognitive difficulties, but my initial thought is that this is a sensible and clearly written account. Has something gone wrong in that we have authors on Long Covid not spouting waffle.
  9. Peter T

    Lumpers Versus Splitters: Analysing the Effects of Soothers on Fibromyalgia and Chronic Fatigue Syndrome, 2021, Crowe (M.Sc. Thesis)

    On a different tack, I find the issue of ‘lumpers’ and ‘splitters’ an important one. If we are to effectively interact with the world we need to distinguish appropriately between many things, for example it might be essential for survival to distinguish between domestic cats and big cats such as...
  10. Peter T

    Lumpers Versus Splitters: Analysing the Effects of Soothers on Fibromyalgia and Chronic Fatigue Syndrome, 2021, Crowe (M.Sc. Thesis)

    How on Earth can this simultaneously arbitrary and patronising list be regarded as containing related items? This study is yet another pointless exercise in deciding in advance what you want to conclude and then twisting your data to achieve that? How does having appropriate clinical...
  11. Peter T

    United Kingdom: Invest in ME news

    Invest in ME Research have today published a strongly worded piece particularly critical of the current NICE secrecy and their potential partiality. NICE Guidelines Development 2021 - A Time to Step Back? see https://www.investinme.org/IIMER-St...e4SERnWrSaZ01b1Lds9nWlyR2_pH6TisTubcd79Bk0vsU...
  12. Peter T

    2021: Communications between NICE and the S4ME management committee about the paused NICE ME/CFS guideline

    Under the new guidelines as per the November 2020 draft, existing specialist services would be able to continue much as they are, just relabelling their GET as activity management sneaking rehabilitation in under the idea of ‘pacing up’ and relabelling their CBT as supportive, which in theory...
  13. Peter T

    2021: Communications between NICE and the S4ME management committee about the paused NICE ME/CFS guideline

    Also our collective voice is one determined to articulate current reality, not the false optimism of rehabilitation for rehabilitation sake, even when the only evidence we have is that it does not work. The majority of us will continue significantly disabled [corrected typo] for the foreseeable...
  14. Peter T

    2021: Communications between NICE and the S4ME management committee about the paused NICE ME/CFS guideline

    Thank you to the Management Committee and those in the NICE guidelines subgroup and those members involved in various roles with the NICE guidelines group and process. It has become a nightmare situation, but I appreciate you are working to your best abilities within the infuriating constraints...
  15. Peter T

    United Kingdom: Kings College London; South London and Maudsley NHS Trust

    The Kings’ piece finishes with “Most importantly, there is now a climate of hope around CFS, which was unthinkable just a few years ago.” And who is experiencing this ‘hope’, certainly not patients over the last two weeks, when a handful of eminent BPS clinicians are a being allowed to derail...
  16. Peter T

    PEM discussion thread - post-exertional malaise

    I can not say when orthostatic issues began for myself, just when I became aware of them. It could be mild orthostatic intolerance fed into fatiguability or subsequent PEM much much earlier than I was aware of but because by itself it was not a limiting factor on what I did, ie there was nothing...
  17. Peter T

    PEM discussion thread - post-exertional malaise

    I suspect we are seeing both an immediate response to orthostatic intolerance, that is distinct to PEM and is more akin to what we have elsewhere described as increased fatiguability, that is those situations were activity results in fatigue much more rapidly than it would have been...
  18. Peter T

    Non-hospitalised Children & young people (CYP) with Long Covid (The CLoCk Study), 2021, Stephenson and Crawley

    Persistent symptoms at 15 weeks is not necessarily an indicator of clinically significant levels of Long Covid. We need to know about severity and range of the symptoms as well. For example a friend who had Covid some fifteen months ago still has an impaired sense of smell, but this has no...
  19. Peter T

    GAS (Goal Attainment Scaling in Rehabilitation), GAS-light, and gaslighting.

    Sorry to perpetuate this tangent, but the one that always puzzles me is the related insistence that trauma victims and the seriously ill remain awake. The only reason for this I can think is that it enables those treating to monitor mental state and levels of consciousness, though my first...
  20. Peter T

    GAS (Goal Attainment Scaling in Rehabilitation), GAS-light, and gaslighting.

    Though the inspiration for the term ‘gaslighting’ is the original book and film, the question is when it came into use both in academic and in popular media, as already pointed out by @Jonathan Edwards . I had thought it had been in general usage as far back as the 1970/80s, but wonder now if I...
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