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  1. Hutan

    Reflections on Patient Engagement by Patient Partners: How it can go Wrong 2023 Richards, Poirier et al

    I thought this was a very useful paper. It is well written and clear. I'd like to see staff of research organisations and research funding organisations read it. Maybe some of us can forward it to people of that sort that we know. I guess the risk is that it makes such staff even more...
  2. Hutan

    ‘The more outlandish the claim, the more likely it will stick in people’s minds’ – expert’s warning as fake news & cancer ‘cures’ put patients at risk

    We had that example just yesterday of a woman writing a blog about how a vaccination seemed to cure her Long Covid. What wasn't clear to me from the blog initially was that this was just at the 6 month mark. So, a bit like Paul Garner and how he cured himself through sheer mental fortitude at...
  3. Hutan

    ‘The more outlandish the claim, the more likely it will stick in people’s minds’ – expert’s warning as fake news & cancer ‘cures’ put patients at risk

    I agree that support groups could do much more to counter unevidenced claims. Too often we see support groups actually amplifying nonsense. I'd like to see support groups using whatever legislation their country has to stop people claiming a product is useful without good evidence. The...
  4. Hutan

    News from Aotearoa/New Zealand and the Pacific Islands

    A local research organisation that is crowd-funding. You can also volunteer to be part of studies. More here: NZ: Post-Viral Research Aotearoa - research organisation
  5. Hutan

    New Zealand: Dysimmune Research - research organisation

    https://www.dysimmune.nz/ Crowd-Funded Research into Long Covid, ME/CFS & Other Post-Viral Illnesses Hosted at the University of Auckland Immunologist Anna Brooks is the Principal Investigator. Other co-founders have lived experience of ME/CFS and Long Covid. With the people involved, I think...
  6. Hutan

    Can vaccines cure ME/CFS or Long Covid?

    She became ill in Dec 2021 - [edit, as I had assumed her recovery was recent] - she had the vaccinations and followup in April 2022 - so no more than 6 months...
  7. Hutan

    Can vaccines cure ME/CFS or Long Covid?

    For sure, although the author of the blog does acknowledge that. I can understand someone who experienced an improvement around the time of being vaccinated would want to write about it, and who knows, perhaps it is a clue. I'm happy for people to write about most things they think have helped...
  8. Hutan

    News from Aotearoa/New Zealand and the Pacific Islands

    The National Ethics Advisory Committee is recruiting for several members: https://careers.health.govt.nz/jobs/MOH-1708380 This committee has a major role in the governance of research approvals as well as monitoring and providing advice to the government on health services and health research...
  9. Hutan

    ER Stress-Sensor Proteins and ER-Mitochondrial Crosstalk—Signaling Beyond (ER) Stress Response, 2021, Kumar and Maity

    Paraphrasing the paper: Mitochondria are tethered to the ER. During environmental stress, the contact sites become even tighter. Calcium and many structural and apoptotic proteins are shuttled between the organelles. Some mitochondrial proteins can regulate ER stress and Unfolded Protein...
  10. Hutan

    ER Stress-Sensor Proteins and ER-Mitochondrial Crosstalk—Signaling Beyond (ER) Stress Response, 2021, Kumar and Maity

    Relevant to the NIH finding of WASF3 abnormalities as discussed here: 2022: NIH study of mitochondria in ME/CFS- WASF3, WAVE3 This thread may also be relevant: Muscle endoplasmic reticulum stress in exercise, Marafon et al 2022
  11. Hutan

    ER Stress-Sensor Proteins and ER-Mitochondrial Crosstalk—Signaling Beyond (ER) Stress Response, 2021, Kumar and Maity

    https://www.mdpi.com/2218-273X/11/2/173/htm Abstract Recent studies undoubtedly show the importance of inter organellar connections to maintain cellular homeostasis. In normal physiological conditions or in the presence of cellular and environmental stress, each organelle responds alone or in...
  12. Hutan

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    The NIH finding on WASF3 is discussed more here: 2022: NIH study of mitochondria in ME/CFS- WASF3, WAVE3
  13. Hutan

    UK: Action for ME: Media Guidelines for reporting on M.E.

    That issue isn't impossible to manage. Comorbidities are separate diseases that might be able to be treated; I don't think the fact that, for example, pressure bed sores and vitamin D deficiency are a possible outcome of being bed bound and that preventative actions and treatments exist for...
  14. Hutan

    Somatic symptoms in burnout in a general adult population 2023 Hammarström et al

    What came first? The feeling of being overwhelmed with work causes the physical symptoms? Or the physical symptoms reduces the capacity to cope with a high workload? All the usual problems with the measures of depression and anxiety i.e. feeling tired and having low energy and sleep...
  15. Hutan

    Monocyte migration profiles define disease severity in acute COVID-19 and unique features of long COVID 2023 Scott et al

    We've seen prostaglandins mentioned recently in this paper: An airway-to-brain sensory pathway mediates influenza-induced sickness 2023 Bin et al However that paper reported that prostaglandins produce the sickness response (which shares a number of the symptoms of post-viral fatigue...
  16. Hutan

    Intensive Short-Term Dynamic Psychotherapy associated with healthcare reductions in patients with functional seizures 2023 Malda-Castillo et al

    It looks like this study was funded by some NHS Clinical Commissioning Groups, which helps to explain the focus on reduced healthcare usage. (And again I note a Freudian slip - the title talks about 'reduced healthcare', which is surely accurate, while I think they really meant to say 'reduced...
  17. Hutan

    Intensive Short-Term Dynamic Psychotherapy associated with healthcare reductions in patients with functional seizures 2023 Malda-Castillo et al

    On Allan Abbass: He has a personal website titled http://reachingthroughresistance.com It seems that ISTDP is an invention of a Canadian; it is claimed to have outperformed CBT: A CLINICIAN’S GUIDE TO PSYCHOPHYSIOLOGICAL DISORDERS REACHING THROUGH RESISTANCE: ADVANCED PSYCHOTHERAPY...
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