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  1. Trish

    Neuropsychiatric Manifestations of Mast Cell Activation Syndrome and Response to ...Treatment: A Case Series, 2023, Weinstock et al

    The article gives a huge list of symptoms for MCAS, and a prevalence of 17%. I assume this means they are calling all common allergies and sensitivities 'MCAS'. I looked at the treatment section, which starts with drugs such as antihistamines and goes on to include some less commonly used drugs...
  2. Trish

    Neuropsychiatric Manifestations of Mast Cell Activation Syndrome and Response to ...Treatment: A Case Series, 2023, Weinstock et al

    https://www.mdpi.com/2075-4426/13/11/1562 Abstract Mast cell activation syndrome (MCAS) is an immune disease with an estimated prevalence of 17%. Mast cell chemical mediators lead to heterogeneous multisystemic inflammatory and allergic manifestations. This syndrome is associated with various...
  3. Trish

    Validation of symptom measures in patients under investigation for postural orthostatic tachycardia syndrome (POTS):... 2023 Iris Knoop, Moss-Morris

    I can see the point of cardiologists assessing people for POTS asking about symptoms, and doctors generally learning to recognise symptom patterns that may be caused by POTS, so symptom questionnaires may be useful. I'm not sure what this has to do with health psychology. The use of...
  4. Trish

    Validation of symptom measures in patients under investigation for postural orthostatic tachycardia syndrome (POTS):... 2023 Iris Knoop, Moss-Morris

    The authors are all from the Health Psychology department at Kings, except for one consultant cardiologist.
  5. Trish

    The John Snow Project - Working for better information about Covid transmission, masks etc

    I looked at their website: https://johnsnowproject.org/about/ They are promoting use of vaccination, ventilation, air filtration, high quality masks etc.
  6. Trish

    United Kingdom: ME Association news

    That looks like very good news, provided of course, if they decide to replace it, that the replacement is better. Many thanks to Charles Shepherd.
  7. Trish

    A Girl Behind Dark Glasses - Jessica Taylor-Bearman

    Having read Jessica's first book, it's so heartwarming to hear that she is no longer in the dire state she was then. I hope her improved health continues.
  8. Trish

    A Quick and Practical Approach to Secure a Chronic Fatigue Syndrome Diagnosis: The Novel Functional Limitation Index 2023, Corbalan et al

    Report from a hospital in Spain. Given that the patients had already been diagnosed elsewhere, why were they sent to the "Exercise Physiology Department at our hospital, a dedicated referral unit for CFS"? Presumably for treatment of some sort, GET perhaps. If so, I wonder whether they did the...
  9. Trish

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    I read some of the guide. At first I thought it was pretty good on management of severe and very severe ME/CFS because it includes some of the stuff from the NICE guidelines about needing low sensory and accesible care, side rooms in hospitals, and some needing feeding help including tube...
  10. Trish

    NHS talking therapy recommended for menopause symptoms

    I can't see any point to CBT for menopausal symptoms any more than for ME/CFS. Sure, if someone is finding her life difficult to cope with, some supportive counselling from someone who understands what she's experiencing, along with things like work adjustments may be helpful. But why CBT? Women...
  11. Trish

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    Thanks for the quick response. I think maybe wait until they have further information rather than palguing them with more questions unless you particularly want answers. I was asking more out of curiosity than a need to know. It sounds like they are busy with getting the new study up and running...
  12. Trish

    Editorial: Mind the gap: integrating physical and mental healthcare for children with functional symptoms 2019 Heyman

    Looks from the abstract like Great Ormond Street hospital, which is a specialist children's hospital in London, has written this article to pat themselves on the back for doing everything right, and tell everyone else how to do it. But it's paywalled, so we don't actually find out what they do...
  13. Trish

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    Hi @josepdelafuente thank you for that very helpful report on how it works and how you're doing with it. I'm pleased to hear you got your PIP award and that has enabled you to reduce your workload and pace better and really feel the difference so quickly. From what you say it seems like heart...
  14. Trish

    UK: Health Services Safety Investigations Body

    I suspect they would just say they aren't interested in past problems with GET because NICE no longer recommends it.
  15. Trish

    Open The Living With a Long-Term Condition Study (LTC), King's College London

    My response to this questionniare is that if you weren't feeling miserable about your life with a long term condition at the start of the survey, you are likely to by the end with all those negative emotions being asked about, and the few positive ones being out of reach not because of feeling...
  16. Trish

    Open The Living With a Long-Term Condition Study (LTC), King's College London

    I have now been sent the second stage survey. I have filled it in simply because I wanted to make a note of the questions, which I forgot to do first time around. Here it is: 7. Living with a long-term condition It is normal to feel a range of emotions when living with a long-term physical...
  17. Trish

    Closed UK: DecodeME updates, was recruitment thread.

    @Andy, you and the team have done a fantastic job of providing a well run huge project and making it as accessible and straightforward as possible for people of all severities to participate in. Whatever the final outcome, you can all be very proud of your achievement. Thank you...
  18. Trish

    The Long or the Post of It? Temporality, Suffering, and Uncertainty in Narratives Following COVID-19, 2023, Cheston et al.

    Thanks for listening to our concerns thoughtfully, @kacheston. Best wishes with the thesis.
  19. Trish

    The Long or the Post of It? Temporality, Suffering, and Uncertainty in Narratives Following COVID-19, 2023, Cheston et al.

    Thank you, @kacheston for joining the discussion. It is great to have you here and to be able to clarify your intentions with us. I did read very carefully through your conclusions section before I commented critically. Your article presents well its central narrative of an illness first...
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