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  1. Kitty

    Persistent clotting protein pathology in Long COVID/PASC is accompanied by increased levels of antiplasmin, 2021, Pretorius et al

    I think it needs a venous catheter? I remember a relative having one during his treatment. It's presumably fairly routine in hospitals when monitoring some conditions, but it's invasive, so I doubt it's something a local clinic would offer.
  2. Kitty

    ME/CFS services in the United Kingdom

    Yeah, right.
  3. Kitty

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    It wouldn't necessarily mean the text of the guideline, would it? It could mean accompanying commentary or framing, for instance. To me that seems more likely because text changes could trigger a demand for further consultation...but really, who knows!
  4. Kitty

    Let's talk wheelchairs and mobility scooters

    I've only used the type that helps your companion push the chair, when I first started struggling to walk. She said it was a big help, specially uphill. Other than that, my wheelies have always been more about getting out into the countryside than shopping etc (although I do depend on them for...
  5. Kitty

    Safety and efficacy of ampreloxetine in symptomatic neurogenic orthostatic hypotension, 2021, Horacio Kaufmann et al

    Yes, sure: https://www.biospace.com/article/theravance-shares-tumble-after-phase-iii-cardiovascular-asset-fails-to-hit-primary-endpoint/
  6. Kitty

    Safety and efficacy of ampreloxetine in symptomatic neurogenic orthostatic hypotension, 2021, Horacio Kaufmann et al

    Unfortunately the Phase III failed, and the company now faces making a lot of its staff redundant. I know that's how it sometimes goes with drug development, but it must be gutting to put that much effort in and end up with no drug and no job. You really have to feel for them.
  7. Kitty

    Informed Consent

    I think we should expect them to tell patients what is known, without trying to explain what isn't. We know that ME patients say they can't do nearly as much activity as before they got ill, or sustain it for as long. That it takes much, much longer to recover from activity, and that if they...
  8. Kitty

    Let's talk wheelchairs and mobility scooters

    This is the main challenge with scooters. You not only need to tense your legs to keep your balance, you have to hold them in position too. Relaxed, they tend to flop outwards at the knee, which would mean tensing your core to hold you upright instead. It's the reason I went for a wheelchair...
  9. Kitty

    Let's talk wheelchairs and mobility scooters

    Did you borrow a Tramper? They used to let them out at two or three of the Peak District cycle hire places; I last took one all the way around Ladybower before I got my own wheelie. They're hard work compared to a wheelchair, but it is so wonderful to get out. Hopefully you won't feel battered...
  10. Kitty

    "Patient's Charter for ME/CFS/PVFS"

    One of the things we need to include is a full picture of the impact of treatment on our lives. We've all cut activities out when we've been feeling worse, and often they're things we'd never think to mention to a doctor: fewer phone calls to friends and family, not vacuuming for ages...
  11. Kitty

    Improvement Effects of Myelophil on Symptoms of Chronic Fatigue Syndrome in a Reserpine-Induced Mouse Model, 2021, Song et al

    Well, I've got Chinese sage in my garden, and I'm sure I've seen milkwort growing on the allotments...could make myself a small fortune!
  12. Kitty

    What is the evidence for collagen degradation in ME/CFS?

    Or that we need more research on connective tissue diseases, for that matter; there seems to be really quite a lot of research about them. Why can't we just have more research on something we've all actually got?
  13. Kitty

    I need a good summary of the problems with mind-body theory

    Does he believe all of them are partly caused by the mind? Including Parkinson's, dementia, rheumatoid disease, etc? Or is just the ones we can't yet show on imaging or blood tests?
  14. Kitty

    Esther Crawley's presentations (excluding the 2017 TEDx talk)

    The road to Damascus? OK fair enough, it is a ridiculous idea.
  15. Kitty

    Investigating Fatigue and Exercise Intolerance in a University Immunology Clinic, 2020, Ambrus et al

    I wondered about that – 78 people with such rare disorders being referred to one clinic does seem surprising.
  16. Kitty

    Investigating Fatigue and Exercise Intolerance in a University Immunology Clinic, 2020, Ambrus et al

    They're not claiming this, though. The patients were referred to the clinic with idiopathic fatigue and exercise intolerance; none of them appear to have been diagnosed with ME/CFS prior to referral, and the study doesn't suggest that any were found to have ME/CFS after testing. The...
  17. Kitty

    Investigating Fatigue and Exercise Intolerance in a University Immunology Clinic, 2020, Ambrus et al

    No; as far as I can see, none of the patients was diagnosed with ME/CFS. However, 81% had a fibromyalgia diagnosis. Given appropriate testing, it wouldn't surprise me if a small proportion of ME patients did have some kind of metabolic disorder. It would be fantastic to see detailed screening...
  18. Kitty

    A charter to improve ME/CFS research

    Some really good ideas here. I realise it's not always feasible, especially in early exploratory studies, but we need to work towards better-sized cohorts too. With such a heterogeneous condition, can you read anything much from a study of fewer than 20 patients? (Especially when it's a...
  19. Kitty

    Depression pandemic and cardiovascular risk in the COVID-19 era and long COVID syndrome: gender makes a difference, 2021, Bucciarelli et al

    When anyone purporting to be a scientist uses gender when they mean sex, I just stop reading. :rolleyes: Seems to have a good policy when it comes to this abstract.
  20. Kitty

    Study finds potential causality between blood clot factors and migraine with aura

    It does sound as if it's a different condition to mine. I think retinal migraines only affect one eye, usually the same eye every time. This type of migraine is thought to be caused by blood vessels constricting in response to a trigger; mine usually seem to be triggered by hot weather or...
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