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  1. Daisybell

    PIP Tribunal

    That’s so bloody unfair... sorry Wonko...:(:banghead:
  2. Daisybell

    Five patients made 8,303 emergency calls in a year - BBC News Website

    I expect that these frequent callers are people who are frightened by their symptoms - be they physical or mental. It just speaks volumes about how large health systems work that sufficient funding can’t be allocated to a specific purpose like this - to support a small number of highly...
  3. Daisybell

    Interviews on ME on Radio Solent

    Welcome @chicaguapa and great work!
  4. Daisybell

    How many hours of sleep a night do you need? - Now with Poll

    I’m usually in bed for a good 8-9 hours, but I wake several times in the night. I suspect my actual sleeping time is closer to 6 hours. I’d like it to be more and I think I would feel better if I could sleep through.
  5. Daisybell

    I was diagnosed with a rare autoimmune disease called "Relapsing Polychondritis"

    So glad this went well - keeping my fingers crossed for your treatment @TrixieStix
  6. Daisybell

    Mike's EU Marathons

    Well done @Mike Harley :thumbup: :party::party: :trophy@:trophy@
  7. Daisybell

    What does your crash feel like?

    Extreme exhaustion Shakiness Feel too hot in my head - my eyelids sweat... Intolerant of noise, light, movement, smells, touch Nauseous Emotionally labile Sometimes tachycardia Chest pain All over soreness Headache Struggle to process information
  8. Daisybell

    Research in progress: A Unified Mechanism for Functional Neurological Symptoms, 2015 to 2018, Edwards et al

    Surely the fact that CBT doesn’t work negates the hypothesis for this study?
  9. Daisybell

    Q&A: Avindra Nath, MD

    Nath sounds like he really has learned from listening to patients - I get a sense that he takes ME/CFS seriously now... :emoji_fingers_crossed:
  10. Daisybell

    Skin crawling/formication

    Thanks everyone - for sharing the creepy crawley love!!! Seriously, it’s good to know you get it too..
  11. Daisybell

    Skin crawling/formication

    This is a gradually increasing problem for me at the moment... it feels like tiny insects crawling on my skin - not everywhere all the time, but seemingly random. So far, I haven’t scratched too much because it’s not really itchy - it just feels as though there’s something I need to brush off...
  12. Daisybell

    Treatment suggestions for Orthostatic Intolerance (POTS or NMH)

    Could that be why so many of us have horrible reactions to adrenaline in injections? (E.g. at the dentist)
  13. Daisybell

    Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT

    But - even if that is the belief - what the data keeps showing is that even if you change what people think, it doesn’t actually change their behaviour. They aren’t more active, they don’t get back to work, they don’t use fewer resources in terms of benefits etc... so that must be seen as a...
  14. Daisybell

    Why don't woodpeckers have brain damage?

    Slightly off-topic (which seems to be what my brain does nowadays...), I have a chook who is over 6 years old. It’s been interesting watching her ageing. She sleeps for most of the time, and if I don’t get her up in the morning, she will stay in the coop and then of course doesn’t eat. When I...
  15. Daisybell

    S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire

    Is there no way to actually have some objective measures in a fatigue questionnaire?
  16. Daisybell

    "Exquisite sensitivity to medication"

    I seem to be ok with most things. Some medications are not ok - I had horrible side-effects from what my GP called ‘homeopathic doses’ of carbimazole, and adrenaline in dental injections and gels is awful. I’ve just had some fillings replaced and my new dentist actually listened to me and gave...
  17. Daisybell

    Are objective outcomes of cognitive function possible?

    @Peter Trewhitt i find my spelling deteriorates significantly when I am feeling bad. I transpose letters/leave letters out etc. Normally spelling is not a problem at all. I am also now unable to read any book requiring significant concentration. I can manage lightweight fiction when I’m feeling...
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