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  1. Kitty

    BMJ editorial: Updated NICE Guideline on chronic fatigue syndrome, 2020, Stokes and Wade

    Great letter – thank you. I wonder if a small clarification is in order with these last two sentences, as it appears that some people described as having Long Covid may have organ damage in addition to (or rather than) post-viral symptoms? Something like: What is particularly important now is...
  2. Kitty

    Associations Among Nitric Oxide and Enkephalinases With Fibromyalgia Symptoms, 2020, Aguilar-Ferrándiz et al

    "These results suggest that pain, which is the main symptom of this syndrome, may be related to alterations in nitric oxide levels and in oxytocinase and EDA activities in patients with fibromyalgia." [My bolding.] So why the inclusion of an anxiety inventory? I've no idea whether this work...
  3. Kitty

    Occupational therapy and ME/CFS

    When you have some spare energy (ha! I know that's a joke), it might be worth starting to note any near misses or incidents were using the stairs or the bath puts you in danger? Then you could have another go at it. I had no idea how many falls, stumbles, or collisions I had until I was asked...
  4. Kitty

    Occupational therapy and ME/CFS

    The various OTs I've worked with have been helpful; I probably ought to add, though, that none of them have made any progress at all on trackpad use, when you have a cat that insists on head-butting and squirming her way underneath your arm so you have to work with your elbow stuck out at a...
  5. Kitty

    Measuring improvement and deterioration in ME/CFS (2020) Kirke

    Worked for me – thank you! Excellent letter. :)
  6. Kitty

    DecodeME - UK ME/CFS DNA study underway

    I read through the FAQ on the website this morning, which says it might possibly be delayed slightly due to the change in lead centre on recruitment.
  7. Kitty

    Occupational therapy and ME/CFS

    In some areas, you self-refer – that's certainly true in our part of the midlands. You ring a central contact number that's published online, talk to someone about what type of assessment you need, and they arrange the appointment. You may be able to find this out from information published...
  8. Kitty

    Potential causal factors of CFS/ME: a concise and systematic scoping review of factors researched, Larun et al, 2020

    ...and someone should invent a typeface that shows you need to read the thread title in Janey Godley's Glasgow accent. The Et's a' shite! thread.
  9. Kitty

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

    "It’s why the doctor — who has been prescribing exercise “forever” for patients recovering from an illness — is changing his advice for the first time in 20 years." FFS! Nobody who knows the first thing about exercise would recommend it to anyone still recovering from illness. The volunteer...
  10. Kitty

    The Prospects of the Two-Day Cardiopulmonary Exercise Test (CPET) in ME/CFS Patients: A Meta-Analysis, Eun-Jin Lim, 2020

    It’s great that the work has been done, but surely 2-day CPET in its current form is never going to be useful as a diagnostic tool? Putting aside the ethical and practical issues, most ME patients aren’t going to get anywhere near VO2 max. I can barely get out of breath before my muscles start...
  11. Kitty

    Occupational therapy and ME/CFS

    :eek: :walkingdead
  12. Kitty

    Occupational therapy and ME/CFS

    Gosh, that's horrible – I've never had it from any of the whole bevy of 'em that I've worked with! They were all focused on how to do what you need to do without making yourself worse, and if it's still too much, question whether those things really are essential. They persuaded me after a...
  13. Kitty

    Occupational therapy and ME/CFS

    In my experience of NHS treatment, OTs are the only healthcare professionals who understand how to deal with fatigue. They also know that people's natural response to post-viral illness is not to become fearful of activity, but quite the opposite – they always try to do too much too soon. I've...
  14. Kitty

    Opinion piece: "Am I disabled?" by Joanne Limburg

    I've only ever used a ferry once, due to a tendency to suffer from sea sickness even only dry land. It was the Oban to Mull boat. I'd been dreading it, visualising something about the size of a fishing trawler, but the vessel that pulled into the harbour was the size of a modest multi-storey...
  15. Kitty

    Opinion piece: "Am I disabled?" by Joanne Limburg

    Really interesting, thank you. I've often wondered which box I'd tick if I was only being asked about my autism (I still haven't decided).
  16. Kitty

    Raynaud's Syndrome in Fibromyalgia and ME/CFS

    I thought it was just common, full stop.
  17. Kitty

    COVID-19 vaccine: UK regulators warn people with history of 'significant' allergic reactions not to have Pfizer/BioNTech jab

    If you're allergic to eggs, this would make sense – some variants of 'flu vaccination are grown on in eggs. This current year's wasn't, but from memory I think at least the previous four were.
  18. Kitty

    COVID-19 vaccine: UK regulators warn people with history of 'significant' allergic reactions not to have Pfizer/BioNTech jab

    You could wait for a different type of vaccine to be approved? The allergic reaction is thought to have been driven by the presence of 'foreign' mRNA in the body. The Oxford/AZ vaccine, for instance, uses a completely different approach, and because it doesn't have such demanding transportation...
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