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  1. Kitty

    Is sex worth the pain? Willingness to engage in sexual activity among partnered women with fibromyalgia, 2017, Gullickson et al

    Ummm, I wonder how many gentlemen this applies to? In any case, it's an utterly bizarre attitude, and I'm sorry you encountered it in such a brutal way. Feeling less uncomfortable is the underlying objective of most of the medical interventions people will experience during their lives.
  2. Kitty

    (ME/CFS): Investigating care practices pointed out to disparities in diagnosis and treatment across European Union - Strand, Nacul (EUROMENE) 2019

    Deep engagement with patients in order to shape a country's management recommendations is exactly the sort of thing for which EU funding could and should be sought, especially given that it's very difficult to shoehorn projects like this into many current national funding setups.* It's not an...
  3. Kitty

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    The reason I prefer 'activity' is that it naturally feels more inclusive of mental work. That isn't true in a strict sense, of course; 'mental exertion' is perfectly understandable. But I think for ordinary patients, especially ones new to the illness, 'activity' is a friendlier word that still...
  4. Kitty

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    It also encourages people to think of exercise and activity as different things, which is very unhelpful when you're trying to learn to manage ME. In the last eight days I've swum 1.9 km and put up the Christmas decorations; the later was hugely more demanding than the former, but because it...
  5. Kitty

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    Indeed, but I'd argue it would help us if the word 'exercise' could be banished and replaced by 'activity'. That's a much more inclusive term when it comes to discussing the very broad spectrum of ME.
  6. Kitty

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    No, I can't be sure. I just know that the longer I sleep after 7am, the more at risk I am for a crash that can last for anything from a few really horrible hours to several days. It happened a couple of weeks ago – I'd been kept up late by noise outside, and slept until almost 11am. It took me...
  7. Kitty

    Overdosed with coffee - crashed really badly.

    I must just be used to it, after half a century of a frankly disgraceful cola habit... :whistle: Given it up a number times for an extended period, but it doesn't make that much difference! Hope you feel better soon, @svetoslav80.
  8. Kitty

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    The fact that 'harm' – in the shape of worsened symptoms over an extended period – can be caused by different factors adds another layer of difficulty in establishing causation. For instance, certain patterns of sleep have at times made my symptoms worse than exercise, as have common viruses...
  9. Kitty

    Crossing Chiari and syringomyelia off the list

    It would – but proper engagement and listening could take them a very long way. Case in point: one of our GPs (now retired) tended to brush off ME symptoms a bit, but was deeply sympathetic and engaged about my psoriatic arthritis. Clearly, that was a much more impressive diagnosis. The other...
  10. Kitty

    What is fatigue?

    Just to throw something else in: to me, fatigue and pain are to some extent the same thing. I'm unwell with a virus at the moment, but as my friend had been out and fetched me a Christmas tree, I decided to decorate it. I carried on until the Stop That Right Now fatigue kicked in, and crashed...
  11. Kitty

    Identification of actin network proteins, talin-1 and filamin-A, in circulating extracellular vesicles as blood biomarkers...ME/CFS 2019, Eguchi et al

    Presumably, there's also a considerable lag in learning how to use it to best advantage too? Not to speak of restricted access, exorbitant costs, etc. That's what cheers me about Dr Davis's approach at Stanford: they look for cheap, accessible options rather than trying to design a new...
  12. Kitty

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    According to Wikipedia (not the most reliable source, I agree, and not necessarily even up-to-date), none of the multiple lawsuits against Dr. Bolognese has been resolved. I don't know how common it is for surgeons in the US to face lawsuits, though – it might be anything on the scale from...
  13. Kitty

    Invest in ME: UK Charity Pledges £500,000 for Research into ME in Norwich Research Park

    This is what I assumed, but I don't know for sure. Whenever there's an appeal for a specific project that ends up being shelved, the charity will default to whatever conditions were written into the conditions of the original appeal. It can be as vague as 'furthering the charity's principal...
  14. Kitty

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    (@Trish, the link in the post is to the New York Daily News from 2009. It's not possible to see the content in Europe.)
  15. Kitty

    Open Medicine Foundation (OMF) fundraising

    Especially as the basic rate for out-of-work benefits is less than £74 per week. Not many people could give up more than three weeks' income. There isn't. I wonder if this is due to the collection agency's rules? I'd be surprised if it came from OMF – they know that, for most of us, even a $10...
  16. Kitty

    Pain in ME–what helps you and what can I do?

    Overuse injuries can be exceptionally painful. I had one in my shoulder, and literally couldn't even lie down for months on end (I have hypermobile shoulders that can't be kept in place even with strapping). I've never been so miserable, or in so much pain, for so long. Mine was caused by using...
  17. Kitty

    Pain in ME–what helps you and what can I do?

    Another thought: a friend with fibro has found Ambroxol, an over-the-counter drug used to clear chest congestion, quite helpful. I think this is something she found online; I'm a bit embarrassed to mention it, and as usual due scepticism should be employed, but it could be worth a bit of...
  18. Kitty

    Pain in ME–what helps you and what can I do?

    For me, it depends on the type of pain. Muscle pain = gentle, even pressure or a warm shower. Joint pain = warmth, unless it's a recent injury with swelling, in which case ice is better. Deep aches from over-use or during a cold virus = rest, warmth, and gentle self-massage if possible. The...
  19. Kitty

    Abnormalities in the urine of people with ME/CFS? A clinician asks for feedback

    I agree – if it helps in explaining it, I find evenly distributed pressure on the painful muscle helps. I had it last night in my thigh muscles and lay face-down for as long as I could, which reduced the pain level significantly whilst my painkillers started to kick in. ETA 'I agree'.
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