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  1. 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...
  2. 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...
  3. 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.)
  4. 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...
  5. 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...
  6. 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...
  7. 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...
  8. 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'.
  9. Kitty

    An idea for a new approach to research

    I agree that studying changes of status is likely to be useful, and we'll be able to do at least some of this much more easily in the near future. Various researchers have been working on wearable technology that might be able to pick up changes of signal – e.g. in sweat. This might not only...
  10. Kitty

    B12/Folic Acid and D3/K2 Supplementation

    Me too! Mine started long before ME, and I think there are several possible causes. It might even be connected to my autism, I'm not sure.
  11. Kitty

    B12/Folic Acid and D3/K2 Supplementation

    I like this observation. So very true. I have confirmed B12 malabsorption, and inject myself. Since the deficiency symptoms were sorted out, I've never noticed an energy boost from my injections – I often feel unusually wiped out the day after. Whilst I was deficient, my energy levels were...
  12. Kitty

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

    When I read research like this it always strikes me that the 'something in the blood' mystery is going to prove hard to unpick until we find ways to study the process of PEM. If the fabled Something is found in everybody's blood because it's perfectly normal, and the real problem is that it's...
  13. Kitty

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

    I can't really tell whether there's a change in smell, because it's masked by the BCAAs I take to help me reduce PEM symptoms. (The supplement contains B6, which is well known for making urine smell fishy.) I need to pee every 20 minutes if I do go into PEM, but I'd assumed it was partly due to...
  14. Kitty

    Constant yellow phlegm (with poll)

    I do, from post-nasal drip. I've had it much of my life, certainly long before ME. It's exacerbated, though, by my own insistence on occasionally eating dairy, to which I'm now intolerant. :banghead: (Lactase supplements mean I can digest it without discomfort, but it doesn't stop it making me...
  15. Kitty

    MEAction: "DEMYSTIFYING THE DIAGNOSTIC CRITERIA FOR ME AND RELATED DISEASE"

    My impression over the years has been that it's remarkably good under the circumstances. GPs might not receive all the training we'd hope, but they develop keen instincts; of course people are still missed and misdiagnosed initially, but that's surely the case for dozens of conditions. Whether...
  16. Kitty

    Science minded people--help me engineer a simple structure to stay warm?

    Bee thinking back to my hiking and camping days (40 years ago, so they're buried deep!) We were taught to wear a different set of clothes at night than during the day. There'll always be some vapour from respiration and sweating, and getting damp is the best way to get cold. Hang out the set...
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