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

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

    I'm so sorry to hear you're in this impossible situation. Some thoughts....do people in the US routinely abandon wooden pallets by the roadside, etc, from where you can pick them up for free? If I were having to sleep out, I'd do my best to build a sort of bed box (with sides and ends as well...
  10. Kitty

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

    This Sci Hub link seems to work (in the UK, anyway): https://sci-hub.tw/https://www.sciencedirect.com/science/article/pii/S0889159119307627
  11. Kitty

    Immunoglobulin G structure and rheumatoid factor epitopes, 2019, Maibom-Thomsen

    I love those 'headslap' discoveries – they make scientists seem much more human! (I feel as if I'm from a different planet to people who can grasp scientific and mathematical logic.)
  12. Kitty

    PEM for those who are, or were, mild sufferers, how would you describe it?

    'Virus that's not a virus' really chimes with me. I feel as if I'm coming down with a cold, but it never quite materialises. I also think the pattern's much more important than a list of symptoms, specially for people who're still working or studying. • Keeping weekends clear to rest •...
  13. Kitty

    Still to open How to make patients who aren't engaged in the patient community aware of studies recruiting?

    I've had another thought. It's probably so idiotic that people will throw crockery at me, but just in case there are ways to automate it at low cost... Lots of people are interested in their own genetic data. Some of us may have had one type of sequencing or another done, and I'm sure lots of...
  14. Kitty

    Still to open How to make patients who aren't engaged in the patient community aware of studies recruiting?

    Another possible way forward is to encourage the engaged patients to act as nodes in the network. For instance, I have seven friends with ME, and three of them might well not pick up information about a study like this. One doesn't use social media or take part in forums, and is selective about...
  15. Kitty

    Still to open How to make patients who aren't engaged in the patient community aware of studies recruiting?

    The answer should probably be the same way as for other conditions, through primary healthcare or hospital specialists. But since many patients avoid engagement for obvious reasons, and far too many doctors aren't interested in ME, that's not really viable. Social media is one potential avenue...
  16. Kitty

    How could the EU best advance research into ME/CFS?

    I agree, overtraining is potentially an interesting area. There are some very good sports scientists at Loughborough University, who probably know as much as anyone about it. Personally, I'd like to see some strategic thinking about what research avenues look most promising, work on how to...
  17. Kitty

    Towards an institute for patient-led research - Trish Greenhalgh, BMJ blog November 12, 2019

    Arts Council England created several of these, when someone decided that purchasers of arts provision for children & young people (schools, mostly) needed to be 'put in touch' with artists. Doing so, they said, would enable more and better art to happen. They created bridge organisations, full...
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