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  1. Kitty

    Muscle AMP deaminase deficiency

    I've wondered about that, too, but it doesn't always cause symptoms – apparently some elite endurance athletes have it too. I suppose it might have more effect in combination with another variant somewhere else?
  2. Kitty

    When to see a doctor about loose stools?

    I wouldn't have been on the suspected cancer pathway, then, as I didn't meet any of those guidelines and I waited a good couple of months for the lower endoscopy the first time around. I can't recall the second quite as clearly, but I'm pretty sure it wasn't within a fortnight (I'd have been...
  3. Kitty

    When to see a doctor about loose stools?

    I was referred twice in two and a half years without this. It's definitely worth going to your doctor and, as @adambeyoncelowe says, focus only on the bowel issue. If you haven't had it before as a symptom of ME, it probably isn't. I really struggled with it for more than four years, but my...
  4. Kitty

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    I'm not familiar with it, but there's a list of his studies here in case anyone recognises the title: https://me-pedia.org/wiki/Research_studies_of_Leonard_Jason
  5. Kitty

    Researcher Interactions Patient Representative Reports from Dr Karl Morten's collaborative group, Oxford, UK

    Especially since the immune component seems to be oddly specific for many of us, usually presenting as pharyngitis. I have it today after swimming a bit too far yesterday. My throat glands are twice their normal size and feel very hard, but none of the other lymph glands appear to be affected...
  6. Kitty

    Perturbation of effector and regulatory T cell subsets in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (2019) Karhan, Unutmaz et al

    It'd be great if these findings can be replicated with a larger group and in more than one lab. I imagine that interpreting the T-cell perturbations will be complex work and subject to a lot of debate, but if the specific 'ME profile' held up in even 60% of patients, it would be a big step forward.
  7. Kitty

    Action CIND Webinar: "Why Working out Doesn’t Work" by Workwell Foundation

    Interesting – the short-term and long-term symptoms ring true for me (albeit with some additions to the short term list, e.g. swollen glands and constant trips to the toilet), but I'd only get the immediate symptoms if I'd really, really overdone it. If I've only done enough activity to cause...
  8. Kitty

    Mike's EU Marathons

    That is amazing – and so much money raised. What a guy!
  9. Kitty

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    I find all this incredibly irritating – I've never had it from a doctor, but before I was diagnosed, lots of colleagues suggested dietary 'solutions'. (Luckily, it did stop once I knew what was causing the symptoms.) However, I am curious about the odd intolerance to glucose experienced by many...
  10. Kitty

    Options for genetic testing

    Before you decide, it might be worth asking whether this kind of testing will tell you anything reliable about your ability to absorb or utilise B vitamins. Having a particular variant may not determine how your body works, as genetic traits often have highly variable penetrance, and there may...
  11. Kitty

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    @Jonathan Edwards – don't you see the window containing the survey?
  12. Kitty

    IDO2 gene mutations - SNPs

    I have to go out, but I'll do this one because it's fairly straightforward: The symbol '>' is used to indicate 'greater than'. So 9>8 just means 9 is more than 8. '<' means 'lesser than' in the same way. T>C usually indicates that more people in the sampled population have the T allele than...
  13. Kitty

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    I think this is the right approach. There must be a lot of people whose only 'evidence' is a sentence in their GP records written many years ago, which is copied to their list of diagnoses and meds. Given the lack of objective tests, it isn't really evidence anyway.
  14. Kitty

    Perturbation of effector and regulatory T cell subsets in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (2019) Karhan, Unutmaz et al

    I have a friend with MS, who I've realised was due to have several infusions of this same drug – she'd told me the generic name, which is why I didn't recognise it. It was then put on hold whilst some kind of safety review goes on, and she now has no idea whether or not she'll be able to have...
  15. Kitty

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    The fact that this is a genetics study might at least reassure people that it's nothing to do with the BPS brigade? I agree that ME patients are factionalised (why wouldn't we be, given our history!), but we just have to keep explaining. No study will meet with everyone's approval, but I sense...
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