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  1. Squeezy

    Sickness behaviour – useful concept or psycho-humbug?

    Nothing to add to your discussion, people, but every time I look down the list of threads and see, "Sickness Behaviour" listed as a title, I want to bloody scream.
  2. Squeezy

    What treatment trials for ME/CFS are currently ongoing?

    Chronic - all of the above - Syndrome. You nailed it.
  3. Squeezy

    Nimodipine - use in ME

    This is very interesting, thank you @Sly Saint It would be horrendous of them to stop you having Nimodipine, if it's stabilising you, @Dechi. Is the problem the long-term use of it, that's not been researched? Hell, if the alternative is to decline, then isn't it in your best interest to...
  4. Squeezy

    ADHD Drugs for Chronic Fatigue Syndrome - How Well Do They Work?

    I'm too brain dead to read your substantive discussion, but I think it's worth anyone who has serious fatigue alongside their ME, trying stimulants. Carefully. Very carefully. The beauty of them is that you can take a low dose of Ritalin once, and even know from that if it is helpful or not...
  5. Squeezy

    ADHD Drugs for Chronic Fatigue Syndrome - How Well Do They Work?

    My neurologist has great success using stimulants with people who have MS to help with the fatigue that comes with that illness. But when I tried Modafanil, I ended up alert and feeling more capable, but without the energy necessary to follow through. Crash.
  6. Squeezy

    Migraines caused by ME - How to discuss with Neuro?

    Finally! I think I'm on the right track. Decreased brain mitochondrial energy reserve. These mechanisms may induce biochemical shifts, leading, possibly via cortical spreading depression, to migraine attacks by means of activation of the trigeminovascular system. There may be defects in the...
  7. Squeezy

    Esther Crawley

    All I have to say is, "ARRRGGHHHHHHHH!" Thank you for listening.
  8. Squeezy

    Migraines caused by ME - How to discuss with Neuro?

    @Valentijn Fascinating, thank you. Do you have MELAS? I've pondered Mitochondrial Disease, but I'm the only person I know of in 3 generations of my family to be laid up ill like this with anything at all. But of course, I could just be a lucky rare collision of 2 recessive gene carriers...
  9. Squeezy

    Migraines caused by ME - How to discuss with Neuro?

    @Dechi Thanks, that's great advice, and I've done it! Oh, damn. I should have written what I was doing at the time, and how long for. Next time. I saw a great doctor 8 years ago, really open minded and caring. And then he stopped seeing patients to devote his time to research and teaching med...
  10. Squeezy

    Migraines caused by ME - How to discuss with Neuro?

    @Maria1 Thanks so much - I've not heard of this before! I'd love to understand what's going on - it feels like I get a cramp in my brain from using it, the way someone running might get a cramp in a muscle. I've been mulling a theory to do with the way lactic acid is produced in muscles from...
  11. Squeezy

    Migraines caused by ME - How to discuss with Neuro?

    My ME is big on the neuroinflammation side, as evidenced by my chronic migraines. And it's EXTREMELY frustrating that I am fortunate enough to have a neurologist who invites me to appointments every 3-6 months to check on my migraines WHICH ARE CAUSED BY MY ME but I can't find a way to discuss...
  12. Squeezy

    What blood tests would you get?

    Hello @Joan after 10 years with ME, I'm trying to work this out too. I've dragged my feet in pushing forward to get deeper testing which could lead to trying treatments that are out of the NHS type of box. Definitely get him tested for everything @Arnie Pye listed, plus a comprehensive panel...
  13. Squeezy

    Jennie Spotila: Crisis and Suicide

    Seriously excellent. Thank you @Cheshire
  14. Squeezy

    Where to find basic explanation of methylation, MTHFR etc.?

    Thank you so much @alicec. A couple of hours ago I was despairing of my addled ME brain ever grasping this, but your straightforward explanation has helped me enormously. I've tried to wade through Ben Lynch's information, but there's just too much there, and how much is hype? How do we decide...
  15. Squeezy

    B12/Folic Acid and D3/K2 Supplementation

    @Arnie Pye Adenosylcobalamin is entirety new to me. How much do you take of that, and the methylcobalamin? Thanks.
  16. Squeezy

    Help for bedbound aunt

    I'm so sorry to hear about your Aunt's declining health. She is lucky to have such a devoted neice. Lack of B12 causes serious nerve damage and may well be the cause of her POTS-like symptoms. Mine has been a problem to keep up, and I get dizzy, almost black out, and fall over until it's...
  17. Squeezy

    Poll: When during the day do you have the most energy? That is when you are not in relapse, and not sick with the flu

    I used to be best in the morning, around 7:30 to 11am. Able to walk the dogs, maybe, use my brain a bit for health research etc. Then my head would hurt too much to be awake, so it was nap time till around 2pm. Foggy rest of day and evening. Enormous struggle to function physically, if at all...
  18. Squeezy

    ScienMag: Usual antidepressants may not work in patients with chronic illness

    @Arnie Pye Gob. Smacked. If this is true, when we come back to the UK in a year and a half, my husband and I will be quite the windfall for whatever GP practice we join. :woot: I guess they're being paid according to how much appointment time depressed patients are reckoned to take up? I do...
  19. Squeezy

    ScienMag: Usual antidepressants may not work in patients with chronic illness

    I think even doctors forget that our patterns of thinking are affected by deficiencies in the chemicals that power, and constitute, our brains, even while they're prescribing pills that focus on just a couple of neurotransmitters! B12 deficiency can present as depression - I've read a...
  20. Squeezy

    ScienMag: Usual antidepressants may not work in patients with chronic illness

    @strategist if you ever have a grey screen come down over your eyes for days on end, lose enjoyment in almost everything, don't want to eat/eat too much, see no future, feel everyone would be better off if you were dead... Then you're depressed. That's not just "lack of vitality." But are...
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