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  1. Subtropical Island

    Toni Bernhard - How to Respond to Unkind Remarks When You’re Chronically Ill

    I'm so glad to hear it! I need to get the nerve up to do this. I'm one step closer now. To be honest, I'm afraid of telling anyone about ME in relation to me. I tend to say very little about what's happening to me and find it easier. I thought the Maddie cartoon would be great when I first saw...
  2. Subtropical Island

    A randomised controlled trial of the monoaminergic stabiliser (-)-OSU6162 in treatment of ME/CFS (2017) Nilsson et al.

    Might not be the right place to say this but I have been thinking more and more that depression is a symptom and not a diagnosis. There are various mechanisms for it to occur and one of them might be that thing people refer to as Real Clinical Depression (someone here will have the best name)...
  3. Subtropical Island

    Article: Not everyone with a disability wants a cure – nor should we expect them to

    Thank you TiredSam, I wasn't going to read it (still need to be selective on days when I have reading spoons) but, you're right, good article. Sorry @Andy I ever doubted you. Thanks.
  4. Subtropical Island

    Glutamine, Glutamate & Glutathione

    Thanks for all of this. I found myself giving a really long rambling reply with lots of personal details and then realised this is not the members only section. And I don't want to hijack the thread. But very useful, and in many ways relevant to me. Will try again with my reply when my brain is...
  5. Subtropical Island

    Glutamine, Glutamate & Glutathione

    Edited to remove personal queries and stick to the point: Not sure myself. My thought is that if protein can make it through then some of the other nutrients will be similarly challenged in getting absorbed. You make me realise that the question why might that even happen needs to be answered...
  6. Subtropical Island

    Microbiome testing reports discussion

    I agree with your first half but not with the last para. I don't think we can segment the population based on food sensitivities. I think it's a parallel discussion. I also think that food sensitivities tend to confound the point that the microbiome might be affecting, even effecting, our...
  7. Subtropical Island

    Microbiome testing reports discussion

    My thoughts too. I have done some thinking about FMT as a possible worth it thing to try myself but get stuck at the who should the don't be stage. Hubbie is young enough, fit, healthy, great family, long lived most relatives, few congenital conditions nor depression nor similar issues in the...
  8. Subtropical Island

    Toni Bernhard - How to Respond to Unkind Remarks When You’re Chronically Ill

    Nice list (in the link labelled 'here'). I'd love it if more people used them. Except 8, 11, and 12. They're not awful but I'm just tired of, and therefore over sensitive to, any implication that I should be getting better soon or doing more. I say that to myself too much already so hearing it...
  9. Subtropical Island

    ‘Healthy Privilege’ – when you just can’t imagine being sick

    Oh, and I loved my digital tracking device. It meant I didn't have to remember to log activities, nor focus on illness and symptoms when I didn't have to. I wore it 24/7 and it meant I had objective logs instead of just my word for it (a huge part of taking it seriously and learning to manage...
  10. Subtropical Island

    ‘Healthy Privilege’ – when you just can’t imagine being sick

    “Healthy privilege allows healthy people to assume that their experience is ‘normal’, and to be unaware that coping strategies that work for them will not work for someone dealing with illness.” This stood out. (ETA: Though I agree that I dislike the name calling inherent in the 'healthy...
  11. Subtropical Island

    Glutamine, Glutamate & Glutathione

    Haven't read to the end so will delete if double up. If my protein and fat digestion is not functioning well (much of it goes straight through), does this mean I don't get glut... this stuff? (Bad brain day, gone out to lunch, will understand you when it comes home. No need to dumb down answer...
  12. Subtropical Island

    Involuntary movements: Seizures, tremors, tics, twitches, myoclonus

    Could you put this in the supplements/treatment section for discussion? I'd love to know more and have some other forum members' comments and insight on it. [I have taken these as supplements at need and suspect they really help but am not confident in my results as there are always so many...
  13. Subtropical Island

    Involuntary movements: Seizures, tremors, tics, twitches, myoclonus

    Deleted (rambling) Yes, increased shaking, tremors and pins and needles are good early warning signs of a crash (PEM), and ease (partially) when resting most of the time. Still in my first year or so. @Invisible Woman 's comments match my experience.
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