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    NZ - Complex Chronic Illness Support - Towards Wellness course

    The Law of Attraction - what a load of sh**. Surely this is against the ethical guidelines of the Counselling Association? This sort of thing could do untold harm to vulnerable people.
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    NZ - Complex Chronic Illness Support - Towards Wellness course

    From @Hutan 's quote Was I really living my life in such an unusual way before I got sick? Nope, don't think so. Yes, I did work hard, but so do lots of people. If what she says is true then surely a lot more people should have ME? Methinks the lady doesn't really understand the difference...
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    Remission when ill with other infections?

    Me too. I also have a history of autoimmune illness going back to young childhood. However, when I catch a cold or flu I get very mild symptoms of it for a day or so, no relief from ME symptoms and then I crash really badly, while all the cold and flu symptoms completely disappear. Sometimes...
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    ME Association Quick Survey Nov 18: Do you have a healthcare plan that is consulted, adhered to and kept up to date...?

    The snag with that, given the current scenario, is that almost any treatment may have harmed patients. In the same way that you will nearly always find someone who will claim any treatment has helped. When seeking opinions I think it's certainly worth getting both positive and negative...
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    NSAIDS (Nonsteroidal Anti-Inflammatory Drugs), e.g. Ibuprofen, Aspirin

    I can't handle naproxen as it gives me severe stomach pain. I have tried ibuprofen and paracetamol, but only in standard doses. I have yet to find any painkiller that helps with the severe ME pain.
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    Hysteria revisited: medicine, psychiatry and the ME wars

    What a load of old..... Some people are far more sensitive to fumes than others. For a couple of years I complained that I sometimes smelled gas in our house. It made feel a but sick and headachy, but the smell wasn't there all the time and no one else could smell it. Eventually, we were...
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    The Chronic Elephant blog by hellytheelephant

    Gentle :hug: to both of you. Sometimes you need a friend to just sit with you and listen. Keep you company as you plumb the depths rather than beating you about the head with rope ladders made out of clichés. Perhaps, sometimes people need try to push positivity on others to make themselves...
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    The Triumph of Eminence-Based Medicine - Brian Hughes

    Brilliant. I've had a rough week and that has put a smile back on my face.
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    ME Association Quick Survey Nov 18: Do you have a healthcare plan that is consulted, adhered to and kept up to date...?

    I think that would be wonderful and should be available to everyone. One of the things that worries me about some advocacy efforts is that sometimes people ask for more treatment and access. I worry this is open to, and has been misinterpreted, as wanting more of the same. It feels nitpicky...
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    ME Association Quick Survey Nov 18: Do you have a healthcare plan that is consulted, adhered to and kept up to date...?

    Well, that really rather depends on the GP, I think. In an ideal world you could get in touch if you got a new symptom or one became much worse and have it addressed, but with the roll out of IAPT it could give them just the excuse for a referral. I know I am taking the negative stance here...
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    ME Association Quick Survey Nov 18: Do you have a healthcare plan that is consulted, adhered to and kept up to date...?

    I would choose "No - never asked" . The thing is though, given the current NICE guidelines I don't want one. I spend my rare GP appointments perched on a high tightrope. On the one hand minimizing symptoms so they won't decide to try to ship me off to a clinic that best case will just waste...
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    Open Volunteers Needed for Stanford Neuroinflammation Study

    Is this the same study as this one @MeSci? https://s4me.info/threads/volunteers-needed-for-neuroendocrine-system-study.6430/
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    Survey on stigma around ME

    There is indeed and we have been bitten on the behind by things like this before. I believe Rhi is female and uses the phrase "having had ME" herself. I don't know what this means. Did they have it and recover - happy for them if so. Did they recover using the lightening process? Something...
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    Survey on stigma around ME

    I had a quick look. It is a short survey - just 7 questions. However, some of the questions could take considerable thought and quite a long answer - such as how do you describe it and why do you believe there is stigma.
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    Graded exercise therapy for ME/CFS is not effective and unsafe. Re-analysis of a Cochrane review (2018) Health Psychology / Vink

    I know what you mean @obeat, but it looks to me that the very concept of the PACE trial was biased as it was designed to simply try to prove that you could push patients off the books in terms of benefits etc. They missed so many opportunities to learn about PEM, because they had no interest...
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    Graded exercise therapy for ME/CFS is not effective and unsafe. Re-analysis of a Cochrane review (2018) Health Psychology / Vink

    I think this is a good point and here's where their COIs and the bias they create come in. It seems to me they were not trying to find an effective treatment or cure for ME/CFS. If they were they would have done it differently. It is more that they were trying to prove if you push these...
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    Graded exercise therapy for ME/CFS is not effective and unsafe. Re-analysis of a Cochrane review (2018) Health Psychology / Vink

    The snag here is delayed PEM, in my case it can be up to 3 days. So I would ideally need a three day gap. Typically, if I haven't been hit by payback by the third day, I've gotten away with it. It took a very long time for me to figure that out and so I was unwittingly putting myself in...
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    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    I have no idea of what goes on behind the scenes here and I am struggling a bit to keep up. With the deck seeming to be stacked so heavily against us I wonder if we should make our concerns known by way of open letter, signed in petition manner. It might not do much this time round, but in...
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    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    In the UK they would need to be very careful. Children with ME aside, making complaints could easily get you referred to a MUS clinic (if you hadn't been already). It might affect what they out on your records, if it becomes a psych diagnosis then that will follow you forever and colour every...
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