• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. T

    How do you amuse yourself during the day?

    That's one trippy kaleidoscope!.
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    How Low Does Your Blood Pressure Go?

    I have had low blood pressure problems since I was a child, years before coming down with ME at 18. I was constantly fainting, but it became chronic when I turned 16. Makes you wonder about the whole heart theory and ME and if we were all destined to get ME.
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    How do you amuse yourself during the day?

    http://www.youtube.com/watch?v=SKdVq_vNAAI&feature=related
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    How do you amuse yourself during the day?

    Thanks Graham. No, musical instruments aren't my style. Glad to hear you are having fun with learning though!. We got Red Dwarf here in OZ, so I know who you are talking about.
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    Starting up an international prayer day for ME...

    I understand what you are saying Wayne, but speaking from a Jesus point of view (not other beliefs) - it just doesn't work like that, prayer nor Jesus don't get in our way of doing what we want but life or circumstances certainly do. There is no way that prayer was stopping him from getting the...
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    How do you amuse yourself during the day?

    I did that few years ago and it was lot's of fun. I couldn't do it now though I would just sit there with a "huh" look on my face when someone spoke to me. Even other ME sufferers can mistake a fellow sufferer as being "simple". Your group sounds great! :Retro smile:
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    Long Term Antibiotic Treatments

    This idea has been around since the mid 1990's. I was offered long term antibiotic treatment back in 1995, but said no way to it because I didn't want to become resistant to them. I knew a few people that did do it, but it didn't improve their health at all. This comes from the theory that ME is...
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    Discussion of the NEW International Consensus Criteria

    The thing is there are bucket loads of historical info on ME - real ME and that along with the ICC is what we need to go by. For my illness, even when I went into remission, I still had PENE, just on a far lighter level. The other thing is that I truely believe XMRV is not ME and is another...
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    Discussion of the NEW International Consensus Criteria

    Her response is annoying!. I trust the experts, if you don't have PENE you don't have ME, that's not rocket science is it?. We will never get anywhere unless true ME is clearly defined and the people that don't have it are cut out, as painful as that may be for some, it clearly shows they were...
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    Professor Hooper's response to BBC Radio 5 ME programme

    Great response, as usual. Go prof hooper.
  11. T

    reactive hypoglycemia -- causes and treatments?

    I did, it started 2 years before I got ME.
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    reactive hypoglycemia -- causes and treatments?

    I have found that following the paleo diet has helped my hypogylcemia bigtime. No grains, legumes, starchy carbs, milk, sugar, caffeine and processed foods. Paleo is recommended to people with type 1 diabetes, type 2 diabetes and those with insulin resistance. There are several studies that back...
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    Starting up an international prayer day for ME...

    Thanks, will PM you shortly once I have thought it through a bit more. I will set up a facebook page for this as well in the next month or so and try to get as many people interested and their churches. I guess the best way to get this off the ground, like awareness week, is word of mouth.
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    Starting up an international prayer day for ME...

    Thanks for the positive feedback.
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    ICC Advocacy

    It is truely the merry go round disease. The illness formerly known as ME, now formerly known as CFS and known again as ME. I think sending it to all doctors you have seen that didn't believe in it is a good idea as is contacting the CDC. How did the CDC get word out to doctors worldwide in...
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    Aussie Disability is going to be changed again

    It is...but think of all those poor people with this horrid disease trying to get on it. You are meant to get 40 points now to qualify, not the old 30. The whole thing is a joke.
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    cfs/me symptoms getting worse or cold/flu???

    LOL it's too late anyway! It's well and truely a mucus thread now.
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    Hendra virus spreads to dog in QLD

    Dusty the dog has been put down by his owners, they did it before biosecurity forced them to do it. How sad. http://www.news.com.au/national/fearon-family-make-heartbreaking-decision-to-have-dusty-the-dog-destroyed-after-he-tested-positive-to-hendra-antibodies/story-e6frfkvr-1226105485583
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    Starting up an international prayer day for ME...

    IVI - I understand what your saying, however every athiest is different in their views of being prayed for. I know of several athiests who don't have a problem with being prayed for, whilst they don't believe in a god of any sort, they take it as being cared about.
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    cfs/me symptoms getting worse or cold/flu???

    *Note to self* Do not read this thread while eating.
  21. T

    Aussie Disability is going to be changed again

    I have read about some of the overseas specialists saying that suicide rates with this disease are already alarmingly high. Your suggestion to set up a national register is a great idea, it would also help in mounting a class action lawsuit against the government, which I think people with other...
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    Starting up an international prayer day for ME...

    Meg - International Awareness Day has recently expanded to become International Awareness Week. I wouldn't want prayer day held on May the 12th unless it just happened to fall on a Sunday. The prayer part would be part of awareness week, but not really about raising awareness if that makes...
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    Wesselys Words Revisited

    Prof Hooper is the best :Retro biggrin: Simon Wessely would NOT pass a psych assesment..he clearly has something really wrong going on in that mind of his, apart from being a pathological liar!.
  24. T

    tips for struggling with exercise

    Good work. Fight those demons mellster.
  25. T

    How do you amuse yourself during the day?

    Yeah he watches that sometimes as well. I'd love to get some of those "special" knives.
  26. T

    tips for struggling with exercise

    LOL that is a good idea. I was very active exercise wise pre ME as well. I swear I have an evil twin that keeps tempting me back to it, I have had to have numerous talkings to my self in the last month about why I shouldn't do it again lol.
  27. T

    tips for struggling with exercise

    I love power walking but when I get to the stage of being able to do it I find that after doing it for about 3 months, twice a week, my health goes on a downhill slide until i'm house/bedbound. Which is what happened in 2009. I am feeling the calling to power walk again but this time I am going...
  28. T

    Laura Hillenbrand articles on ME/CFS

    She is such an amazingly expressive writer. Seabiscuit the movie starred Tobey Maguire (Spiderman fame). Laura really hit the bigtime with it. Kind of on a par with Black Beauty.. http://en.wikipedia.org/wiki/Seabiscuit_film
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    How do you amuse yourself during the day?

    Thanks for the links :Retro smile:
  30. T

    Aussie Disability is going to be changed again

    I saw the new table and it is a HUGE worry because you have to have medical proof that you can't do those things, it doesn't go on just what you say. People with ME unless they can see an ME specialist (sell an organ on the blackmarket to get the $$$$) aren't going to be able to do it.. I can...