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    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. C

    My son has been sleeping 14 to 16 hrs a day

    I'm so glad to see your son is doing a bit better. With the camping thing, we were avid campers. We had to stop because: a) the car travel was too much (noise-blocking headphones helps with that) b) poor sleep in something that wasn't his own bed. That said, sitting or lying in the sun (before...
  2. C

    My son has been sleeping 14 to 16 hrs a day

    He came very, very close to being bedbound. He spent a couple of years with his waking hours in an armchair at a computer. I'm not sure you could call it sitting, more reclining - or sitting semi-horizontally (or laying down at an angle). His reasoning was that he was terrified of not being able...
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    My son has been sleeping 14 to 16 hrs a day

    When you get to it, really do try including the star anise when making the broth. It really made a difference to the taste. Add salt, ginger and onion (or leek) and you have a good basis for anything. All the best with it. If nothing else, you'll get really good at soup from scratch! Please...
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    My son has been sleeping 14 to 16 hrs a day

    With bone broth, I found that there are a couple of tricks to make it more palatable (especially for a son who wouldn't/couldn't stomach fats at the time). You have probably tried all of this, but we found things were better with: different bones - chicken and lamb are easier to digest than...
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    My son has been sleeping 14 to 16 hrs a day

    I am so sorry you and your son are going through this. We have been there and know what it's like. I am writing this to give you some hope that it could get better, even if it takes a while. My son was 15 when he finally crashed for real, but looking back, the signs of a slowdown had been...
  6. C

    Has time spent malnourished delayed recovery? How long will recovery take from this?

    As hap1808 said, we don't measure success by elapsed time either. It's never a waste of time to be cared for and do the caring. And things can change so much from day to day and week to week. There is only the next day - no day zero. As for calorie needs, in Australia at least, you can see a...
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    Very noticeable improvements in brain fog using Dr Greg Russell-Jones's transdermal B12 oils (which provide a similar dose to B12 injections)

    I live in the same country. If the spiders don't get you, there's the snakes, the dingoes and the famed drop bears ;) We're not worried because we have none of those man-eating things like lions, tigers, wolves or real bears. To be serious, though, I'm more worried about our mate Greg retiring...
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    What are the challenges of using physical books?

    The question: Is it challenging to read printed material? If so, why? Things that might make a difference: The paper stock - glossy (too reflective or slippery) or matt? Colours or color contrast Font size Use of images The balance of text and white space Hard and soft cover books The physical...
    • CCC
    • Thread
    • books https://forums.phoenixrising.me/attachments/books-jpeg.44032/ reading
    • Replies: 11
    • Forum: General ME/CFS Discussion
  9. C

    Calling all foot bath and transdermal nutrient users - I need help

    We got on board the @ahmo bus and used footbaths for quite a while. We are strong supporters of this method. They work really well when your digestion isn't working so well. They are really, good for absorbing magnesium as you bypass those potential digestion issues. Also, an Mg footbath is...
  10. C

    I have had CFS for 6 years and my wife just developed it too

    I am so sorry this has happened to you both. I does sound like your wife caught it off you. @Hip got his off a virus, which infected others as well. So it's not impossible. If you could find a good integrative doctor, it does give you some basis for strongly arguing the case for an infection...
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    Very noticeable improvements in brain fog using Dr Greg Russell-Jones's transdermal B12 oils (which provide a similar dose to B12 injections)

    It doesn't make much sense to us, either. That said, the difference is measurable. We're also now up to 70 mcg (two drops). It does need to be taken on the same day as the b12 oil (adenosyl only). My ideas for why this might work are based on severe deficiency - so any amount will do...
  12. C

    Very noticeable improvements in brain fog using Dr Greg Russell-Jones's transdermal B12 oils (which provide a similar dose to B12 injections)

    We've found it makes a huge difference - even at only 35 mcg a day of this one. 3 times that is too much. There's also a bit around about needing I, Se and Mo for B12 to work, which we'd already done coincidentally. (from the B12 oils guy). Human biochemistry is so complicated. Edit: I had a...
  13. C

    B2 I love you!

    I get this message: The link you followed may have expired, or the Page may only be visible to an audience that you aren't in. It might be a very private group. Thanks anyway.
  14. C

    B2 I love you!

    I tried that, but it didn't come up for me. Is it a closed group?
  15. C

    Very noticeable improvements in brain fog using Dr Greg Russell-Jones's transdermal B12 oils (which provide a similar dose to B12 injections)

    @Hip @Cipher Have you seen Freddd's latest suggestion? It seems to have made a big difference to him.
  16. C

    B2 I love you!

    You wouldn't be able to post a link to that page, would you? I'd be ever so grateful.
  17. C

    Sedated from B-complex?

    Some people can't even process folinic acid - so they have to avoid green veggies. We're very fortunate in that we can process folinic + B2 as a base. It leaves the more-expensive methylfolate for times when we need a quick boost, for example, when we need to go to an appointment. You might...
  18. C

    GABA makes my headache/nausea worse, while Coca Cola helps, WTF?

    Not sure if this helps, but we've had a doctor tell a family member with severe gut issues to sip coca cola just 1 teaspooon at a time to manage nausea. It worked well. No idea why, though.
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    Sedated from B-complex?

    We've found that folinic acid + B2 works for us. We need the B2 to be able to process the folinic. Once a day, a dose of methylfolate is also needed (we find that it's faster acting). Some people can't tolerate even folinic acid - they need methylfolate. Your daughter might be in this category...
  20. C

    Australians take note: TGA consultation to restrict 'sports' supplements

    The proposed legislation shows that anything could be caught up if it has any sort of claim attached. Most vitamins could fall under this: Therapeutic Goods: goods for oral administration that are represented (expressly or by implication) as being for the improvement or maintenance of physical...
  21. C

    Sedated from B-complex?

    But how did they feel when they woke up?
  22. C

    Australians take note: TGA consultation to restrict 'sports' supplements

    TL;DR: Go to the TGA site and comment on the TGA proposal to ban sports supplements. The consultation paper is available here: https://www.tga.gov.au/consultation/consultation-proposed-clarification-certain-sports-supplements-are-therapeutic-goods You can comment on an online form...
  23. C

    Headache treatment: trimetazidine nicely dissipates my 3-day headaches within 12 hours

    I use potassium gluconate because we have it for my son (he is the reason I am here on PR - potassium is one of the goto options for tiredness and irritability). We haven't tried other forms. I have found the coconut water makes quite a big difference. The potassium can work on its own, but...
  24. C

    Headache treatment: trimetazidine nicely dissipates my 3-day headaches within 12 hours

    @Hip I also get three-day headaches of exactly the kind you describe from time to time (not on a schedule, though). The main thing that works for me is potassium gluconate stirred into coconut water. We discovered it by accident when my husband brought some coconuts home. If I'm not able to...
  25. C

    Epidemiology of paediatric chronic fatigue syndrome in Australia.

    A family would be lucky for it to take only 13 months from symptom onset to diagnosis. I don't believe for a minute my son would have been included in this study. We didn't go to a pediatrician. We went to a doctor with expertise in complex illnesses - one that we knew who had already run afoul...
  26. C

    Transdermal B12 oils

    @garyfritz Congratulations. I'm so happy to see you're doing so well.
  27. C

    Very noticeable improvements in brain fog using Dr Greg Russell-Jones's transdermal B12 oils (which provide a similar dose to B12 injections)

    @Hip Welcome to the B12 Oils group! Along with @garyfritz , my son has probably been one of the heavier users of the oil here - up to three slurps a day of various combinations of the methyl and adensyl B12. (although, spray would be a more accurate word as it can splatter a bit) As you have...
  28. C

    OAT - Organic Acid Testing - is it useful?

    That's true, but the question was about a test for B6. A simple blood test is a cheap (free in Australia) and reliable screening test. It is an easy way to identify frank deficiency or surplus. With a bit of googling, you can interpret the numbers yourself so you don't have to accept a lab...
  29. C

    OAT - Organic Acid Testing - is it useful?

    We had just a very simple blood test. It might not tell you everything, but it will tell you if your B6 levels are too low or (in our case) too high. An early GP had prescribed a tonne of supplements. One day I read the labels to see that everything had B6 in it. And yes, blood levels were...
  30. C

    Im outta here. Thank you for everything.

    I'm so sorry I missed this. We are on only 25 mg of Huperzine A every second day. Nothing like 200mg daily. We also introduced the Alpha GPC later, and also only very few days (on days without eggs).