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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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Search results

  1. tandrsc

    On-going supplement poll

    Thanks hip. I don't think it gets much traffic these days as I haven't seen anyone vote since January. I hope it was useful.
  2. tandrsc

    On-going supplement poll

    My poll will be coming off the web soon so that I can save money on hosting. So that the data isn't lost, I'm attaching it here. I've attached two files: supplementsraw_data.csv - This is a csv version of the data that you can open in any spreadsheet package. When prompted, the charachter set...
  3. tandrsc

    On-going supplement poll

    Sorry everyone, but I don't want to maintain this poll anymore. I have removed the option to request new supplements. I will leave the poll up as it isn't any effort for me to leave it where it is. However, if it all stops working for some reason then I'll have to take it down. If that happens...
  4. tandrsc

    On-going supplement poll

    Glad to be of help :)
  5. tandrsc

    On-going supplement poll

    Glad to be of help :)
  6. tandrsc

    Experience with UVB Lamp for raising vitamin D

    Yes, the lamp comes with safety goggles. They are little things designed for function rather than style :-) It also comes with a minutes/seconds timer, which was very handy as I didn't already have one.
  7. tandrsc

    Experience with UVB Lamp for raising vitamin D

    According to their instructions it is big enough to increase vitamin D, but I have to admit that I haven't had another test recently. I really like it. The instructions say to use it on skin that doesn't usually see much sun, but I don't leave the house much and my part of the world doesn't get...
  8. tandrsc

    Spreading the word - other ME/CFS forums

    A couple more: Health Rising: http://www.healthrising.org/forums/ BrainFog: http://www.brainfog.org/phpBB3/
  9. tandrsc

    Has anyone been helped by Vagus nerve stimulation?

    See the following for some more experiences and a much cheaper way of doing it using a TENS machine. http://www.healthrising.org/forums/threads/preparing-tens-leads-to-use-in-vagus-nerve-stimulation-of-ear.2653/ These particular posts may be of interest...
  10. tandrsc

    VIDEO: "An Update on ME/CFS", a talk by Dr. Alison Bested

    This happened to me too, until I worked out that I needed to allow Flash. Depending on your browser, there should be a button somewhere prompting you to allow it.
  11. tandrsc

    Experience with UVB Lamp for raising vitamin D

    No I don't. I came to the conclusion that there that would only be a point in getting them tested if I planned to do something different depending on the results. I would continue to use the lamp whatever the levels were. I can't overdose using the lamp as my body will only be making what it...
  12. tandrsc

    Experience with UVB Lamp for raising vitamin D

    Well the lamp hasn't made a huge difference but it's definitely better than supplements. In hindsight I think the supplements were making me worse. I'm very happy with it and will continue to use it.
  13. tandrsc

    Experience with UVB Lamp for raising vitamin D

    In case anyone is wondering, there are 2 units of measurement for vitamin D, ng/mL and nmol/L The UK tests tend to use nmol/L and the US ng/mL To convert nmol/L to ng/mL divide by 2.5. e.g. 75 nmol/L would give 75/2.5 = 30 ng/m If you are having trouble getting your doctor to agree to a...
  14. tandrsc

    ****** !!!!!!!! ****************!!!!!!!!!!!!!!!! Junior version of PACE funded PI Dr Crawley

    It seems to me that a trial cannot take place without participants. Parents may feel forced into a particular treatment, but they can't be forced into taking part in a trial. If parents just say no the trial will never happen.
  15. tandrsc

    Other methods of taking Omega 3s ...

    Try a vegan omega 3 supplement. I believe they are derived from algae so should have very little fat. http://nutritionfacts.org/video/algae-based-dha-vs-flax-2/ Flaxseed is good too, but if you can't manage the fat then that's probably no good for you.
  16. tandrsc

    Pulsing tincture?

    @jop - In answer to your question I'm not really sure If I don't notice a difference within a month then I can't tell if any change is due to the supplement or whether it's just a good or bad patch in the nature of the illness. I have also heard that pulsing might work better, but this hasn't...
  17. tandrsc

    On-going supplement poll

    Thanks for the suggestion of adding CPAP machine, but I'd like to limit the poll to nutrient-based supplements. It's already very long :-) I had sleep tests done some years ago due to my hypersomnia (12-14 hours sleep a day), but they couldn't shed any light and sent me on my way to just live...
  18. tandrsc

    On-going supplement poll

    Thanks :) I hadn't had any new votes for a while, so I was beginning to think people had got bored of it.
  19. tandrsc

    Suggestions for specialists in U.K?

    The Countess of Marr asked about the question of choice in parliament, the answer was yes, you can. Here's the link: http://www.meassociation.org.uk/2014/06/parliamentary-question-are-mecfs-patients-being-denied-their-own-choice-of-consultant-24-june-2014/ Julia Newton is certainly doing...
  20. tandrsc

    Trying Metformin for my hypoglycemia issues???

    I sympathize - I've been struggling with my sugar levels for decades, despite eating all the right things (like you). I have a couple of suggestions that might help. 1. Check that none of your drugs/supplements have a side effect of lowering blood sugar. When my episodes became worse, I...
  21. tandrsc

    what has worked for you

    It's difficult to say as all activity tires me, so it all adds up. Fortunately, when I've been well enough to leave the house I've been well enough to walk for up to 30 mins. I think stubbornness has played its part. The ability to walk has been so important to me that I have made my legs walk...
  22. tandrsc

    what has worked for you

    I have gone from only managing to get dressed once a week to working 2.5 days a week (easy office stuff) with the following combination in chronological order: This list of herbals: http://www.cortjohnson.org/blog/2013/08/11/an-herbal-approach-to-chronic-fatigue-syndrome-that-worked/ This form...
  23. tandrsc

    Treatment for Cold Sores

    This is my recipe 2 tsp water (10ml) 5 drops peppermint essential oil 5 drops lemon balm (aka melissa) essential oil 10 drops lavender essential oil Put everything in a small bottle (one the size essential oils tends to come in is perfect) and give it a good shake before each application...
  24. tandrsc

    2012 Dr. Julia Newton research/treatment

    Her work gets a more recent mention on Health Rising http://www.cortjohnson.org/blog/2014/08/06/orthostatic-intolerance-pain-mitochondria-chronic-fatigue-syndrome-dr-newton-talks/ You can see her talking head videos on this youtube channel (videos 43 to 49)...
  25. tandrsc

    Have I just stumbled on the best possible therapy for CFS/ME/POTS sufferers?

    Here's the Health Rising article on the subject: http://www.cortjohnson.org/blog/2014/08/29/system-reset-reduce-fight-flight-response/ The comments are worth a read and one of them has a link to the device that was used (about $150)
  26. tandrsc

    Feeling much better avoiding certain foods

    It might be calories. My symptoms are significantly worse (foggy head, fatigue, stomach pains etc) if I don't keep my calories down. Eating only veg would definitely reduce your calories.
  27. tandrsc

    Where can I buy food grade chemicals to make up my electrolyte? (US)

    You could try plain old tomato juice, this has a lovely combination of electrolytes. http://nutritiondata.self.com/facts/vegetables-and-vegetable-products/2688/2 It works a treat for me. I drink mine diluted, 1/3 juice to 2/3 water.
  28. tandrsc

    Electrolyte / Rehydration Recipes / Ingredients?

    The thing that works for me is tomato juice, yes just plain old tomato juice. I buy the cheap one from the supermarket that has salt added, but salt is the only thing that has been added. I was getting migraine like headaches in the afternoons, and after reading Cort's blog on low blood volume...
  29. tandrsc

    On-going supplement poll

    Thank you - that's very kind.
  30. tandrsc

    On-going supplement poll

    Good luck with the Skullcap, I only know that lateriflora is the one that works for me, so I'm sticking with it :) I can't tell you the amount in mg as I don't take the herb dry. I make a tea with 2 level teaspoons of dried herb to 250ml water, let it steep until it's cool, strain and put in...