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

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Search results

  1. U

    CURED CFS/ME? PLEASE SHARE YOUR STORY HERE.

    I know my story is not going to go down well but here goes.. My daughter got this (whatever it is) aged 11. We tried lots of things and visited lots of specialists over the years. You can see all my previous posts to get a picture. There was gradual improvement but the fatigue and feeling...
  2. U

    In Memory of Rich Van Konynenburg.

    I'm so sorry to hear of this. He was so helpful to me and I greatly admired his unflagging determination to try and find some answers to this horrible illness. Rest in peace, Rich.
  3. U

    Possible to be hypothyroid but have normal tests?

    How much selenium Athene? I've tried everything bar thyroid meds and nothing works!
  4. U

    Where is Rich?

    Same here!
  5. U

    Feeling Cold...

    May be linked to thyroid/low blood pressure. You may like to try tsp of salt in glass of water once or twice a day every day - this has worked for us. (but not if you have high blood pressure)
  6. U

    EEK- Travel Vaccinations!! HELP

    Aww Cath don't do it! Sorry to be negative. I'm a big travel fanatic and one of my biggest regrets with my daughter having ME, and right now I would say it's a mild form, is that I cannot take her travelling to places that require vaccinations. She would have been half way round the world by...
  7. U

    Hair loss

    Has anyone had any luck with reversing this hair loss using vitamins etc? My teenage daughter is now getting this, could it be linked to low cortisol as alice1 posted? Never heard that one before.
  8. U

    Chronic fatigue syndrome 'affects one in 100 pupils'

    Just heard Dr Crawley talking about it on Radio 5, apparently '94% of kids get better if it's caught early enough'..she's also 'doing research into the effect on families'...oh please. All that money she gets for 'research' and what a complete waste of money. Interesting when one of the kids...
  9. U

    If you have Cold Hands & Cold Feet, what helps?

    Salted water can help you if you have low BP/adrenal issues.
  10. U

    Article: Corinne at Dr. Peterson #5: TARDINESS, SURPRISES, FLEXIBILITY AND ATTITUDE

    Thank you for sharing that Corinne, maybe one day I'll get my starfish over to see Dr P too. All the best with everything.
  11. U

    App with KDM

    Theres a train station near said cabbage fields, that's how we got into Brussels centre
  12. U

    Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

    So then does that mean that if you dont have EBV infection this isnt going to help you?
  13. U

    good sign??

    Do you have to go through a doctor to access these tests Athene?
  14. U

    App with KDM

    I quite liked it plenty of planes taking off overhead! We had a nice hotel but i know what you mean about the cabbage fields!
  15. U

    3 things you tried that made you WORSE!

    Well there's a lot that has helped to be fair, but I would say that antibiotics have had some alarming reactions, thyroid supplements ditto, and then GET was a terrible mistake but I'm sure alot of Brits fall for that NHS chestnut at the beginning.
  16. U

    Mending adrenal glands - rising cortisol and feeling DRASTICALLY improved

    Hi Athene oh I didnt know that about cortisol - it's hopeless isnt it for every thing you try there always seems to be a drawback!! My daughter who is the one with ME (i am just the full-time unqualified chemist, doctor and researcher in the relationship) is taking 2 isocorts a day, we have...
  17. U

    App with KDM

    hi Klimt , traffic is pretty bad in the mornings and if you need to be there early you would probably do better staying at a hotel near the clinic to be honest.
  18. U

    Mending adrenal glands - rising cortisol and feeling DRASTICALLY improved

    Well I thought that so long as you kept under 10mg cortisol then suppression wouldn't take place?
  19. U

    Daily Mail - ME after cervical cancer jab

    Yep. I have 3 daughters inc one with ME, none of them have had the injections, it's just too much of a risk.
  20. U

    Mending adrenal glands - rising cortisol and feeling DRASTICALLY improved

    Its the B vits that do that isnt it?
  21. U

    Letter from Annette Whittemore, "Our Responsibility", IP removed from WPI, 11/11/11

    Well I have to say, having read all this, that I tend to believe Dr M. After all she wants the stuff back so she can continue her research, and they say it's lost. How convenient. I dont think that Annette Whittmore comes out of this very well.
  22. U

    Mending adrenal glands - rising cortisol and feeling DRASTICALLY improved

    I've picked up this information from Susan Costen Owens, she has a yahoo group. She says that oxalates can be generated when someone is taking high doses of vitamin C or consuming high levels of fructose.
  23. U

    Mending adrenal glands - rising cortisol and feeling DRASTICALLY improved

    Hi Athene, she is just following the adrenal supplement route as per his website recommendations. I will have to try the nutrient route, although she is taking all of the nutrients you list (minus the fibre) but not in the high quantities . Are you worried about oxalates with taking such a...
  24. U

    Mending adrenal glands - rising cortisol and feeling DRASTICALLY improved

    Athene along with the vitamins you list do you also take the actual James Wilson adrenal products (Adrenal Rebuilder, Stress Formula etc) ? My daughter has been taking these and there has been no improvement whatsoever.
  25. U

    Adrenal Issues and treatment problems

    People are mentioning pregnenolone cream on this thread; my daughter has been advised by Sarah M to take hydrocortisone 1% cream daily but it is having no effect and I'm wondering if we should try pregnenolone?
  26. U

    transdermal minerals

    We use this and its a bit of a faff to apply because it drips everywhere. Not sure how much of a difference it makes but I can see the rationale behind transdermal application. You have to keep it in dark place btw to stop it breaking down.
  27. U

    Norway's Directorate of Health Apologises for Treatment of ME Patients

    Sorry I haven't had time yet to read all about this Norwegian trial, but can you tell me if the 10 people who are recovered have to continue taking this drug, or now they are better they don't have to?
  28. U

    Sleep, what finally helped

    I guess this is not OK for the lactose/casein intolerant?
  29. U

    App with KDM

    I dont know about 5000, in our case we were paying about half that. The consults, whether over the phone or in person can be abit hard going as he is a man of few words. HTH