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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. willow

    Methyl B12 side effects?

    Hi Justy, some people have genetics that mean they 'use up' methyl groups more or less quickly than others. If you are someone who uses them slowly then the more you took, the less tolerant you'd become. Symptoms would include being hyper or headaches or agitated. I'm not methyl sensitive but...
  2. willow

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Awh Sphynx, that sounds bad. Re outgassing the FIR blanket, the airing helps a bit. I aired mine and heated it empty to encourage/speed outgassing but if it helped it wasn't nearly enough. Infact my reaction to it deteriorated and after a few tries I stopped being able to sweat in it...
  3. willow

    My Translocator Protein Studies Results

    Cigana, FWIW I wouldn't rule out HM being an issue. My translocator sites weren't even blocked (though tests showed very compromised ATP measurements) but I've had huge dumping of metals in the years since my mito tests.
  4. willow

    Another UK ME doctor up before the GMC

    This is very sad and disturbing news. It's a long time since I consulted with him but his goodness and sincerity shone through. Anyone got contact details for letters of support? (echoing ukxmrv)
  5. willow

    Brainstorming for positive and constructive advocacy ideas

    Yes, I know there's some organisations I don't trust, and wouldn't want them to have extra money to disseminate a study/image of ME I diasgree with. If I'm unfamiliar with the organisation I would read more than 1 source, or read only sources that I fully trust. A significant part of that is...
  6. willow

    Brainstorming for positive and constructive advocacy ideas

    Yip, it's your last comment; it's more about understanding the organisation's objectives than how to vote. If caught on a very good day I'll do it. (I've previously supported causes I later realise I hadn't sufficientlyunderstood, and regretted doing so.)
  7. willow

    Brainstorming for positive and constructive advocacy ideas

    I know I can control the privacy issue. This is not my problem with FB. Something about the layout serious disturbs with my sense of balance. Even a minute or so on the darn thing and I am so disorientated, nauseous, dizzy for many hours, my whole day gone. I have a healthy friend who feels...
  8. willow

    Why does 5AZA matter?

    Thanks for that info, Jace. It's perplexing and saddening that the same people who were generous with dubiously motivated Phil Parker/Lightening Process types and their unsubstantiated 'therapies', treat Judy Mikovits with harsh disadain, sneers and smears. It's not remotely even handed.
  9. willow

    90% cured from bed bound with Histrelief / Histame / Daosin

    I decided to take about a 1/3 of a cap which i did several times. I had slight relief from some of my symptoms but like Sara, headaches too. Those were worse than the inflammation relief. I did a small amount of research and if I'm remembering right possible explanations included that products...
  10. willow

    seeing Dr Myhill tomorrow

    My experience too. Though I also felt she was kind, highly motivated to improve my health, just too fixed on her particualr theories and not a good listener. That's ok if her theories work for you. In my case she was keen to give me EPD shots for food sensitivities and I was pretty certain...
  11. willow

    Searching for fibro people who also have/had cancer

    Hi, I'm looking for people with FM who had or have cancer, in particular breast cancer, and who are prepared to chat about it with an FM friend of mine who has recently also got a breast cancer dx. In particular she is interested in hearing how people got through the op and about after...
  12. willow

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Not me Sushi, but it happened to a friend. She is British was living in Britain getting the usual hard time/indifference from medics. Then she moved to France and hadn't tried accessing the French healthcare system, but had an eye test where they said to her that her eye problems were...
  13. willow

    EBV infection and inflammation reported to enhance XMRV replication

    Eek who is this person who thinks they can get away with such charges for so little. I know you're unlikely to say, but I'd like to avoid them :cheeky grin: Seriously, even in the UK that is an unfathomably large fee. If you don't want to self inject you know you can buy liquid B12 here...
  14. willow

    I would love some help for my wife - about to have mercury fillings removed !

    Hi Ross, Well there's a co-incidence I'll be having 2 tiny amalgams removed also on 8th March. It's taken me 2 years to get to the stage where my holistic dentist thinks I'm strong enough. We're waiting and seeing how it goes before deciding whether to embark on the removal of the...
  15. willow

    Transformational Breathing

    Hi Justy, You're right it's like an intentional hyperventilating. I haven't tried bre3athing for rebirthing but I'm told that it focuses on the upper part of the breath and whereas this is about the full diaphragmatic breath. The purpose of it is to open up the full breathing system...
  16. willow

    Transformational Breathing

    Hi Danny, I read your post ages ago, bought the book sometime in 2009 and only recently felt this was within my capabilites. Yesterday I had my first lesson and I think it's going to suit me. The practitioner really listened and tailored the session to my ablities and limitations. (how...
  17. willow

    EECP Treatment is Very Helpful/My Daughter Helped Alot

    Hi, For people in the UK I used this at a beauty salon. They told me the origianl purpose was to improve circulation for heart patinets but they used it for lymph drainage and to reduce fluid retention in tissues. You can choose the pressure and I think the interval of compression, so...
  18. willow

    Homeopathy

    Hi, My limited understanding is that in Classical Homeopathy a recurrence of symptoms present at the start of the disease is known as an aggravation. This is generally seen as a good sign, but that these should also be accompanied or followed by some improvements. I've read that aggravations...
  19. willow

    Tap Water: Any Bad Reactions?

    Lisa, My Dad has an inflammatory reaction to his tap water supply, even if only drizzled on his hands. He was able to rerpicate this with his GPs water supply. A small part of my degree encompassed the geography of health. An approximate recollection regarding the water supply of the...
  20. willow

    Food allergies, elimination diet, help!!

    I don't know whose diet that is Joshua, but I wouldn't tolerate most of that.
  21. willow

    What's the worldwise incidence of neuro-immune ME?

    Sorry if this is an obvious question but searching only confused me. Anyhow, a healthy person I've been updating on XMRV etc has asked me and I'd like to give good info. Other stats welcome too. Thanks!
  22. willow

    ME/CFS Demo: One woman protest in Wash DC!!!!

    Yes I saw this and thought she worded it really well. Great getting out there in the first place, however she said it.
  23. willow

    What treatments have CURED people?

    Too right! You're young and with more powers of healing than a long termer like me. Like you more of my problems are brain and other neuro rather than physical and remarkably my neuro function is improving. I'll never give up. A friend of a friend at University woke up one morning and...
  24. willow

    The Optimum Health Clinic, London

    Hi Cigana, Just a quick point in case in case to inform those who don't know that I'm in the UK and would definitely not use the newer term CFS to describe my condition but only ME. I fulfill the Canadian Consensus Definition and ME then distinguishes us from people with non-neuro based...
  25. willow

    Depressed 4 year old - ADVICE PLEASE?

    Mmmm... My post didn't read quite like I had things in my head. I hadn't taken it that you were working hard at hiding things but I can see it reads that way. Take no notice of me Athene :Retro rolleyes:
  26. willow

    I contacted Erin Brockovitch

    Sounds Great! Thanks 5150
  27. willow

    Depressed 4 year old - ADVICE PLEASE?

    I recall that as a child that when my parents tried to protect me from difficult truths I could sense the concealment and my imagination was always worse than the truth. Perhaps especially when I was younger and language less developed, senses are more key to understanding the world? There...
  28. willow

    Spanish patient with chronic mercury intoxication goes on hunger strike

    I sent the support letter/emails without problem. Wishing him strength and success in his fight and better health.