• 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. allyann

    Dr. Nancy Klimas’s advice on Covid 19 (video)

    That may be true for the northern hemisphere but in the southern we are heading into winter and our normal flu season. We also had cases in January which is the middle of our summer.
  2. allyann

    Prayer to Saint Jude

    Thank you Starlight. This prayer of Jabez is really helping me now.
  3. allyann

    Prayer to Saint Jude

    Staint Jude, Pray for me to help me with this pain in my side that is causing me such suffering. Pray the my doctor can find and locate and help my pain and suffering. Amen
  4. allyann

    Permanent worsening after surgery

    @Plum I had the same thing with five operations in one year three years ago. I had a significant reduction in functionality and then a gradual decline ever since. I have to have another operation in two weeks and I am scared that it will reduce my already limited functionality (10-20%) but I...
  5. allyann

    Prayer Tree July 2016

    Sounds like a plan GG :)
  6. allyann

    Prayer Tree July 2016

    Is anyone interested in reviving the Prayer Tree?
  7. allyann

    Help for disability appeal (Australia) - ruled not fully treated

    You can find an advocacy group that services your area here: https://disabilityadvocacyfinder.dss.gov.au/disability/ndap/ Also get in touch with Senator Scott Ludnam's or Senator Rachel Siewert's office. They are pushing the Federal government on these misguided decisions. Let us know how you...
  8. allyann

    My son has just been diagnosed with Autism

    There are people that have got it Tania, you need your specialist to sign off that it is permanently disable and unlikely to ever recover. You also need to provide supporting documentation on the degree it impacts on your ability to live a normal life. If you follow the ME/CFS Australia Facebook...
  9. allyann

    My son has just been diagnosed with Autism

    Thanks @Ellie_Finesse. He was diagnosed over three years ago now and it has been a steep learning curve but we are all a lot more comfortable with things now. With speech and occupational therapy he is doing really well now and will start school next year. We are in Australia and will shortly...
  10. allyann

    My son has just been diagnosed with Autism

    Interesting @SueJohnPat, I too see a lot of overlap in symptoms, particularly the sensory side of things. I would guess though that I would have been diagnosed with Autism as a child if it was more understood as it is today.
  11. allyann

    I don't follow a specific path but..

    yes. I like the ones that get you to focus on the areas of pain and then on areas that are not painful etc.
  12. allyann

    I don't follow a specific path but..

    I do a lot of the same. I particularly like Jon Kabbit-Zinn Mindfulness Meditation for Pain Relief. I have also listened to the audio book The Compassionate Mind by Paul Gilbert which I got a lot out of.
  13. allyann

    I don't follow a specific path but..

    nicely put @Lissyleigh. I am also spiritual, but no longer follow a particular religion. I do find that if I can quieten my mind, I too can surrender to the universe and listen to its teachings. I wonder if pre-illness I could ever have achieved the stillness that I do now. Do you meditate? I...
  14. allyann

    Queensland Government: Gold Coast researchers make chronic fatigue breakthrough

    This article has a simplified explanation http://www.sciencealert.com/one-of-the-biggest-myths-about-chronic-fatigue-syndrome-just-got-destroyed One of the Biggest Myths About Chronic Fatigue Syndrome Just Got Debunked Chronic fatigue IS a real disease. Chronic fatigue syndrome (CFS) or...
  15. allyann

    Queensland Government: Gold Coast researchers make chronic fatigue breakthrough

    I don't understand the negativity in this post. We spend our time begging for biomedical research and then pooing all over the the scientists and thier research when they publish results. This is a world respected research facility with some significant backing, who also happen to have the press...
  16. allyann

    Queensland Government: Gold Coast researchers make chronic fatigue breakthrough

    Another similar article on SBS Australia http://www.sbs.com.au/news/article/2017/02/21/queensland-scientists-make-chronic-fatigue-breakthrough
  17. allyann

    Nguyen et al/NCNED: Calcium mobilisation in NK cells from CFS/ME patients is associated with...

    I am glad I am not the only one @Gingergrrl that has trouble understanding these papers ;)
  18. allyann

    Candidiasis in the gastrointestinal

    Has anyone been diagnosed with candidiasis in the stomach? If so did you experience an improvement after treatment? I have just been to an allergist who told me that it is very common with irritable bowel syndrome and CFS. I am starting anti-fungals today. He said that it may also help once...
  19. allyann

    Dysregulation of Protein Kinase Gene Expression in NK Cells from CFS/ME pts

    More promising research from NCNED. Full paper: PDF
  20. allyann

    Prayer Tree July 2016

    I am happy to do the prayer tree with you and keep it going. Take care of yourself. Peace be with you
  21. allyann

    Prayer Tree July 2016

    Hey @Gingergrrl thought it might be a good idea to update the Prayer Tree again. Please add your name if you would like to be a branch or root (or both) or also if I included you from the prior tree and you would like to be removed. You can post it here in the thread or send me a PM. The most...
  22. allyann

    Killer Cell Immunoglobulin-like Receptor Genotype and Haplotype Investigation of Natural Killer Cell

    Here is the full PDF http://www.la-press.com/redirect_file.php?fileId=7592&filename=5702-GRSB-Killer-Cell-Immunoglobulin-like-Receptor-Genotype-and-Haplotype-Invest.pdf&fileType=pdf
  23. allyann

    Novel identification and characterisation of Transient receptor potential melastatin 3 ion channels

    This was the message that they released on their Facebook page - Today, NCNED published an important paper reporting a significant reduction in TRPM3 cell surface expression in NK and B lymphocytes, as well as decreased intracellular calcium within these cell types. As this receptor is...
  24. allyann

    Australian scientists make breakthrough in Chronic Fatigue Syndrome testing

    There are larger studies currently underway. Unfortunately I live too far away from the nearest collection centre to participate.
  25. allyann

    Australian scientists make breakthrough in Chronic Fatigue Syndrome testing

    Here is the press release from Griffith University. https://app.secure.griffith.edu.au/news/2016/03/01/screening-test-for-chronic-fatigue-syndrome-on-its-way/?src=hp I for one would rather put my faith and support in researchers who are investigating bio-markers and pathomechanisms rather than...
  26. allyann

    Australian scientists make breakthrough in Chronic Fatigue Syndrome testing

    This is their latest paper http://www.la-press.com/genotype-frequencies-of-transient-receptor-potential-melastatin-m3-ion-article-a5387-abstract?article_id=5387 this is far too technical for me to understand but I presume that this is the research they are referring to in this interview.