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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. crowquill

    Doing buddhist practices with low energy

    A frustrating thing is that pretty much all photos of people meditating are of someone in a lotus posture, Burmese, seiza etc. which seems to suggest that anything else is not correct. Meditation is not a matter of how we sit, but being comfortable enough. We have a man in our sangha with...
  2. crowquill

    Doing buddhist practices with low energy

    Hi all I am a long time Buddhist practitioner in the Tibetan traditions and Soto Zen. Over the years I have had to adapt my practices and most of the time now I 'sit' laying down. I also lead ceremony and practice online sitting up rather than standing - meditation, chanting, Tonglen and Ryaku...
  3. crowquill

    High-dose manganese: could it be an effective treatment for ME/CFS? (Ron Davis Research)

    I guess if Ron Davis is finding low levels of Mn in ME patients it is not so much spontaneously developed but a potential part of the disease process. It seems to me that a short-term trial of manganese should be relatively harmless for the majority of people. On the back of Ron's finding I...
  4. crowquill

    List of nutrients - for reference

    Really helpful. Thank you!
  5. crowquill

    Nicotinamide Riboside/NAD+

    @Saint George Thank you for sharing your experience. That does sound like a typical reaction to NR. I have been taking Niagen 250mg for a couple of weeks now and not noticed anything but glad to have given it a try.
  6. crowquill

    Nicotinamide Riboside/NAD+

    Thank you @Mary and for the advice on tagging. I have similar experience of supplements working at the start and then not again. I hope you have found other things that help for a longer period. Andy
  7. crowquill

    Nicotinamide Riboside/NAD+

    Hi all I have been reading the threads about Nicotinamide Riboside and NAD+ and am still unsure about which to try. If I understand correctly, the Nicotinamide Riboside still requires several enzymatic conversions in the body to become NAD and some of us may ne unable to do that. However...
  8. crowquill

    Progressive leg weakening

    Thank you, Jason. That is a really interesting observation and one I shall look into!
  9. crowquill

    Progressive leg weakening

    I did, thank you.
  10. crowquill

    Progressive leg weakening

    >How often have you done the B12 shots? I started off with every other day (1mg hydroxycobalamin subq) and this was great but quickly became ineffective. At the moment my best strategy seems to be once a week for a month with two months break. Even then there is a case of diminishing...
  11. crowquill

    Progressive leg weakening

    Hi Shoshana Thank you for your understanding. I am sorry you have this too. I have actually asked this, or similar questions, on a number of forums in the past and this is the first sign of recognition I have had. I haven't tried either BCAAs or collagen peptides so thank for those...
  12. crowquill

    Progressive leg weakening

    Hi all During most of my 23 years of ME I have experienced the same kind of PEM and recovery through resting that seems to be typical for most of us. However, four years ago I overdid my walking due to a month of dealing with kids' school stuff and ended up pretty much confined to the couch...
  13. crowquill

    What is your personal theory or understanding of ME/CFS?

    Hi Wishful. Are you able to test peroxynitrite levels? Is the effect of peroxynitrite and kynurenine well studied? This abstract sounded interesting with regards to Indoleamine 2,3-dioxygenase (IDO), kynurenine and autoimmune conditions...
  14. crowquill

    What is the course of your ME/CFS?

    In response to the original question, mine is remitting-relapsing but gradually improving until I fall below a certain level. Then it becomes progressive unless/until I can find treatments to take me back over the critical level. Have been ill for 22 years and progressive for the last 3 :-S...
  15. crowquill

    What is the course of your ME/CFS?

    "So in about to buy the gupta thing anyone try it on here (this thread) xx" Yes. Helped stop the mind going over and over the same stuff but not with physical symptoms. At the price of the dvds it is worth trying.
  16. crowquill

    Dr Myhill protocol

    Eric Well clearly not for everyone but some people find them helpful.
  17. crowquill

    Dr Myhill protocol

    Hi PeeWee I am glad you have found some help for Elle. Do you know which supplements have helped her or is it part of an overall package? Dr M uses anti-virals a great deal but you have to be her patient to receive those and, as you rightly say, she is not accepting anyone new just now. Andy
  18. crowquill

    Dr Myhill protocol

    Many people have found benefit from her protocol but it is by no means universal. I have found her webpages and books really helpful. The Facebook group Support for Followers of Dr Myhill's Protocol has some of the most knowledgeable and generous ME folk I have met. Andy
  19. crowquill

    Methylation problem - difficulty sustaining MTHF benefits

    I have been reading about refeeding syndrome and it doesn't seem to fit. Methylation did get started then went away but no new symptoms appeared, just the ones that were there before starting methylation. None of the folate or potassium deficiency symptoms. My ND is coming today so will...
  20. crowquill

    Methylation problem - difficulty sustaining MTHF benefits

    @Mary Thank you. Will read that with interest.
  21. crowquill

    Methylation problem - difficulty sustaining MTHF benefits

    I think one of the problems is that we are trying to do a mix of the Dr Myhill mitochondria protocol and methylation. This could well be leading to the problems you have all observed in high levels of some supplements. Dr M's mito support: magnesium 300mgs by mouth (but ideally magnesium by...
  22. crowquill

    Methylation problem - difficulty sustaining MTHF benefits

    Thanks, Freddd. Yes, it is there, 500mcg of Calcium folinate and 500mcg MTHF.
  23. crowquill

    Methylation problem - difficulty sustaining MTHF benefits

    Thank you, Freddd. Will search for refeeding syndrome. Helps to have a term for this! Will take your suggestions very much to heart and discuss with my ND. Really helpful. I am starting to understand this is an exact science not a throw everything in and hope situation. What is folinate...
  24. crowquill

    Methylation problem - difficulty sustaining MTHF benefits

    Really helpful replies. Thank you! B12 - I get both adenosyl and methyl cobalamin in the Essential Nutrients but maybe not enough. Also have a methylcobalamin sublingual spray - Better You B12 Boost. Penny - really interesting. Thank you! Especially interesting since you are A1298C...
  25. crowquill

    Methylation problem - difficulty sustaining MTHF benefits

    Thank you. That is definitely worth considering. Will talk to my practitioner. Really appreciate the comment. Andy
  26. crowquill

    Methylation problem - difficulty sustaining MTHF benefits

    Hello all I have the A1298C methylation mutation and initially responded well to taking MTHF, with improving energy and muscle strength. However, this effect only lasted for six weeks and staying on MTHF made no difference. My trajectory of illness over the last year has been downwards and...
  27. crowquill

    Dr Myhill receives BMA commendation for her book

    It would be nice if this was the beginning of a change in attitude of the medical establishment towards Sarah's work but I won't be holding my breath. Does anyone know how the books were chosen? Were they decided by committee or voted on by patients? Andy ps. for those outside of the UK...
  28. crowquill

    ICD 10 CM - ME and CFS to be split

    This may make things easier as once we know definitively what each means according to international classification, patients can insist that medical practitioners use the correct terminology for their illness. Of course, those who are not aware of the difference will still get caught up in the...
  29. crowquill

    Feedback sought on genes & supplements

    This thread might be helpful on the COMT++ issue: http://forums.phoenixrising.me/index.php?threads/comt.20337/ Otherwise, I am slowly learning about all this material too. It is quite overwhelming at first!
  30. crowquill

    The Abundant Energy Summit

    I am not convinced that the kind of job you do is necessarily correlated to personality type. I did happen to be a perfectionist academic scientist but knew many other scientists who were pretty laid back and less worried about detail (some have lab technicians to take care of that). Likewise...