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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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  1. boolybooly

    One day remains on Dr Keith Geraghty's fundraiser.

    Good news, the appeal target has been reached. Well done and thanks to everyone.:)
  2. boolybooly

    One day remains on Dr Keith Geraghty's fundraiser.

    FYI there is a fundraiser for Dr Keith Geraghty reaching its conclusion shortly (end of April) to support his academic work which has been important in refuting GET in the PACE trial. This is the just giving fundraising page link and it does not say so but the fundraising will be ending...
  3. boolybooly

    Dr David Tuller: Time to Fundraise $60 000 so David can keep Championing the ME Cause.- Ends October 31, 2020

    I'm in. Hope we can keep him funded at this time especially, to keep longcovid research on track and stop the blaggers from twisting it all out of shape, they are already starting.
  4. boolybooly

    Stomach causes skipped beats!!

    Yes thanks, good advice, I definitely do have potassium on my radar, with some gluconate in the fridge and LoSalt in my diet, not to mention banana chips, which I can sometimes tolerate if I dont go overboard ! I read that potassium is supposed to be important for Coronavirus treatment and...
  5. boolybooly

    Stomach causes skipped beats!!

    Interesting, must agree I find separate doses more effective as remedies for given symptoms but I also have to be careful not to overdo one or the other because of the way they are mutually competitive. TBH I follow a responsive approach where I adjust depending on symptoms. So if I am getting...
  6. boolybooly

    Article from Dan Peterson and Maureen Hanson

    That link isnt working for me but I found this one at the OMF. https://www.omf.ngo/wp-content/uploads/2020/02/132185.2-20200207181911-covered-253bed37ca4c1ab43d105aefdf7b55361.pdf
  7. boolybooly

    Nanoneedle update: finding what's in the blood

    This is great news. It will be very interesting to see what this kind of assay can tell us about the signalling mechanism involved in the nanoneedle observations and I hope and feel sure the ME community will back you all the way on this one because we want to know too :) I know I do! Best of luck.
  8. boolybooly

    Dr Myhill mitochondrial test not repeatable

    To declare my interests I am a patient of Dr Myhill and I have had the mito tests in question and used them in evidence for disability assessment at one time but no longer do and my last successful appeal for PIP 2016 did not involve them but did involve Dr Myhill's diagnosis. Further reading...
  9. boolybooly

    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

    Dr Myhill has previously responded. FYI:) https://drmyhill.co.uk/wiki/Response_to_the_paper_'Assessing_cellular_energy_dysfunction_in_CFS/ME_using_a_commercially_available_laboratory_test'_by_Cara_Tomas_et_al
  10. boolybooly

    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

    Which may be problematic if one is struggling with autoimmune reactions or food intolerance cross reactions, as I suspect may be true in my own case, evident in migrating symmetrical joint pain over many years and inflammation and mouth ulcers from alkaloid foods. In such a situation a tolerable...
  11. boolybooly

    For those who treated SIBO, did antibiotics change how you tolerated carbs/foods?

    P.S. I forgot to mention that to eat pecans I have to roast them at a low temperature (120°C in an electric fan oven) for two hours to denature whatever it is that otherwise would make them inedible for me. The low temperature is to avoid acrylamide etc formation. Also I think ACVwm, besides...
  12. boolybooly

    For those who treated SIBO, did antibiotics change how you tolerated carbs/foods?

    Very sorry to hear of your difficulties outdamnspot. I have had problems myself and recognise some of what you are saying though its not safe to assume its exactly the same and what works for me will work for you, it may or may not but the best I can do is tell you about things that have helped...
  13. boolybooly

    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

    I am a patient of Dr Myhill and have taken her advice in trying to manage my ME CFIDS. I cant take high doses of Magnesium ascorbate because it gives me the squits. But I take a few grams of Sodium ascorbate daily in my drinks and its fine. I also take zinc and multivitamins with minerals and...
  14. boolybooly

    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

    Dr Karl Morten has commented in this MEA blog. https://www.meassociation.org.uk/2019/08/establishing-protocols-to-assess-mitochondrial-function-in-me-cfs-by-dr-karl-morten-21-august-2019/
  15. boolybooly

    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

    Responses from Dr Myhill and Dr John McLaren Howard. (Not entirely sure if this has been posted, am a bit foggy and airheady at the moment, still, if a thing is worth saying...)
  16. boolybooly

    Dr Myhill mitochondrial test not repeatable

    I don't have any inside information (I am a patient of Dr Myhill and have had anomalous mitchondria profile test results). If it does not say so explicitly then I don't think its safe to assume that these are the same patients. None of the existing criteria are definitive so one cannot be...
  17. boolybooly

    inner ear inflammation, made worse by honey

    Update on this, after sticking to a diet reducing intake of medium chain triglycerides by avoiding coconut, palm oil and dairy, I am free of oedema this year, as last year when I started on this diet management strategy, unlike the previous two years. I still seem to react adversely to grass...
  18. boolybooly

    McGregor's Hypothesis of ME/CFS

    Dr McGregors theory is that something is breaking glycolysis and my own perspective on that is it is probably the body itself as it may be due to an immune response which shuts down normal energy production to fight pathogens which use our metabolic energy to grow. Like running a temperature...
  19. boolybooly

    McGregor's Hypothesis of ME/CFS

    I think phantom pain is not a credible explanation for what I have experienced but given the historical sophistry of psychologists trying to hoodwink healthcare decision makers into funding more psychology and thereby their own careers, I can see there is a risk some people might hypothesise...
  20. boolybooly

    McGregor's Hypothesis of ME/CFS

    This fatiguability due to social interaction is a familiar problem, when I first became ill I noticed a kind of unstoppable mental surge which lead to my mind running on and on. I saw a few practiced healers etc and while the first I went to see could sense what was happening for me she could...
  21. boolybooly

    McGregor's Hypothesis of ME/CFS

    This quote suggests the good doctor does recognise he is dealing with downstream affects. If disturbed glycolysis is the common factor in CFS subtypes, it may still be true that there are more than one causes for disruption of glycolysis as well as different responses to it. Its good he has...
  22. boolybooly

    Kava kava

    I tried Kava and still have a tincture in my herb cabinet. I read online about the liver thing and then twigged that might explain why whenever I took it my stools turned out yellow. Same with cashews which have a toxin in them. I decided this was not a good thing and so I quit using it. I...
  23. boolybooly

    Dr David Tuller: My Latest Letter to Bristol

    Dont forget he needs funding to continue his work for another year. https://crowdfund.berkeley.edu/project/14941
  24. boolybooly

    Paul Cheney Seminar--covers lots of research and clinical experience

    He is right about there being a deeper cause of downregulation but I dont think it is oxidation in my case, since I have CFIDS and I think it is immunological. Some of his patients with CFS may have oxidation problems, I wouldnt know but I think that is a different situation and subtype to...
  25. boolybooly

    Improved article on Liddle's savagery against ME by Frances in the Guardian

    Yes, the recent press articles producing anti ME patient flak have the appearance of a campaign of desperate string pulling and calling in of favours by someone trying to counter the interpretation of Sharpe's resignation as an admission of guilt over the widely recognised improper procedures in...
  26. boolybooly

    Impairments in cognition in CFS unrelated to depression but associate with autonomic dysfunction.

    Thanks @Murph my take on this is the conclusions have been nobbled by someone with a psychology careerist bias. The evidence points to a subset of Fukuda CFS having a different illness from depressive illness but the conclusions refuse to acknowledge this when it stands out like a sore thumb...
  27. boolybooly

    House of Commons Full Debate on ME next Thursday 24th January 2019

    woohoo! I wrote to my MP and asked him to vote for the motion, including the URL to a parliamentary briefing document. https://www.meaction.net/wp-content/uploads/2019/01/MEAction_UK_Parliament_Briefing_Full_Jan19.pdf
  28. boolybooly

    Forward ME via #MEAction "Tell NICE ~ CBT/GET" survey 2007+

    A request from Forward ME via #MEAction, FYI. https://mailchi.mp/meaction/cbt-get-survey?e=6218e40c8a
  29. boolybooly

    Special Message for you from Ron Davis (video)

    Well good luck as I said above, I hope you can find some way to help Witney and many others whose tragedy inspires and deserves our most sincere compassion. To declare my interest, I have a version of ME CFIDS which undoubtedly produces recurring virus, which I can prove because I have had my...
  30. boolybooly

    Special Message for you from Ron Davis (video)

    Thanks for communicating Ron and good luck in 2019.