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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. Leopardtail

    Unknown PACE-trial advocate tries to block JHP issue dedicated to the trial

    Frankly its not acceptable content, but since it's 'News about the disease, rather than a medical fact', a Newspaper is considered to be a reliable source in Wikipedia. I had a protracted discussion about it to little avail. The Judgement of the Court however is a superious reference and...
  2. Leopardtail

    Unknown PACE-trial advocate tries to block JHP issue dedicated to the trial

    Wasn't sure how to interpret, waiting with baited breath.. LOL
  3. Leopardtail

    Unknown PACE-trial advocate tries to block JHP issue dedicated to the trial

    This is the one from the mail Jonathon. http://www.dailymail.co.uk/health/article-4749208/Angry-scientists-throw-insults-regarding-flawed-study.html#ixzz4oVLZUwAX
  4. Leopardtail

    Unknown PACE-trial advocate tries to block JHP issue dedicated to the trial

    Sorry for the wild goose chase folks. I had confused the older NY Times Article as relating to this and still can't find the Guardian one. I am guessing this was a brain fog issue. I have only been able to find the Times and Daily mail articles.
  5. Leopardtail

    How many people have had their 1,25 Vitamin D tested? Debunking the Marshall Protocol

    Vitamin D is 'hearsay wise' reported to lower Cortisol production and likely affects sleep through that vehicle but only if Cortisol is raised. The one bit of definite science I am aware of is that the Thymus has vitamin D receptors (it transforms lymphocytes into their active forms. Vitamin D...
  6. Leopardtail

    Unknown PACE-trial advocate tries to block JHP issue dedicated to the trial

    I stored a copy of the NYT one on my hard disk somewhere. I can't seem to find either now, but will have a crack at finding them again tomorrow (hopefully with a sharper mind).
  7. Leopardtail

    Denied treatment in the UK need to leave my country again.

    I take on board your argument about resource allocation. Looking at the tone of that discharge sheet, the spelling errors etc. To me it looks like it was written by somebody in a rage. The behaviour of the security guard stregthens that suspicion. I also noted the ownward referral and that a...
  8. Leopardtail

    Denied treatment in the UK need to leave my country again.

    I would suggest he pick up the phone and report it on 111. The video footage may only be kept for a week, depending on the system and hospitals do 'lose evidence' when it's convenient.
  9. Leopardtail

    Unknown PACE-trial advocate tries to block JHP issue dedicated to the trial

    I have now had chance to read all but one of the papers. I was greatly impressed by the quality and civility of the analyses and between them they revealed a host of issues. So far I have found a reference to this in the London Times (so-so written), an article in the Daily Mail, one in the...
  10. Leopardtail

    PACE trial commentaries in the Journal of Health Psychology to be made open access

    Note I said take ownership the position is very simply to demand a public inquiry so that things may be properly looked at out in the open air. That means is being 'our demand' for a public enquiry us, our advocates etc, not just that of a lone wolf.
  11. Leopardtail

    PACE trial commentaries in the Journal of Health Psychology to be made open access

    Somewhat ironic when they can't COPE with reasonable questions.
  12. Leopardtail

    PACE trial commentaries in the Journal of Health Psychology to be made open access

    I suspect that us and our charities getting behind Dr Myhill's campaign and taking ownership of it would be a much better use of our energy.
  13. Leopardtail

    (NLP) "Feasibility study for a community based intervention for individuals with severe CFS/ME" (UK)

    Maybe finally people will start taking notice of these nuts and deal with them, cancer is the 'holy disease' in Britain that can't be shown this disrespect.
  14. Leopardtail

    (NLP) "Feasibility study for a community based intervention for individuals with severe CFS/ME" (UK)

    AHEM - I think you meant to say "proof of defective illness beliefs" ;-)
  15. Leopardtail

    Does Anyone Have Experience Of Using Lugol's Iodine Solution? For Deficiency/Methylation/Other

    Taking too much Iodine (not selenium) can raise the ratio of T4 to T3. I have yet to see any proof as to why. Also Iodine supplementation can be a problem if people suffer hyptothyroidism due to Hashimotos. You will get a lot more information on this at ThyroidUK where they specialiste in...
  16. Leopardtail

    Does Anyone Have Experience Of Using Lugol's Iodine Solution? For Deficiency/Methylation/Other

    Thanks for both papers Richard. I had seen material by an american doctor who advocates taking 50mg of Iodine every second day to combat infection. He too indicated that Iodine was formerly used as an antibotic - it destroys the cell walls of all three classes of infective microbes. I had...
  17. Leopardtail

    Does Anyone Have Experience Of Using Lugol's Iodine Solution? For Deficiency/Methylation/Other

    The peak of production both of T4 and T3 occurs during sleep - in other works after Melatonin peaks. Serotonin in concentrations of 1 and 10 μg/ml greatly stimulated the organification of iodine and the formation of iodothyronines in suspensions of isolated thyroid cells. Iproniazid enhanced...
  18. Leopardtail

    Calcifications in right adrenal (suprarenal) gland and kidneys

    Cushings Disease is caused by the Adrenals themselves over producing Cortisol due to 'growths' on the adrenal glands that produce the hormone continously whether needed or not. Cushings Syndrome is due to the Pituitary overproducing ACTH, that is again thought to be caused by cysts but other...
  19. Leopardtail

    Action for M.E. - Placing Patient Views at the Heart of a New Research Strategy

    They have a long history of psychogenic advisors sadly. Chaudrey's son also had 'CFS' and was treated successfully by Crawley. My guess, never had ME at all but another illness causing fatigue. Sonja keeps saying she understands what we are saying, but actions speak louder than words.
  20. Leopardtail

    Calcifications in right adrenal (suprarenal) gland and kidneys

    Yes, I have. They were high all day long, very high in the morning. An adrenal tumour (cushinigs disease) seems unlikley, more an issue of Cushings Syndrome. The levels also did used to vary more seasonly. I suspect the Cushings Syndrome is secondary to some triggering factor - I am almost...
  21. Leopardtail

    Completely eliminated my severe anxiety symptoms with three supplements!

    Have you any idea of the science behing the mechanisms of their actions Hip? Interesting, I have long term high Cortisol and am producing large amounts of both Taurine and Citrulline. Initally I had anxiety, no longer do (meditation and self hypnosis), perhaps these are my body's adjustment...
  22. Leopardtail

    Completely eliminated my severe anxiety symptoms with three supplements!

    One very obvious explanation would be Cortisol. Where the adrenals are in good shape the body produces Cortisol to manage inflammation, that in turn causes anxiety. I have ongoing sinusitus due to fungal infection that causes crazy levels of Cortisol. When I shift the infection (and the...
  23. Leopardtail

    Action for M.E. - Placing Patient Views at the Heart of a New Research Strategy

    They did more than that. They funded a PHD studentship, meaning three years salary for the researcher.
  24. Leopardtail

    Hazel O'Dowd (PACE author) webinar for GPs sponsored by AfME

    I am begninning to think we need to stage some kind of protest 'interesting enough' to get press attention. "Who flew over the cookoo's nest?" to highlight the ongoing issues with the distrust between both ME patients and researchers and the MRC/CMCC. Given that this model is now trying to get...
  25. Leopardtail

    Hazel O'Dowd (PACE author) webinar for GPs sponsored by AfME

    Who are we? The British Association for CFS/ME (BACME) is the professional body for clinicians and therapists who are involved in the management of patients with CFS/ME. That translates into the vile psychiatrists who have been terrorisising ME patients and destroying the quality of other local...
  26. Leopardtail

    Calcifications in right adrenal (suprarenal) gland and kidneys

    I am not aware of having 'calcification' but definately have a pain that feels like a lesion to the muscle. In my case is severe on my right right thigh, and less so on my rear left, its caused the muscles to shorten and put me in a wheelchair (can't straighten the legs properly to walk). I...