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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. Tyto alba

    Esther Crawley - 18th May 2017 - A day with the MUPP(ets) and more

    I thought that this was some sort of joke at first. Flabbergasted!
  2. Tyto alba

    Edinburgh News: Gerry Farrell: Why are you ignoring ME, Ms Robison?

    The email given at the very end of the article is emma@meaction.ne - I'm guessing this is probably an error and should be emma@meaction.net? If so can anyone alert them to this?
  3. Tyto alba

    Dr Nath's intra-mural study at NIH is currently recruiting

    A short video about how the Seahorse tech works:
  4. Tyto alba

    The Nottingham Tool Kit: how the UK is selling ME patients down the river with £200 million for MUS

    Maybe. I inferred that it was 'negative' in terms of ESR being within normal range.
  5. Tyto alba

    The Nottingham Tool Kit: how the UK is selling ME patients down the river with £200 million for MUS

    A negative ESR probably refers to Erythrocyte Sedimentation Rate; a blood test to help detect inflammation.
  6. Tyto alba

    MEA purple book: 2017 edition now published

    As well as the previously suggested electronic version, would/could you consider turning this very useful publiation into a phone app?
  7. Tyto alba

    "Why I put more trust in homeopathy than conventional medicine" (on CBT and GET)

    From an Amazon description of such a clock: How Stuff Works
  8. Tyto alba

    "Why I put more trust in homeopathy than conventional medicine" (on CBT and GET)

    Water will not power the clock. Water and a small amount of weak acid will provide an electrolyte solution for a galvanic cell to power the clock.
  9. Tyto alba

    PACE trial commentary in JHP from Dr Charles Shepherd, ME Association

    It would seem he's been 'travelling' for quite some time now... From ME Action Feb 2016:
  10. Tyto alba

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

    It can be read here: http://journals.sagepub.com/doi/full/10.1177/1359105317700886
  11. Tyto alba

    The history of Action for M.E. (AfME) - a question

    https://web-beta.archive.org/web/20130917032932/http://www.actionforme.org.uk/Resources/Action%20for%20ME/Documents/get-informed/history-of-action-for-me.pdf
  12. Tyto alba

    Denmark: PACE discussed in Videnskab.dk

    FTFY: It can have serious consequences for patients if due to misinformation they are provided with inappropriate care and treatment.
  13. Tyto alba

    PACE Trial and PACE Trial Protocol

    The pdf creation date (from the document Metadata) is 17 January 2017.
  14. Tyto alba

    Brave Sir Prof Wessely discusses death threats 29th March 2017

    Very poor that this sort of thing can be used to invoke the guilt by association fallacy for all M.E. sufferers.
  15. Tyto alba

    Struggling with work at home

    Is there any way that you could find alternatives to walking quite far so regularly? e.g. Internet shopping delivery for groceries etc.
  16. Tyto alba

    How do I know if I am capable of working ?

    Yes tired but wired. I know it's probably not much help because of the stresses of everyday life, and having experienced it regularly myself I can fully empathise, but if you can maybe try and find some way to slowly improve your sleep cycle you might feel a little better. I can barely function...
  17. Tyto alba

    How do I know if I am capable of working ?

    That's my experience too. It's really quite awful; for me it's a fatigued fuzzy feeling but at the same time it feels like you've drunk several cups of caffeinated coffee (even though I haven't taken caffeine in any form for many years). What is particularly frustrating is when it 'sets in'...
  18. Tyto alba

    Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

    Bear in mind that the Navieax study found some differences in biochemical pathway disturbances between men and women.
  19. Tyto alba

    ME/CFS Metabolomic research in Oxford, Newcastle and the ME Biobank

    When I read your quoted section from the article my thoughts were much the same, as well as thinking that this actually sounds very promising indeed.
  20. Tyto alba

    How do I know if I am capable of working ?

    Have you noticed any link between your insomnia and what you've been doing that day/previous day? i.e. Activity type and intensity?
  21. Tyto alba

    An Update on ME/CFS Research with Ronald W. Davis, PhD

    I'd imagine the high frequency harmonics would prevent a clear clean impedance reading(s) if the samples are reacting to a number of different frequencies at one time.
  22. Tyto alba

    Book out now 'Science, Politics, .......and ME' by Ian Gibson and Elaine Sherriffs

    If you look to the right of the 'Product Details' section on the Amazon webpage you'll see link that you can click: 'Tell the publisher! I'd like to read this book on Kindle' - this may help encourage them to produce an electronic version. Edit to add: I wonder where the spider is.... back...
  23. Tyto alba

    New Scientist mentions PACE trial "open data" controversy in editorial (9 Feb 2017)

    How/when did PACE trial participants give consent for data to be shared with non-PACE trial researchers?
  24. Tyto alba

    Do more people recover from chronic fatigue syndrome with CBT or GET than with other treatments?

    Indeed. I wonder how they managed to accurately capture functional ability in PACE using this scoring method.
  25. Tyto alba

    Do more people recover from chronic fatigue syndrome with CBT or GET than with other treatments?

    When an ME sufferer is answering these questions is it from perspective of simply being able to perform the activity in isolation, or are they answering by including the impact of PEM. e.g. Can you walk a block. If answering yes the relevant points are allocated. However there is the payback...
  26. Tyto alba

    New Scientist: Metabolic switch may bring on chronic fatigue syndrome

    Perhaps the absence of quotation marks around the final sentence provides a clue to whether that was a direct quote, or simply the authors interpretation?
  27. Tyto alba

    BBC Radio 4: The Life Scientific with Simon Wessely, 14th Feb 2017

    It's pure propoganda.
  28. Tyto alba

    BBC Radio 4: The Life Scientific with Simon Wessely, 14th Feb 2017

    It's all over the rcpsych twitter feed.
  29. Tyto alba

    New Scientist: Metabolic switch may bring on chronic fatigue syndrome

    http://www.curiousread.com/2009/03/how-people-can-think-themselves-sick.html
  30. Tyto alba

    Bias in the ER: Doctors suffer from the same cognitive distortions as the rest of us

    Although probably not practical in an E.R. situation, A.I. based expert systems can be a useful tool in the diagnosis of rarer diseases, and can also be used to help avoid prescribing issues.