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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. meadowlark

    Voices:Bristol Uni. both denies and supports Prof Crawley in her career enhancing “heroic vict

    Yes ... if a comparatively simple cease-and-desist costs in the thousands, imagine the cost of a defamation lawsuit! But I doubt that Crawley actually investigated starting one--beyond the basic task of finding out the cost of a reputable American lawyer. Not some high-priced Famous Case type...
  2. meadowlark

    Voices:Bristol Uni. both denies and supports Prof Crawley in her career enhancing “heroic vict

    Last year, I was victimized by a company that had bought the rights to a book of mine. Long story, but they not only breached my contract but infringed my copyright (which is theft). I felt completely helpless til two kind friends funded a lawyer on my behalf--specifically, to write a...
  3. meadowlark

    S Lubet - Trial by Error, Guest Post: Questions About Professor Sharpe’s ‘Special Ethics Seminar’

    I think it's lucid, calm and powerful. It also has the virtue of being right.
  4. meadowlark

    Things are heating up in Canada!

    The Toronto Star did a piece about Unrest in today's edition: https://www.thestar.com/life/2017/04/27/unrest-documents-a-little-understood-disease-hot-docs.html
  5. meadowlark

    Things are heating up in Canada!

    I'm glad to read this. I'm in Ontario, and had to fight the bureaucracy for two and a half years, appealing every denial. I was finally scheduled to go to tribunal to stare the government down when, out of the blue, I got a letter granting disability. The reason? The backlog of unfinished cases...
  6. meadowlark

    Things are heating up in Canada!

    Scott--first of all, bravo a thousand times! I assume this was in Ottawa (?) I would have loved to have gone, as I'm having a good streak, but couldn't have managed it financially. You were great!
  7. meadowlark

    Pittsburgh City Paper article on M.E/CFS. Ron Davis is interviewed

    If it makes you feel better, I was a journalist/editor for thirty years, and I always presume there are misquotes in a piece, or quotes out of context. They always happen, even to the best reporters. Usually they're benign, and sometimes not, but they're always there, if only at the eyelash...
  8. meadowlark

    How do you experience colds?

    How rotten that you've been going through this. Unfortunately, LDN, codeine and opiates do nothing for me, I think nurofen is like ibuprofen up here (Canada), and unfortunately that doesn't help me either. But if you get help from them, that's fantastic. It does help me to know that someone...
  9. meadowlark

    Discouraging News for Canadian ME Patients

    In Canada, Prime Minister Harper (voted out of office in Oct. 2015) forbade government scientists to speak about (or publish) their findings if those findings were inconvenient to the government agenda. Many government scientists were miserable during Harper's tenure and were jubilant when...
  10. meadowlark

    Toronto Star: New research unlocking mysteries behind chronic fatigue syndrome

    It's very clear, Shannah. Many thanks. I spent almost my entire career in publishing, but even on my best days, this internet thing is dang confusing. And of course, ME/CFS doesn't help.
  11. meadowlark

    Toronto Star: New research unlocking mysteries behind chronic fatigue syndrome

    I'd like to comment on the Windsor piece, but I'm very sick today (head swimming) and so I'm going to need some help with a very elementary question. To register, the W. Star tells me to declare my user name and defines the user name in parenthesis as "email." My email address uses my actual...
  12. meadowlark

    Canadian advocacy (may be useful for other countries too) 1MP at a time

    My MP is the Minister of Finance, which rather discourages me when I think of getting any time with him, but you have inspired me, Kati.
  13. meadowlark

    Famous (and sort of famous) ME/CFS sufferers

    It's behind a paywall, unfortunately. My UK friend says she doesn't talk about the illness itself, but about her feelings for Australia and how the solitude M.E. brought her (well, living in the outback also brought solitude, I suppose) helped her to find peace. That's all I know. But I was just...
  14. meadowlark

    Famous (and sort of famous) ME/CFS sufferers

    She's not famous, but she's a notable person--Freida Hughes, daughter of poets Ted Hughes and Sylvia Plath, has M.E. A friend of mine in Britain told me there was a piece about her in The Sunday Times last week. She's been living in the Australian outback.
  15. meadowlark

    CMAJ (Canada) recommends exercise for CFS

    I wrote to her as well, and got the same letter. Galling. If she had bothered to look at the links I sent--and that I know you also used, Old Bones, and Scott as well--she wouldn't try to 'splain effective treatment to patients who know more about it than she does. I'm mulling over writing...
  16. meadowlark

    CMAJ (Canada) recommends exercise for CFS

    Superb, Old Bones!
  17. meadowlark

    CMAJ (Canada) recommends exercise for CFS

    Thanks so much, Old Bones. I sent the writer an e-mail. I'm in Canada, with family in Kingston. Not that I wouldn't have e-mailed anyway, but I hate to think that my relatives may have read this. I have bad brain fog today. Can someone tell me if there's a way to email the CMAJ? (Apologies if...
  18. meadowlark

    Canada: Meeting with Policy Advisor, Ministry of Health

    What an achievement Scott. And thank you.
  19. meadowlark

    Wall Street Journal article on PACE Trial and data-sharing

    p.s. I have no idea why all of my comment is appearing in beige to indicate a quote. The internet gives me brain fog.
  20. meadowlark

    Wall Street Journal article on PACE Trial and data-sharing

    Frustratingly, I can't read it. WSJ asks me to subscribe first. I read a few cultural pieces there in the last while and maybe I've reached my limit.
  21. meadowlark

    Marijuana and CFS research summary

    I'm in Canada, where we have medical marijuana nationally, and after even morpiates failed to help me, I was given a prescription. The aim was to help me endure this migraine I've had every day since 1980 (and which I assume is related to my ME/CFS). It doesn't change the pain, but the buzz it...
  22. meadowlark

    I hate this life

    This has been so, so hard for me. First, I was raised to be stoic. I am also a "good girl" through and through, and feel awful if someone doesn't think well of me. But as I am now just about what they call a "senior," I am becoming more sensible, know that I have every right to ask for help, and...
  23. meadowlark

    I hate this life

    If I am with someone who genuinely wants to know what ME/CFS is like, I simply say that trying to function physically, in any way, on any level, is like trying to strike a flame from a wet matchbook. Or that the blood in my veins has turned to water. (Same image for adrenaline.) Sometimes those...
  24. meadowlark

    Professor Peter White reviews IOM report in Psychological Medicine

    Thanks--I see now that I am not adept enough at twisting myself into a 3-D pretzel. I will have to learn that before I attempt to follow Peter White's mindset again.
  25. meadowlark

    Professor Peter White reviews IOM report in Psychological Medicine

    Thank you! The irony re White's view is so astounding that I thought I must have been misunderstanding both theories.
  26. meadowlark

    Professor Peter White reviews IOM report in Psychological Medicine

    Can someone explain the meaning of "dualistic understanding" in the context of ME/CFS, as well as the meaning of a "monist understanding"? Signed, Clueless in Toronto.
  27. meadowlark

    Information Commissioner's Office orders release of PACE trial data

    "Egg Sample" works for me! All this reminds me of two dialect books I used in drama school, "Let's Talk Strine" (Let's Talk Australian) and "Fraffly Well Spoken" (Frightfully Well Spoken). They were more or less blunt instruments to get you into the general sound of the accent. Then you'd add...