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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. sarah darwins

    2nd January: BBC article on Prince's staff member stricken by ME referes to neuroimmune disease

    That's great, although my first thought was that we were talking about maybe one of Prince Harry's staff members and I was thinking "game changer!"
  2. sarah darwins

    UNREST screening and reception at the Speaker's House, House of Commons

    Indeed, and given the reputation of lunchtime in the House of Commons, let's hope they're mostly sober when they watch it. Perhaps Jen could take the opportunity to tell them that drinking alcohol is one of the many things most of us can't do. That should get through to them.
  3. sarah darwins

    Can positivity cure any disease? (blogpost)

    Just happened across a Guardian comment piece — Why Pessimists Have a Reason to be Cheerful https://www.theguardian.com/lifeandstyle/2017/oct/20/shared-values-equal-happiness-oliver-burkeman-change-life which is roughly on point. I liked the most recommended comment by 'mitsuko'
  4. sarah darwins

    Can positivity cure any disease? (blogpost)

    Illuminating post. Thanks, Alex.
  5. sarah darwins

    Can positivity cure any disease? (blogpost)

    LOL. Not me, but I can think of a few people to nominate. The claim I heard recently about laughter and immunity was from Mirriam Stoppard in the second series of The Real Marigold Hotel, out in India. What interested me was that in the same programme she was banging on about the importance of...
  6. sarah darwins

    Can positivity cure any disease? (blogpost)

    On a TV programme a while ago, I heard a doctor mention as a throwaway comment that "they've found that laughter improves your immune system." I've heard this a lot — I'm sure we all have. Does anyone know if it has a credible scientific foundation?
  7. sarah darwins

    UK, Weds 18 Oct: Jen Brea & Omar on ITV news and in The Times with Unrest

    Wow. Kermode and Mayo's film review is probably the most followed in the UK now. Big audience and a lot of influence. That's great.
  8. sarah darwins

    Time to do a first statement of account of my progress after 5 month on PR

    My myopia decreased and presbyopia decreased :) I suddenly found that a very old pair of glasses worked perfectly while my newer ones no longer did. Like I got younger :) edit: sorry, I think I meant myopia increased, but I get very confused with eye stuff
  9. sarah darwins

    Time to do a first statement of account of my progress after 5 month on PR

    That's interesting. My vision changed quite a lot when I was on B12 shots, too. Makes you think, doesn't it.
  10. sarah darwins

    Guy self-injects a DIY experimental gene therapy for HIV

    Wow. I'm rooting for the guy. I'm no better placed that you, undiagnosed, to have a clue if it could work, but I hope it does. It might seem cray to some people, but after nearly two decades of illness I wouldn't need much persuading to do something similar.
  11. sarah darwins

    Documentary: Undercover in German Lyme Clinics

    Pragmatic and sensible, patti. I did the Arminlab test and it was borderline. I did get a 'post lyme' diagnosis, and consequent treatment for gut dysbiosis was very helpful to me, ridding me of terrible migraines (typically 6 per month, each lasting a couple of days — hellish). I've suspended...
  12. sarah darwins

    Documentary: Undercover in German Lyme Clinics

    I would like to know more about the methodology used. I don’t know anything about BCA Augsburg, but I thought the Amin Labs test was intended to be used as a diagnostic tool by physicians, not as a yes/no type test. So who recommended treatment to these people? Or did the lab actually recommend...
  13. sarah darwins

    Prof Sir Regius Simon Wessely on Judicial Appointments Commission

    I can't think of anything meaningful to say except Aaargh :bang-head:
  14. sarah darwins

    Rituximab Trial - SMC Expert Opinion?

    Go on, I can't resist. Maybe popular science writer and media tart Suzanne ‘It’s all in Your Head’ O’Sullivan? “It’s evidently a powerful placebo effect, enhanced by Rituximab having an X in the name. X is a strong letter which may well have therapeutic potential. Xanax, Ofloxacin or Clorox...
  15. sarah darwins

    Mrs Sowester's Magic Beans

    Sarah's Magic Beans - only $5,000 / bag Guaranteed up to 99% recovery from ME/CFS!!* SAY GOODBYE TO EMBARRASSING TROUSER STAINS!!!! * (depending on the definition of 'recovery')
  16. sarah darwins

    Mrs Sowester's Magic Beans

    hm. You have a point. She's got to be cutting costs somewhere.
  17. sarah darwins

    Mrs Sowester's Magic Beans

    I was going to say bring it on. Let the Bean War begin. But now I've seen Mrs S' franchising system, and just what incredible value she's offering, I'm not sure I can compete. I was going to charge much more.
  18. sarah darwins

    Mrs Sowester's Magic Beans

    Yeah, your beans are rubbish while mine are brilliant! ;) Tell you what, give me 10% of your first year profits and we'll call it quits
  19. sarah darwins

    Mrs Sowester's Magic Beans

    Ahem. I wish to draw the attention of members to my advertisement informative post of December 2016: link: here The above post by Mrs Sowester is a transparent attempt to copy and cash in on my seconds years of hard work. Throwing in a cheap graphic in no way mitigates this clear...
  20. sarah darwins

    Tonight, BBC2 8pm. Documentary re drug companies

    Agreed. Excellent stuff - UK people with thyroid problems will find it particularly interesting at one point. When he was talking about how the drug companies adopted an explicit policy of combining marketing and research, he could have been talking about our BPS friends.
  21. sarah darwins

    A brilliant new cure guys ;) Thrive programme

    What people don't realise is the quack-money connection
  22. sarah darwins

    Guardian article "I had CFS. the Lightning Process at least offers hope."

    yep. The Guardian is very pro Science with a capital S. It just has trouble understanding that not everything that claims to be Science actually is. I find I'm not so much upset at any of this as shaking my head in a sort of awed astonishment — the kind you get when you watch Louis Theroux's...
  23. sarah darwins

    Smile Trial publication by Ester Crawley at the Science Media centre

    hi @Gday - there's another thread on this (but the title isn't that clear) Embargo broken: Bristol...
  24. sarah darwins

    What's your opinion of Dr Myhill?

    Just a side note to part of the above discussion, regarding PCBs. Last night I saw a rather sad piece on The One Show that featured a story about a dead killer whale, whose premature death and failure to produce a calve during the years she had been studied have been tentatively attributed to...
  25. sarah darwins

    Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

    Nicely spun, huh? "... increasing acceptance", implying delusion across the pond. They just can't help themselves.
  26. sarah darwins

    Esther Crawley - Research scandal posted on the student room

    I guess it's still university vacation, so all the students are getting drunk in Patmos instead of Bristol (I would be)
  27. sarah darwins

    Attentional and interpretive bias towards illness-related information in chronic fatigue syndrome

    @Dolphin - I don't know how you manage to wade through so much bullshit without completely losing your mind, but thank you for doing it so the rest of us don't have to. You're a star.