• Welcome to Phoenix Rising!

    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. D

    Mass hysteria may explain 'sonic attacks' in Cuba, say top neurologists

    Why don’t any of the doctors suggest that they might have all caught a virus? I just don’t get that.
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    TOP 3 UNEXPECTED THINGS ABOUT PERIMENOPAUSE AND MENOPAUSE

    @hellytheelephant I got the agnus castus - I’ve been taking it for about a week and my breasts feel entirely different. All the lumpiness is gone! Thanks so much for the suggestion!
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    "Unrest" updates

    I haven’t tried yet...
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    Mrs Sowester's Magic Beans

    Presumably @Mrs Sowester you will be producing some with memory of gold and/or silver. They would need to cost much more and could be made in a lovely colour....?
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    "Unrest" updates

    Woo hoo! For those who supported the original Kickstarter campaign, we get our digital download link for the film on Monday!!! Yay!
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    ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'

    @Jonathan Edwards are you sure that the diddly squat doesn't actually help relieve constipation? :p
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    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    Yes - I can usually 'rise to the occasion' at least for a while. But then I pay for it later.....
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    @BS3boy please don't rush to leave.... People here have strong opinions. We disagree often - and usually can agree to disagree. I may not agree with everything you have done or do, but it's very interesting hearing your reasons!
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    Newly Diagnosed and Devastated

    My younger brother was ill with glandular fever for well over a year. His health took a fair while to really return to normal but he is completely fine now and has been for years. He was probably more susceptible to getting ill for several years afterwards, and he got tired easily. Rest, rest...
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    POLL: Do you still read books and newspapers now that you have ME/CFS, or do you read much less?

    I can't read anything where the print is too small... and nothing which requires lots of concentration. So lightweight books only and I forget the plot very quickly. I can now get a book out of the library and g4t several chapters in before I realize I've read it before..... I used to read...
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    :lol::lol::lol:
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    TOP 3 UNEXPECTED THINGS ABOUT PERIMENOPAUSE AND MENOPAUSE

    Helly- I went into my local pharmacy and they are ordering in some agnus castus for me! So I will let you know how that goes... thanks for the suggestion. Re the libido issue - mine's gone..... almost none. Too tired, and sex makes me feel ill. Used to love it once...! Now it seems to have a...
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    Some concerns about homeopathy

    Is it just me or is it actually true that beliefs almost never change as a result of debate about facts? I think it's rare for our beliefs to be based solely on facts - and we tend to hold onto beliefs a lot more strongly than facts.... we defend them vigorously and the more facts that are...
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    TOP 3 UNEXPECTED THINGS ABOUT PERIMENOPAUSE AND MENOPAUSE

    Ha ha Tigerlilea, I know what you mean! I had two large ones, and lots of smaller ones. The biggest was 9cm by 5cm.... it certainly felt better when the two big ones were drained. I think they have re-filled to an extent though.:(
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    TOP 3 UNEXPECTED THINGS ABOUT PERIMENOPAUSE AND MENOPAUSE

    Thanks to you all! I've never heard of agnus castus before - but that definitely looks like something worth trying. I had really sore breasts about a week ago - I think the cysts were playing up but now I've got my period, they don't hurt. Just period pains and feeling exhausted instead! At...
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    The role of high expectations of self and social desirability in emotional processing in IBS

    *#@&$€¥! What this study really shows... People with IBS have emotions too - no really, it's true, they do...... IBS is unpleasant, and might make you feel a bit more emotional, which you might cope with in a variety of ways....no sh*t Sherlock :bang-head: Most researchers are quite stuck in...
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    Blog: A disease identity crisis

    No - I don't think you'll be a fraud if you still come here... I'm sure that there are many of us who actually have other diagnoses, but we haven't had enough investigation/medical interest and belief to actually find that out. If you do get a firm diagnosis, and you're happy to share what that...
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    Hot springs - have you thought about it?

    There's a thermal pool 10 minutes from me. I go sometimes if I'm really stiff and sore. The water is warm, not hot so I can tolerate it ok. If it's too hot, I feel awful. The warm water does help a bit with sore muscles.
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    Unrest Kickstarter has gone live - share, donate (even the smallest amount!)

    So... I thought long and hard about donating. I supported the initial campaign to make the film, and part of me has been disappointed in a) the wait for a reward, and b) the mixed feedback. I also have issues with being asked for more money, and then more money.... I would like at some point for...
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    I'm going to a MUPS focus group

    @Valentijn - you just made me actually snort with laughter! I don't know why you can't just say what you mean.....:rofl:
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    CMRC 2017 conference update: Look who’s flying-in next month!

    I watched a few minutes and couldn't bear to watch any more.
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    For those who attend the UK's Fatigue Clinics: what your therapist is told/believes

    I'm a therapist, and I know how to engage in critical thinking. If you try a technique/therapy with a patient and it doesn't work, then you need to think 'why not?' The answer is always that it's the wrong therapy, not that the patient hasn't tried hard enough..... If the patient actually hasn't...
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    "The biopsychosocial approach: a note of caution" George Davey Smith (2005/2006)

    I can only imagine he's been crawlied..... It's a strange sort of brain-washing, that probably involves flattery and a fair amount of eyelash-batting. Like CBT, with the result that a certain person takes on saintly qualities and has to be defended at all costs. Rational, scientific thought has...
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    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    This study is a doozy.. 120 potential participants, 12 started the study and 8, yes that's 8, completed it.... Anyone got alarm bells ringing yet....
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    Young Leader on the Road to Recovery and Helping Others

    'Healed' = 6 hours of work a week. So on a good week I'm healed too! Nice to know.. Seriously, it's great that she's out of bed and feeling a bit better, but there's no evidence at all that she's on the road to recovery...
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    TOP 3 UNEXPECTED THINGS ABOUT PERIMENOPAUSE AND MENOPAUSE

    So today I get a letter from the hospital turning down the referral my GP made to the breast clinic. A 9cm cyst is not serious enough... the letter does say 'we appreciate that this is not the outcome you will have been hoping for'...... And I've got cramps and my period again - two weeks after...
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    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    Done..
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    TOP 3 UNEXPECTED THINGS ABOUT PERIMENOPAUSE AND MENOPAUSE

    It's so hard to know whether the menopause makes the ME worse, or whether the ME makes the menopause worse - or if in fact, it works both ways..... I'm sure I read somewhere that women with ME tend to have earlier menopause. It would make sense as all our hormones seem to be awry in terms of...
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    "Unrest" updates

    I totally agree re the sensory overload issue! I'm hoping to get my other half to listen as my issues with noise and light are one of the things he finds hardest to understand....
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    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    What an amazing opportunity. Immense thanks to all involved for live-streaming! According to the stats, there were 200 attendees and 1500 registered for online. To be able to watch and listen for free was huge..... I stood up when Ron finished, and then shed a tear when the actual audience gave...