• 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. Y

    Comment by 'Ysabelle-S' in 'Journal from my Moderation Cell, Day 1'

    Never mind all that, what's the food like?
  2. Y

    Farewell, until we meet again

    I can be found at Facebook - the S is for Stewart. In case anyone is looking for me or ever wants to chat.
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    Flu vaccine and ME/CFS - MEA info leaflet for 2017 - 2018 vaccine

    My previous GP refused to give me the flu vaccine many years ago because she said it could make ME sufferers worse. Consequently, I've never had it and would be concerned about any negative impact on my health if I did get it done.
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    Pervasive Refusal Syndrome

    Little is known about PRS because it's totally made up B.S..
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    I'm losing count of the number of arrogant professionals who think they can troll ME sufferers with their articles and books and tweets. Sick to death of it.
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Emma Joy not taking this from Henry. Rightfully demanding an apology:
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    He's now saying they do care about ME, which is why they gave this story priority over the other science stories that day. :bang-head::bang-head::bang-head: How the hell do you write up a study on an illness you know nothing about, and then expect to go unchallenged? Don't think he realised how...
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    You know, I think Henry's reference to factions and conspiracy theories... the way he tweeted those things.... is a likely indication of what he's been told about ME 'activists'.
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    He is totally out of his depth and behaving like a child. He also shows no curiosity about the subject, and doesn't understand either the importance of diagnostic criteria used, or what the CCC is. He's babbling about factions and conspiracy theories, but it seems to be a deflection tactic to...
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    I don't see any difference between the abusive hate speech I might be subjected to (from gays and straights) as a bisexual person, and the abusive hate speech I'm seeing from so-called researchers and media on ME. I think the law in England and Wales has just been changed to include recognition...
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    @Sean If there really are 250K of us, that's potentially 250K stories of what's happened to us at the hands of the medical profession. And 250K stories of what it's like to be on the end of anti-ME ableist abuse by the media. We might not control the media, but we sure as hell have social media...
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    More responses to the quack LP trial:
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Telegraph journalist: I have to ask, who warned him? SMC? The dodgy researchers? And have the other journalists also been 'warned' about 'these people' - ie, ME patients. Adding screencap of the full tweet:
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Do the Guardian not have a US online edition?
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    They have a curious disinterest in that test. The reasons are obvious.
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Frankly, until we have reliable biomarkers, no one can make any claims about recovery from ME due to this or that therapy or drug, because they can't even prove they had the illness in the first place. I've had two plates of homemade broccoli and cheese soup, and I'm hankering after another...
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    I wouldn't worry - our memories are so bad, we probably forget what was on earlier pages anyway. ;) I've seen that one on Twitter, but don't recall posting it here.
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    @Art Vandelay - Yes, I agree.
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    From Keith Geraghty:
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    The attitude of Parker and Crawley reminds me of Trump. They don't care about facts at all. Their followers are just as bad.
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    People claiming to be cured by LP posting on Telegraph, presumably at a certain person's instigation since he told people to hit the comment sections and deal with the flat earthers. None of them can prove they had ME since there is no definitive diagnostic test and misdiagnosis is not uncommon...
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Keith Geraghty asking for thoughts on this, for any of you on Twitter:
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Yeah, I keep wondering if they can do any worse, and they never fail to prove they can. I think they are desperate. The true scale of what's been happening to ME sufferers in the UK (and elsewhere) is not something the usual suspects want to talk about. Hence they endlessly portray themselves as...
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Imagine having a trial like that on your CV. I hope it follows them around like a bad smell for the rest of their careers. Ought to be laughed out of their jobs for this one. What next? How much lower are they going to go?
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    @lilpink I saw that. Hopefully we'll see more condemnation from actual biomedical researchers who understand the nature of this illness rather better than Crawley and her laughable team of 'researchers'.
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Just realised you already posted this, Cheshire, lol.
  27. Y

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    'The Lightning Process: Does this controversial (and expensive) chronic fatigue syndrome treatment really help patients? Despite new research, ME experts remain sceptical and say it could be damaging' The rest is here...
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    I refuse to have anything to do with any ME charity that is involved with these quacks. You cannot sup with the devil and think you have any mediating influence with the power imbalance that exists.
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Keith Geraghty is writing a blog on this, so if you have any thoughts you can contact him:
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    UK journalist Sonia Poulton is not impressed with LP for ME (first tweet about the SMC conference): These from today: