• 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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Search results

  1. C

    A moving video of the work David Tuller is doing in Australia

    Very moving, God bless Dave Tuller & huge well done to film makers & patients
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    34 year-old ME sufferer found dead

    :cry: indeed :mad: murder by hubris
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    The parents of Merryn, who died of ME in 2017, speak out

    Henrik Vogt will have to give account for tweets like this in the yrs to come when we have indisputable proof that he is grotesquely wrong. his ignominious actions will, i pray come back to bite him in the *$!*@ Poor girl such a tragedy :( Glad the papers have reported it well.
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    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    God help us all
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    Daily Mail 20th March: CFS, thyroid hormones, PACE and the Lightning Process

    Thank you, so it's watch n wait then :rolleyes:
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    Daily Mail 20th March: CFS, thyroid hormones, PACE and the Lightning Process

    Interesting Alex, is this about 'cortisol resistance' like insulin resistance? I have always wonder why i have remarkable improvement in ALL my symptoms when i am very anxious/stressed (i assume it's the effect of adrenaline/cortisol). Probab;y revealing my ignorance there but hey ho :) The...
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    UK CFS/ME Research Collaborative (CMRC) updates scientific strategy

    really? after all these yrs of CMRC pontificating? talk about being slow to catch on! :bang-head: I mean if they do then it's to be welcomed, but it concerns me that they mean... lets find a bit more 'bio' to underpin/prove the psychosocial? It all sounds encouraging which is great, but I'm...
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    Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

    I don't think you'd get very far with this, as temperature (unless very high) can fluctuate a great deal & can sometimes fluctuate as a result of stress/trauma/PTSD etc i believe, so they will just twist it to apparently prove their hypothesis. I would also warn against doing anything that...
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    I need headrest for regular wheelchair

    I would be most interested if anyone has any ideas as this is also an issue for me
  10. C

    How can houses of worship accommodate your needs?

    Absolutely. The one i use is a folding metal one with a thick detachable cushion/mattress. - So it supports the head & neck & you can have the legs up or down. It has to be completely supportive & i mean this in the sense that it needs to allow the body to completely slump & not require any...
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    How can houses of worship accommodate your needs?

    I do just that. I am only well enough to attend maybe once every 8wks. And i take my garden lounger with me. My friend takes it in & sets it up for me while i wait in the car, & a couple minutes before the service starts they come & get me out of the car. I too ill to drive or anything &...
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    Farewell – A Last Post from Anne Örtegren who has just lost her struggle with ME

    I never had the privilege of knowing you Anne but our world is poorer without you in it. Rest in peace now free of suffering & pain, you will be sadly missed & your memory will live on among us all. I can barely tolerate the idea of another year as i am & i am nowhere near as bad as she & so...
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    In Memory of Anne Örtegren

    I never had the privilege of knowing you Anne but our world is poorer without you in it. Rest in peace now free of suffering & pain, you will be sadly missed & your memory will live on among us all. I can barely tolerate the idea of another year as i am & i am nowhere near as bad as she & so...
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    Trying to rest more as a treatment

    The notion that muscle weakness in ME is merely deconditioning is pure nonsense. There is plenty of scientific evidence of something more than deconditioning going on, regardless of what your Dr's might say. Just because they haven't seen the research doesn't mean it doesn't exist. That is a...
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    Annie Hopper's Dynamic Neural Retraining System

    oh:confused: Mary i so sorry i dont know how that happened, i reviewed my post beforehand too :confused: sorry about that. I dont know why it came out like that, it had a quote from you at the top of the post & when i went to edit it to put the error right it was still there.... clearly...
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    Annie Hopper's Dynamic Neural Retraining System

    They are always saying things like this about PWME, but i simply dont have any kind of 'fear response' or distressing/catastrophising thoughts about my symptoms. I mean i dont like them, but my emotional response to symptoms is to be a bit miserable/bummed out, even when they are bad enough that...
  17. C

    Please help me find medical explanation for noise sensitivity which will convince my parents

    :bang-head: what these people dont understand is that our 'problem' with noise isnt that we dont like it, or that it is intrusive, but that it makes us ill. Sound sensitivity is one of my most problematic symptoms simply because it's the one people least understand. Saying things like 'try not...
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    plan for no cure and hope you're wrong

    Oh i agree completely with what you say here lior. I'm sorry i wasnt clear when i said 'who would want to accept it', it's ambiguous.... what i meant was more like 'who would want to have to accept it....' I mean I feel acceptance is a healthy response, & having had that experience unexpectedly...
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    plan for no cure and hope you're wrong

    Oh absolutely Cinders66! Dont let me give the impression that accepting that i may well not recover makes me less motivated to advocate, protest etc, it most certainly doesnt. That would be resignation. No way. The very severe are living in a hell i can only imagine in fear, & i will continue to...
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    plan for no cure and hope you're wrong

    You make a very good point, I'm 50 with other health issues, family history of early death due to heart disease (& they were all very fit & healthy previously - plenty of exercise etc!), & no money to try anything non NHS funded for myself, so the outlook, the reality, for me for me is a little...
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    plan for no cure and hope you're wrong

    :D well lior you just said what i was trying to say in a quarter of the time/text LOL :oops::rolleyes: being succinct was never my strong suit! i'm going to get that book it sounds good :)
  22. C

    plan for no cure and hope you're wrong

    I relate to what you're saying @Bander. This is just my account of how i got to a similar 'place'.... its way long so i wont be at all surprised or offended if no one bothers to read it :) My ME started (pretty mild initially) in 2000, i tried to ignore & 'positive think' my way out of it, &...
  23. C

    Rt Hon. Jeremy Corbin MP, leader of the Labour Party, to give opening speech at IiME 2018

    Good on ya JC :) but i'm afraid generally in life 'to be confirmed' seems to mean "yes ok I'll do it (as long as nothing more important/interesting/personally beneficial comes up, which it probably will, but i'll say yes at this stage because I dont want you to think i dont care about you)"...
  24. C

    yawning more then 1000 times a day!!!

    You dont take sertraline do you? it made me yawn hundreds of times a day, was horrible. sorry to having to deal with this hope you find an answer
  25. C

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    :eek::cry::mad:
  26. C

    Huffington Post by Dr Simon Duffy 'Will The UK Establishment Finally Stop Denying The Reality Of ME?

    its great, great comment by Nasim Jaffrey too - may be others so done-in to read further
  27. C

    PIP and ESA: what IS considered good medical information? (UK)

    This topic is so anxiety provoking for me so i will bow out of this thread now. wishing you all the best of luck
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    PIP and ESA: what IS considered good medical information? (UK)

    Well the inability to understand information presented to you would be a factor I think. But it depends how bad it is...& it's helpful to understand the terminology that they use to judge things. Well i dont have the wherewithall to read it all through & the whole thing makes me so anxious I'd...
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    PIP and ESA: what IS considered good medical information? (UK)

    Personally i wouldnt send that letter because it says innaccurate info about your state of health. You need a letter from your GP that says 'this person has CFS, it affects them in xyz ways', better no letter than one that says the wrong thing. Only my opinion but they will pick up on anything...
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    PIP and ESA: what IS considered good medical information? (UK)

    The medical evidence has to speak directly to the descriptors (criteria) that points are awarded for. So, for example a consultant's letter saying 'this person has severe ME & cannot work' will have no effect whatsoever, because it's a tickbox system, there are boxes that must be ticked & if the...