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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. K

    Vogue: We are now glamorous in 'CFS: The Invisible illness affecting millions of women.

    Yes, probably because she wasted valuable energy putting those four bangles on her left upper arm after her 12 hour working day! She's forgetting the basic rule of pacing, bra before bangles. Rookie mistake :rolleyes:. Maybe it’s because her Perrin’s point is so sore??! (I am not endorsing...
  2. K

    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    I listened to the programme on playback – wow, impressive and sobering programme. Huge thanks to all patients and @charles shepherd for painting such a vivid picture of patient experience of current NHS treatments. I was impressed at how succinctly patients summarised their experiences and felt...
  3. K

    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    Following on from numerous patients describing that increasing exercise as part of either their GET or CBT made them worse, Prof Crawley explained that GET is “absolutely not” about increasing exercise, but about reducing it: “In graded exercise therapy, people sometimes think that we’re...
  4. K

    "Antibodies to adrenergic and muscarinic receptors in ME/CFS" (August 29 blog post)

    Nice to see converging findings. And these particular antibodies make a lot of sense symptom-wise (for me, anyway). I thought Loebel et al's study was interesting in this regard too. I'm pasting a bit of a previous post of mine here for energy conservation purposes! Fluge and Mella...
  5. K

    Symptoms of CFS/ME are not determined by activity pacing measured by the chronic pain coping inven..

    Your fears were founded, @A.B. The intervention in this study is described as follows: "For patients willing to engage in physical rehabilitation (exercise and graded activity) this involved either participating in a symptom management programme (see below) or individual physiotherapy...
  6. K

    Creating illusions of wondrous effects of yoga and meditation on health: A skeptic exposes tricks

    There was an interesting article in Medscape recently on a study into downsides of meditation experienced by some. The one I found most interesting was that some people experience sound and light sensitivity (but the way it is described in the study is very different from my sound/light...
  7. K

    Science Media Centre expert reaction to Journal of Health Psychology’s Special Issue on The PACE Tri

    Me too, especially since it was written in 2001!
  8. K

    Science Media Centre expert reaction to Journal of Health Psychology’s Special Issue on The PACE Tri

    Yep. Powell et al’s 2001 RCT is interesting in this regard. It’s entitled “Randomised controlled trial of patient education to encourage graded exercise in chronic fatigue syndrome” (Oxford definition). It’s one of the trials considered as evidence for GET by the Cochrane review. The...
  9. K

    Scientists trade insults over ME (JHP special issue)

    Maybe you all know this already, but I found it interesting, as I had not heard of George Davey-Smith before this story emerged. George Davey-Smith was, reportedly, a signatory of a letter in support of Sir Simon Wessely in 2012. The text of the letter is quoted here...
  10. K

    TGF-beta: complex interplay regulator between gut microbiota and immune system

    Really interesting. I’m always keen to know if ideas/hypothetical models like this could explain post-exertional malaise, remission and relapse and even different responses to GET? What would be the predicted outcome(s) if the speed limits/‘go to bed’ signals were ignored? (I’m thinking GET...
  11. K

    Peter White gets set to speak at Swiss Re Insurance Medicine Summit 2017

    Wow. On p.13 the "claimant"s/people with CFS are described as "Highly educated professionals slipping into self-imposed oblivion!" (That is a direct quote. The exclamation mark is in the original.) P.17 summarises: "CHRONIC FATIGUE SYNDROME CURRENT THINKING AT UNUM - Neurosis with a new...
  12. K

    I'm going on a mission! wish me luck

    @notmyself, I see this is not the first time that you have tested yourself with intensive exercise. You described doing the same here: http://forums.phoenixrising.me/index.php?threads/final-conclusions.50037/ Your conclusion at that time was that you do not have CFS. Then you posted another...
  13. K

    Transcendental/chanting meditation curing my insomnia?!

    There was nothing magical about the mantra. Mine was a two syllable nonsense word (i.e. not a word that makes sense in any language). The attempt to create mystique around it did not appeal to me - you were not supposed to tell anyone your mantra, it was unique and designed especially for you...
  14. K

    Transcendental/chanting meditation curing my insomnia?!

    It sounds like you've found a type of meditation that really suits you - you may benefit more from continuing to do exactly what you're doing, with the chanting that you like, than learning TM. I learned TM and have to say I regret it. It cost 600 euro. I had a lovely mindfulness meditation...
  15. K

    Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England

    I hear you. I go for a two-pronged answer for people like this. Something like "My ME is bad but morale is good." It seems effective in flummoxing those who need to be flummoxed. If morale is not great, I won't pretend it is, but I'll say something like "The past few weeks have been tough as...
  16. K

    High cortisol result

    First can I say that I'm so sorry you were attacked in 2012 and suffer from PTSD and agoraphobia. My understanding is that elevated cortisol could be explained by your existing conditions of PTSD and agoraphobia. It sounds like anxiety has taken over today (I hope you don't mind me saying...
  17. K

    Need help if you're sitting most of the day

    Yes, nothing restorative about an hour of anything when you have ME! 20 mins lying on my own floor in silence after following the instructions in the book to get into a nice supported position was about the height of it for me, when I was able for it. My motto was and is "Aim low"!
  18. K

    Refeeding Syndrome

    Where I am it is a dietician who diagnoses refeeding syndrome, using blood tests that must be ordered by a doctor, and it is the dietician who guides the management of it, again in collaboration with a doctor who must prescribe certain things. Refeeding syndrome is extremely serious, but not...
  19. K

    Need help if you're sitting most of the day

    Sorry you're in pain. My situation is different from yours in that I have to lie down most of the day; sitting is limited to mealtimes due to orthostatic intolerance. I find a little daily stretching routine really helpful. I just cobbled one together from stretches I remember from my sporty...
  20. K

    Adding Vegetables and Herbs to Diet

    Hopefully the professional who recommended these vegetables and herbs/spices will be able to help you. A couple of things that may be relevant: 1. If you’ve suddenly increased your fibre intake, it would be normal to have a bit of discomfort at first. The general advice on increasing fibre...
  21. K

    BBC1 tonight — Doctor in the House, featuring "chronic fatigue"

    I too missed the beginning but in the portion I saw there was no mention of ME or CFS, only of "exhaustion" and "chronic fatigue". As others said homocysteine seemed to be the key. His was apparently very elevated at 34.something. He had had what he was told was a mini-stroke or TIA at age 20...
  22. K

    Efamol's Efamarine discontinued. Need something to replace it

    I buy Pharmepa Restore and Pharmepa Maintain direct from Igennus in UK https://igennus.com/. I placed my last order at the end of March for 6 months' supply of one and 12 of another and there were no issues. Vegepa did not make a difference for me even at high dose but Pharmepa did. Pharmepa...
  23. K

    Mark Hyman MD article: "Getting to the Root Cause of MS and Chronic Fatigue Syndrome"

    The piece you quoted is from the section on MS, not from the section on CFS. The section on "Chronic Fatigue Syndrome and Fibromyalgia" does not make the same claims about exercise, although the word "exercise" does appear a couple of times. Scroll down to the second section...
  24. K

    Head pressure, tightness, eyes feel blurry, feel woozy.

    Find a way to see a doctor. We're not doctors and you could miss something important. What you're describing sounds like it could be an ear infection or other ear-based problem - feeling unusually bad for a few days, pressure, pain and clogged feeling in ears, feel much worse when you turn...
  25. K

    Sunblock factor 50 available in UK -anyone found one that works on very sensitive skin?

    Sorry to hear you have this as a side effect. I have very sensitive skin and photosensitivity (not medication related). I know how hard it is to find the cream that works for you, but when you do, it's super. The one that works for me is La Roche Posay Anthelios Comfort Cream...
  26. K

    Opinion Piece: Current Psychiatry and its Discontents

    I'm not a fan of psychologising illness at all. However, I think there may be a misunderstanding here with the Parkinson's example– some medications for Parkinson’s have a side effect for some patients that reduces their impulse control. So some patients with Parkinson’s that is being treated...
  27. K

    UK nursing students warned about PACE! Anecdote only but very encouraging.

    :):balloons: Fantastic that random nurses are being well-educated!
  28. K

    UK nursing students warned about PACE! Anecdote only but very encouraging.

    Yes, I hope so. I ask because the MMR/vaccines issue is often talked about by health professionals as an example of parents/patients not complying with evidence-based treatments, not just as an example of a poor/fraudulent study. This is the spin that I see the PACE authors and people like...
  29. K

    UK nursing students warned about PACE! Anecdote only but very encouraging.

    I'm interested to know the way in which the PACE trial was mentioned. Was the PACE trial mentioned as an example of when the evidence base is misleading or as an example of when patients resist (supposedly) evidence-based treatment? One would make me happy, one would make me sad.
  30. K

    Myth: ME is a mental illness + reactions Vink and Chalder/Sharpe/White

    Comment on Chalder et al's response here http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12101/Myth-busting-a-myth-busting Great opportunity to link to some of the fabulous critiques emerging. @Tom Kindlon Might be a good place to link to your commentary.