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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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Search results

  1. R

    Brain inflammation?

    So has you dr made any attempt to find out whether your inflammation markers are up temporarily or if it's an ongoing problem?
  2. R

    ME Research UK withdraw from UK CFS/ME Research Collaborative

    I love it when a physician demonstrates perspicacity!!! I've met a few and am always stunned when I do!
  3. R

    ME Research UK withdraw from UK CFS/ME Research Collaborative

    Well said. In a nutshell.
  4. R

    ME Research UK withdraw from UK CFS/ME Research Collaborative

    I think you are right. And emphasize that lack of investigations instigated by primary care cause many deaths And that all this MUS stuff is just laziness. It's a cop out. It's not scientific. It's make-believe. It's wasting tax payers' money. It's killing people. Etc etc
  5. R

    ME Research UK withdraw from UK CFS/ME Research Collaborative

    My quotation marks don't show up too well in that post.
  6. R

    ME Research UK withdraw from UK CFS/ME Research Collaborative

    Thanks. This is the type of thing that infuriates me: ' Unexplained symptoms tend to be more common among: women younger people people who've recently had an infection or physical illness, or those affected by the ill health or death of a relative people who've previously experienced...
  7. R

    ME Research UK withdraw from UK CFS/ME Research Collaborative

    Where's the thread about this? I need to update my knowledge. I've been involved in lots of other stuff.
  8. R

    ME Research UK withdraw from UK CFS/ME Research Collaborative

    Thanks.
  9. R

    On Eagles Wings: A Christian Perspective on M.E.

    Yes, On Eagles Wings is an excellent resource for information on ME and is very up to date.
  10. R

    ME Research UK withdraw from UK CFS/ME Research Collaborative

    Who/what advises the U.K. Government on CFS/ME?
  11. R

    ME Research UK withdraw from UK CFS/ME Research Collaborative

    I think she DOES know what ME is but she doesn't want it to be separated from chronic fatigue. She has managed to build her own empire by stealing money which should have gone to research into ME. A lot of the research she does is rather pathetic and doesn't actually help anyone really...if...
  12. R

    BBC Radio 4: The Life Scientific with Simon Wessely, 14th Feb 2017

    Haha!!! Some of these recent posts have had me laughing out loud. I am pleased the programme wasn't aired at night too. It usually is. (And, for anyone who listened to the programme, I nearly fell off my seat when he said he was in Czechoslovakia in 1968! Phew! Near miss! I was there the year...
  13. R

    BBC Radio 4: The Life Scientific with Simon Wessely, 14th Feb 2017

    'Jonathan Edwards said: ↑ Perhaps they are trained to think that patients in clinics are just mad people who will never understand anything presented at scientific meetings or written in scientific papers.' I was just picking up on that too: Over the years I have watched, listened and read...
  14. R

    BBC Radio 4: The Life Scientific with Simon Wessely, 14th Feb 2017

    http://www.bbc.co.uk/programmes/b08dnr3g
  15. R

    BBC Radio 4: The Life Scientific with Simon Wessely, 14th Feb 2017

    I think it is important to note that he stated that neurologists didn't like patients with ME (or CFS as he called it) in 1980 and that is when he became involved. What a dangerous situation. He also didn't mention 'hysteria' or Mcevidyand Beard. Nor that the Royal College of Psychiatrists...
  16. R

    BBC Radio 4: The Life Scientific with Simon Wessely, 14th Feb 2017

    Made me laugh when he talked of narcissism!! Haha
  17. R

    Esther Crawley blog (February 3): "Doing what is right in a controversial field"

    She's a case isn't she? And I do wish she'd stop moaning about what a horrid time she has because of all those mean old patients who keep trying to stop her from practicing quackery. "Doing what is right in a controversial field" Really? Does she seriously think that she has some kind of...
  18. R

    Dr Øystein Fluge to Give Public Talk in Norwich, UK, 26th Jan 2017

    I went. It's freezing in Norwich. I've just got back to my hotel and am trying to get warm. It was great. Really interesting. So good to listen to some scientists doing real scientific research instead of all that crowd who make it all up and pretend they know what they're talking about. And I...
  19. R

    Tests indicate more to my condition but nothing can be found - ideas?

    If you have blood in your stools every so often and feel particularly unwell at that time you may be having a flare of IBD. Blood in your stools should be investigated thoroughly. Get a camera up your backside so a few biopsies can be taken. Things need to be ruled out. You may have more than...
  20. R

    Cold flushes in legs

    Hi Kenny. Can you describe it?
  21. R

    perimenopause?

    Black cohosh might be worth looking at carefully
  22. R

    Most ignorant physicians - neurologists?

    I have always found it amazing that many people in the medical profession don't reflect more on the fact that more females suffer from autoimmune diseases than males. To me, it seems obvious that female sex hormones have something to do with that. So HOW do those hormones affect the immune system?
  23. R

    Rituximab for Vaccination-Linked Narcolepsy: A Patient Greatly Improves for 2 Months, then Relapses

    Surely this is what some of the OLD 'scientists' in the U.K. do with ME research. (Made me laugh when I read that bit). You'll have to try to get this concept across to them. They probably haven't heard of it.
  24. R

    New MEGA study website (30 November 2016)

    No they won't. They'll all retire happily and live off BIG pensions. What happened to all the psyches and other medics who were so cruel to people with MS not so many decades back? Nothing. Sorry. They make my blood boil. But that's the way I see it.
  25. R

    re POTS - Parents who think illness is physical, attribute more disability to patients

    Because they are cognitively impaired and need to make a living. Well...that's all I can think of to explain their lack of perspicacity.
  26. R

    What causes the muscular pain

    Your doctor should elaborate i.e. tell you what is causing the inflammation.
  27. R

    Do your ME symptoms improve when you exclude wheat/gluten?

    Bread acts like a wind-machine on me! But I can't decide if it's the yeast or not. Certainly, sweet corn and fizzy white wine (which I think has yeast) is guaranteed to make me projectile vomit. Anyway, everything is much more calm on a low or no carbohydrate diet. Including myalgia etc. It's...
  28. R

    Do your ME symptoms improve when you exclude wheat/gluten?

    Interesting topic. This is worth reading: http://www.foodreactions.co.uk/intolerance/carbohydrate/index.html I am definitely healthier on a low or no carb diet. I am an IBD sufferer btw. But symptoms are very similar to ME when it flares up.
  29. R

    Canadian charity Action CIND write open letter to Lancet about PACE

    Good letter.
  30. R

    Where to from here?

    Just reading your post and wondered if any of the information in this would help: http://www.dermnetnz.org/topics/dermatomyositis/