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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. Carrie-Louise

    Essential oils (aromatherapy)

    I don't think there's such a thing as an illness that's "too serious" to treat with essential oils. They're used for everything from cancer to schizophrenia. I suspect we are all so defensive about ME being regarded as imaginary or trivial that we can maybe tend to be wary of trying...
  2. Carrie-Louise

    CFS = Immune Dysfunction?

    Thanks I read it. I have a few basic questions: Is there any independent data on what percentage of tested patients manifest this T-shift he theorises? Is there any data on how effective his treatment protocol is? Is there any data to suggest ME sufferers are predisposed to get cancer...
  3. Carrie-Louise

    CFS = Immune Dysfunction?

    If low cortisol is a problem for many ME sufferers mightn't that again be linked to an overactive immune system, since cortisol acts to suppress immune responses?
  4. Carrie-Louise

    CFS = Immune Dysfunction?

    Oh very interesting. I appreciate what you're saying about hyper and hypo immune responses co-existing. Very possible this could apply to ME. I'm not sure about the cluster of diseases though. If we really consider ME/CFS to be merely a symptom cluster then surely it follows we don't "have"...
  5. Carrie-Louise

    CFS = Immune Dysfunction?

    I'm not convinced by that. A healthy immune system doesn't attack itself and so wouldn't produce CFS symptoms. Isn't it more likely that those with a longterm viral problem are suffering an illness due to the virus itself. which while resembling ME isn't actually ME?
  6. Carrie-Louise

    CFS = Immune Dysfunction?

    When you say an autoimmune disease can "mimic" CFS that's not really what I mean. I think CFS/ME is autoimmune itself. The fact so many people report an absence of other infections while in the grip of ME is, to me, very significant. Mightn't some sort of autoimmune issue also give rise to the...
  7. Carrie-Louise

    CFS = Immune Dysfunction?

    Personally I suspect ME/CFS is more likely to be autoimmune - that is the immune system is overactive - than due to a weak immune system. Like other people here I've noticed I rarely get colds or flu when I'm in a severe bout of ME, and - most significantly - when I had a serious bacterial...
  8. Carrie-Louise

    does a fractured bone make the cfs symptoms worse?

    I broke my wrist eight weeks ago. The cast came off two weeks ago, and the healing is progressing well. It's still swollen and painful and stiff, but that's to be expected for a few weeks yet. My only issue is that my cfs symptoms have gone through the roof and remained there since the...
  9. Carrie-Louise

    My Gut is.... Poll

    I used to get the usual stomach pains, diarrhea/constipation thing when I was very sick, and then a few years ago I developed an atypical appendicitis that resulted in rupture and abscessing. Docs were very puzzled about why and how it happened in the way it did, as I was feverish and septic...
  10. Carrie-Louise

    How do you describe "flu-like"

    I take 'flu-like' to refer to the aching joints, chills and malaise, and not to upper-respiratory type symptoms (I'd call those 'cold-like').
  11. Carrie-Louise

    Alcohol Tolerance Poll

    I get the tachycardia too. When I was at my worst with ME I couldn't touch a drop of alcohol without feeling immediately hungover and getting awful palpitations, and actually I used to find the thought of alocohol nauseating too, Now, I am okay with a small amount sometimes - but I still have to...
  12. Carrie-Louise

    My ME/CFS Story

    Flutterby - hi your blog seems to have gone, have you changed the name?
  13. Carrie-Louise

    What has helped against your trigeminal neuralgia?

    ! used to get this terribly - I totally sympathise. I used to find hot water bottles or heat pads helped - and also sipping hot water and letting it bathe the inside of the cheek on the affected side. Gentle head massage too sometimes.
  14. Carrie-Louise

    Going upstairs

    Stairs were one of my big nightmares - still can be when I get into a relapse. It was /is hard to convey the fear I could feel about those everyday objects. The stairs at home are quite steep and they used to represent this impenetrable. When I was upstairs I'd feel marooned and lost. I...
  15. Carrie-Louise

    Less is more?

    Thanks for the replies! I do totally agree that meds are sometimes essential, and would hate to deter anyone from taking anything they really need. We just have to be very aware of the potential side effects I suppose - even more aware than non-ME sufferers. Personally, if a symptom isn't...
  16. Carrie-Louise

    Less is more?

    This is my second post! So, hi everyone. Does anyone think that we are better off avoiding as much medication as possible, given that all meds put some strain on the body and can bring their own side-effects? From my contacts with the medical world I'm aware of the massive high rate of...
  17. Carrie-Louise

    Fried food 'fine for heart' if cooked with olive oil

    That's interesting info - thanks! I'm going to use coconut oil and butter for all frying in future - and it's true you don't need extra fat for frying meat at all.
  18. Carrie-Louise

    Fried food 'fine for heart' if cooked with olive oil

    Hi - I'm Carrie-Louise. This is my first post.:) Just wanna say - don't use sunflower oil! It's one of those oils that has to be chemically extracted and traces of the solvents remain in the finished product, which could be very nasty for people like us. I tend to only use cold-pressed oils...