Breakthrough ? is this the one ?

Discussion in 'Fibromyalgia Main Forum' started by quilp, May 29, 2009.

  1. quilp

    quilp New Member

    And if it is, where does this leave the psychiatric lobby ? Afterall, i'm sure they are not suggesting I could think this urine test whatever colour i want, even with my 'abnormal illness beliefs'.
    I am not yet convinced, partly because I just cannot believe what I am reading. What interests me most is that the mechanisms of the illness are now claimed to be fully understood.

    Kind regards, Mark
  2. quilp

    quilp New Member

    Hello Kamina, you are quite right and upon further reflection I too am in amazement at what might happen to all those CFS clinics set up around the UK. I attended the one in Leeds a few years ago, and I have to tell you, that to be offered CBT and GET when ever sinu, every fibre of my being was screaming pain, well, where could I go from there.
    Oh,at the very least we live in interesting times, but I have to tell you, behind my warms words and provoking comments, i am raging with incandescent anger. Please please please let this be true.

    Kind regards, Mark
  3. Jayna

    Jayna New Member

    it still doens't promise anything like a 'cure'. Nobody knows what causes the over-production of Hydrogen Sulphide in our bodies, and nobody knows how to stop it happening.

    All this shows is that one more piece of the biochemistry of our very real illness is now known.
  4. znewby

    znewby Member

    Have patients under Dr. De Meirleir's care in recent months claimed to be recovered?
  5. skeptik2

    skeptik2 Member

    This may very well turn out to be just another "symptom" of ME.

    I'm not holding my breath.

    The whole theory is being put down my others; will try to find the emails I got about it from Jan v. Roihan.

  6. birding55

    birding55 New Member


    I'm new to the boards, but I wanted to make my experience known to others who may be interested. I'm not recommending anyone do anything, just wanted to provide some information. I've had CFS/ME for 12 years. For me, it started within months after an auto accident which was then possibly followed by either a viral illness or a work induced major flare up. I've been ubable to work since and spent as much time in bed as out over the years. Right now, however, I'm able to be up and about at home much of the day. I feel very lucky to have that amount of progress. It's mostly due to taking an extended release amphetamine, but for me it's worth risking flares. Like so many others, I've battled the system as well as family and friends who refuse to believe this is a "real illness". I've had abnormal testing in the past that was consistent with CFS/ME, but couldn't be considered diagnostic in an objective sense. When I heard about the new urine test that seemed to differentiate CFS/ME patients from healthy controls I had to try it. (I've had bouts of self-doubt too.) I performed the test this morning for the 3 minute color change period and it showed a "strong positive" result. I now have to figure out if this takes me anywhere treatment-wise. It may not, but it is something I can show to my doctor and others. Most importantly, if this test gains credibility as a diagnostic tool, it will be something I can remind myself of every time I start blaming myself for my limitations. In the meantime, I'll be seeing my doctor in a month to discuss what a positive result really means for me.

    P.S. I also gained 105 pounds during the first few years with CFS/ME, but I was able to lose all of it since July 2008. I'm not affliliated with any company in even the slightest way other than as a consumer. I did it by carefully and strictly using one of the well known weight loss programs on my own. I bought products for nearly a year then weaned off. I wasn't able to exercise. Every time I try I get worse, but I did walk around the house and yard casually whenever I could. I'd be happy to tell more or answer questions. I just don't want to come across as pushy or selling anything other than the idea that there are some things we can change.

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