1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
Discuss the article on the Forums.

aussie study, diagnosis cfs/XMRV???

Discussion in 'Latest ME/CFS Research' started by heapsreal, Oct 21, 2009.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,116
    Likes:
    4,365
    australia (brisbane)
  2. mikipe2

    mikipe2

    Messages:
    65
    Likes:
    2
    Australia
    Very cool.

    It's interesting that the Bond press release doesn't actually mention XMRV.
  3. Alice Band

    Alice Band PWME - ME by Ramsay

    Messages:
    175
    Likes:
    0
    UK
    Any chance one of the aussies here would give her a call and see that she will be testing for and which criteria of CFS she will use?

    I'd do it myself but far away and too weak.
  4. susan

    susan Senior Member

    Messages:
    269
    Likes:
    14
    Gold Coast Australia
    Bond Uni gave us less than a day to inform our support group that they had this funding and wanted and wanted publicity. Myself and out facilitator wee not able to go so Bronwyn went instead.

    They have been working with our group and BLOOD for about 2 yrs now, studying something like neuropeptides and came a year ago and gave us an update at our Gold Coast group. We have good contact with them and they ae coming in Novemeber. I will post a special thread to ask you the questions you want answered....sometimes they talk too technical and might be difficult relaying it back.

    My doctor who has CFS gets concerned that some of these grants just buy jobs, so I would like to screw them down to telling them what we expect from them.....taking into consideration WPI s findings. I thing the findings now give us so much more clout.
  5. Alice Band

    Alice Band PWME - ME by Ramsay

    Messages:
    175
    Likes:
    0
    UK
    Thank you Susan, neuropeptides is too general. If you can please nail them down on specifics and also what criteria they will use for the study.

    I do hope that they take the new findings into consideration. Good luck!
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,116
    Likes:
    4,365
    australia (brisbane)
    hi

    After emailing my doc, he assumes its more about diagnosis from symptoms. But its all abit vague. Maybe with all this new stuff on retroviruses the might start looking into that.

    Is there a website for the cfs support group on the coast??

    Ta
  7. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Aussie CFS Testing

    I hope they do test for XMRV in the Land Down Under. The more we test the more we'll know.

    I found this interesting: "After a couple of months of having acupuncture my acupuncturist said she thought I might have chronic fatigue syndrome (CFS) because she couldn't treat me.

    My acupuncturist couldn't help me either and she really tried. I went to many different ones before her and none could. Later I read that we are resistant to treatment like this. We are tough to treat.
  8. zoe.a.m.

    zoe.a.m. Senior Member

    Messages:
    361
    Likes:
    17
    Olympic Peninsula, Washington
    This is interesting. I personally doubt that it's a matter of CFS being resistant to treatment and more a matter of finding someone who really has the skills to treat it. I have found that, just as you can see 20 doctors who don't understand, you could see 20 acupuncturists who don't either. It's not for a lack of wanting to sometimes, but CFS is considered one of the most difficult conditions to treat in TCM.
  9. annunziata

    annunziata Senior Member

    Messages:
    111
    Likes:
    1
    Hudson Valley
    I was interested to see this mention of acupuncture. Back in 1993, I found an acupuncturist who got me through a life-threatening opportunistic illness (pneumonia and tonsillitis). I had lost 20 lbs. in a month, had fevers spiking to 103, could not get up off the floor, and everything had turned gray -- I couldn't see colors at all. Yet when someone took me to an emergency room, and I explained to the doctor I had CFS, he laughed and sent me home. Two people living nearby got me to an acupuncturist who, as I lay on the table the first time, did something to my ear that immediately caused the swollen tonsil to shrink and the fever to break. I was astounded. It took all summer, but he got me back to where I had been before...'merely' very ill with CFS/ME. He worked on me regularly for a couple of years. He could get me almost completely symptom-free, but it could never be sustained.

    After he stopped practicing, I tried every other acupuncturist in the area. None of them could do what he had done, and they were all dreadfully ignorant about what CFS actually is.

    Amy
  10. mgb

    mgb

    Messages:
    17
    Likes:
    0
    I am on the list for the new research at Bond uni. I emailed sonya from the uni a couple of days ago, asking if they would be testing for XMRV in the study. Her reply was that they aren't currently testing but would be seriously considering it. I hope they do.

See more popular forum discussions.

Share This Page