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Time Change Equals Jet Lag, ME/CFS Style
Jody Smith marvels at how much difference one hour can make to those with ME/CFS, as much of the world has endured The Time Change in recent weeks ...
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PLEASE PLEASE can someone summarize last nights meeting!!!!!!!!!!!!!

Discussion in 'General ME/CFS News' started by coxy, Jan 23, 2010.

  1. Dreambirdie

    Dreambirdie work in progress

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    Hi Dan--

    Okay, so I agree with everything you said too, EXCEPT the McDreamie! Sorry, but YUK!!!
  2. Wayne

    Wayne Senior Member

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    and by Sing

    Hi Mark, Hi Sing, Hi All,

    Thanks everybody for your contributions. Mark, what you mentioned is quite possibly exactly my experience. I supplement with low-dose hydrocortisone, and find it immensely helpful. Since cortisol levels fluctuate throughout the day, it's always a bit of a challenge (not overly difficult) to supplement just the right amount (usually 20-25 mg/day).

    On a number of occasions, I feel I somewhat over-supplemented, and instead of getting the normal feeliing that my "core health" was being supported, I instead got the experience of going back down a notch (or two). I got weaker (PEM setting in without even exerting myself) instead of stronger and this could easily settle into something even worse. Fortunately, this rarely happens these days because of my extensive experience in supplementing with it.

    Sing, I believe your comment says some things that overlap Mark's. And yes, I do believe it makes sense!:Retro smile:

    Wayne
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Yes, I am familiar with tests that can be run that shows low cortisol. My point was not to say it can't be tested, my point was to say that since it can be high and low, it is difficult to determine whether there is an abnormality based solely on a blood test. I had the saliva test. Mine was low. I had a blood test at the FFC, but they didn't let me eat before the test and looked at in view of the time the blood was drawn. I don't think internists do this. I have not had any internist do this. When I asked, they said the blood test wouldn't determine abnormality because it is so variable. I guess only an endocrinologist or CFS specialist or those who believe in saliva test try.

    Of course, maybe these internists were just trying to brush me off. LOL

    Anyway, point being, cortisol and progesterone, the two hormones Mikovitz said activates XMRV replication, are highly variable even in healthy people, based on time of day, time of month, stress, immune system state, etc.

    Tina
  4. Wayne

    Wayne Senior Member

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    Variability of Cortisol Testing - Jeffries

    Hi Tina,

    I totally agree with your thoughts on cortisol levels, and the variability that is involved. Dr. William Jeffries', who wrote the classic book "Safe Uses of Cortisol", was quite emphatic that the only way to really determine whether a person needs cortisol supplementation is to do a trial run.

    Doing so and realizing how much my body needed this supplementation was almost like a miracle for me. I think it could be equally miraculous for others on this board, but I'm also acutely aware of the devasation that can occur if someone is not extremely careful in doing any trial supplementation.

    Wayne
  5. usedtobeperkytina

    usedtobeperkytina Senior Member

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    oh, and the comment from someone, sorry, can't remember who, about how complex it is involving so many systems so that we all have slightly different manifestations and biological test abnormalities is very true. I think that is why I saw CFS is the immune system dysfunction, not an XMRV infection. My theory is that the virus might actually have gone back into dormant stage, but the immune system damage (and resulting neurological and endocrine damage) is the illness. Although XMRV is the cause (according to current theory) it is not the result.

    This reminds me of Gina who appeared on Dr. Oz. She is XMRV positive. Yet I was shocked to hear her say she has high blood pressure. I have low blood pressure. And most people with CFS, according to what I read, have low or suddenly dropping blood pressure.

    Again, some of us get it gradually and some suddenly. Mikovitz said this clinical difference had no bearing on whether the person is XMRV positive.

    I never had swollen lymph nodes. (at least in the neck.) I lost weight, yet most patients say they gain weight.

    I didn't have sore throat until three and a half years into the illness. And it was always mild.

    I had vertigo, but it was slight, only came when I took a warm bath. Yet Laura Hillenbrand's vertigo was so bad she had to stay immobile in her bed.

    I think this, again, reflects that it is a retrovirus that can affect different cells. I can't remember who, but someone said it can infect neurological cells. We know it can be in prostate tumor cells. And we know it is in some immune system cells. Maybe the different symptoms are based on what system is more XMRV infected.... or maybe it depends on which system is weaker in that person (genetic predisposition) .... or maybe it depends on how the DNA is affected by XMRV, since the virus affects other genes in the DNA- maybe that affect is different based on the particulars of how and where the virus infects those particular cells..... or maybe it just depends on what latent virus the person has when the XMRV decimates the immune system- so that the symptoms are based on whether your reactivated virus is EB, an enterovirus, cytomegalavirus, HHV-6 or Lyme.

    I feel like we on an episode of "House." We are all postulating medical theories on a case presented to us to not only diagnose, but figure out how the disease process works in this case.

    If I were a researcher, I would find this very exciting. The complexity makes it like a mystery novel. With so many players as possible culprits, the challenge is greater, therefore more interesting. If there were only three characters in the mystery, it would be very easy, and therefore not as challenging and not as interesting to find out who did it. But in the case of CFS, with so many different systems and variables, the potential for discovery is great.

    Tina
  6. Dreambirdie

    Dreambirdie work in progress

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    One man's miracle is this woman's hellish year long setback... from which she has not yet recovered fully.

    Taking HC (as I've often posted) was the ABSOLUTE WORST THING I've ever ever done, in my 32 years of CFS. It overstimulated the hell out of my adrenals, and then CRASHED THEM. Oh how I wish I had not fallen for the info in that Safe Uses of Corstisol book! It all sounded so wonderful, and then turned out (in reality) to be so very very WRONG.
  7. starryeyes

    starryeyes Senior Member

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    Sorry that happened to you DB and thank you for sharing that. We need to know the risks we're taking when or if we try things. I react horrible to almost everything so I know I wouldn't try it.

    Wayne, do you have typical ME/CFS? I know that means different things to different people but I mean flu-like and mono-like symptoms as well as CNS and neurological problems especially orthostatic intolerance.
  8. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I am not advocating cortisol supplementation. Although I am on it and don't notice problems, it may not work for everyone. (See other post about how we all have different manifestations and different biological abnormalities.)

    But maybe since the two hormones that affect the replication of this virus are highly variable even in healthy people, maybe bring the levels into a more even keel will help. Again, so that we have what is needed to function, but not the downs that cause other abnormal reactions, or not the highs that cause XMRV replication.

    We all know that avoiding stress is highly recommended as part of treatment of CFS. Maybe it is because it prevents the highs and lows of cortisol. And I know my symptoms are much worse, honestly, as my progesterone starts to fall in my monthly cycle. Now that seems counter intuitive. Maybe the higher levels cause virus replication, but I don't get the illness affects until the progesterone starts to drop, making the affects of the now flourishing virus do more damage than when the progesterone is higher. Or maybe the virus is very active in the times of the month with higher levels of progesterone, but the times when I feel bad, when progesterone is dropping, I am suffering from the high cytokines trying to fight the problems from all the XMRV doing its damage, such as latent viruses being reactivated.

    Tina
  9. Dreambirdie

    Dreambirdie work in progress

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    Hi Tina--

    That's me who said that, and yes that's why what works for one person with CFS can be another's demise.

    I think the dysfunction is NOT JUST IMMUNE tho. It's also NEURO and ENDOCRINE, with many variations on a theme. Like a
    drunk orchestra playing dissonance. :eek: Yup, throw in some toxic heavy metal lead guitar, and that describes my body.
  10. kurt

    kurt Senior Member

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    I thought several of Mikovitz's points needed some qualifications, such as the progesterone comment. Clearly she was theorizing there and probably she should have mentioned that only applied to XMRV and not to other complicated elements of CFS. In her defense, she did qualify many of her statements, clearly stating for example that the XMRV finding is still a hypothesis with regard to a causal CFS model. I think that is an important point. Probably she was just trying to get so much info out there she did not have time to qualify everything as much as she would like, had to leave out some details.

    I guess some of us picked up on different aspects of what Mikovitz said. My focus is more on research methods and what surprised me in the presentation was that they had to run the samples multiple times often to get a positive. WHAT??? That should have been reported in the Science article as a possible confound, because that increases the risk of false positives. Also, she mentioned that apparently XMRV waxes and wanes and they had multiple samples for the 101 test subjects, at different times, to work with. That is another important research detail we should not be hearing for the first time this late after the Science article. I'll bet the researchers running replication studies will be surprised to learn this, and will start to wonder what else was left out of the Science paper. Obviously XMRV is far more difficult to detect with PCR than the Science article led us to believe.

    On the positive side, I think Mikovitz made a good case for the presence of XMRV in at least a subset of CFS with her presentation. And the international samples, that is important information. But the presentation also raised some questions in my mind regarding methods. At this point I really want to hear from other labs running replication studies, particularly those working closely with WPI.
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    DB,

    I love this!:tear:

    Do you think the CDC could adopt this a their new "descriptive" definition of CFS? AND, how would we turn that into a snappy new name for us? Let's see...I'm brain-stumped here, but I bet somebody could hit the right note...:ashamed:

    Sushi
  12. Dreambirdie

    Dreambirdie work in progress

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    Hi Sushi--

    Hmmm... the best I ever came up with virally induced HUMAN COLLAPSE DISORDER. But that's not funny enough. I stole it from
    the bees--they have Colony Collapse Disorder, so as usual we're in good company.

    How about HEAVY METAL X IMMUNE DISSONANCE. :Retro tongue::Retro tongue::Retro smile:
  13. Wayne

    Wayne Senior Member

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    Typical ME/CFS ?

    Hi Teejkay,

    I also imagine that typical ME/CFS might be viewed differently by different people. That said, mine is about as typical as it comes. Very serious head injury/whiplash trauma at age 15. Cognitive function starts to decline (typical grades of A's & B's to B's & C's). Didn't realize at the time how I was slowly but inexorably sinking into more and more brain fog.

    It seems in my case there's a genetic element to my vulnerabilities. As years go by, I notice I'm starting to become more and more affected by all sorts of chemical and environmental toxins. I continue on my "gradual onset" coarse, and eventually realize I can't exercise well and maintain my conditioning. I can work for a few months at a time, but then exhaust myself and have to not work for several months.

    Around 1984, almost 20 years after my initial trauma, I get what feels like a mononucleosis. The vertigo becomes quite intense, and I begin to experience many things that would be typical of somebody experiencing a "sudden onset" case of ME/CFS. This was when I first started experiencing orthostatic intolerance, balance problems, all sorts of neurological anomalies.

    I worked very part time through the rest of the 80's, and decided to try a full-time job in 1992. I made it through a little over a year. At the end, I started spending half my time at work taking breaks (taking sick leave) in my van where I would wonder how much longer my body could take this. I eventually had to quit and my last day of work was October 21, 1994. I haven't worked a steady job since then.

    The rest of the 90's and up to the present, all my neurological problems have continued to become progressively worse. Under this category, I would include CNS dysfunction, vertigo, OI, CFS dementia, as deep an exhaustion as I could have ever imagined having, almost like I could even experience it in my bones. (All these symptoms BTW helped by supplemental cortisol). I even have several of some of the most "off the wall" symptoms that some people have reported. I won't mention them here because I forget what some of them are (perhaps a time when memory loss is not such a bad thing.:Retro smile:)

    BTW, I am happy that you made your way over to this forum (can't remember if I welcomed you earlier). And of course, whenever I see you post, I always think of the youtube video you made that I still enjoy watching on occasion.

    Best, Wayne
  14. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Kurt, I think WPI are saying the reason for running it so many times is that just running it once increases chance of FALSE NEGATIVES. She is still saying those getting tests now are possibly going to get false negatives instead of false positives. I don't know why their looking at it in four different blood draws increases chance of false positives. But she must have known how this virus sometimes goes dormant, so they looked for it at four different times.

    Honestly, I think this reflects that she knows a lot more about how this virus operates than she is able to say publicly right now.

    I do agree that for other researchers wanting to replicate, that piece of information about how often she had to look for it in draws from different times would be important. But the point of the paper to say what was discovered and where. And it told what type of test. I don't think Science considered the number of tests affected what was found or where it was found.

    Although I didn't hear the part of the Jan. 22 talk about progesterone, but I have heard her in T.V. news report and she didn't say she "thinks" cortisol and progesterone "turns on" the virus. She said it does.

    Tina
  15. starryeyes

    starryeyes Senior Member

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    Thanks for the Welcome Wayne and for reposting my old vid. Hugs for all you have been through. You've really had a rough time.

    tee
  16. Sing

    Sing Senior Member

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    Just to comment on a few postings, Dreambirdie, I liked your idea of calling this "Human Collapse Disorder" with its connection to what is going on with honey bees, "Colony Collapse Disorder". Intuitively I have felt akin to those bees. On the larger scale, there is a great deal of collapsing going on in the world, old structures and institutions...

    Tina, usedtobeperkytina, I so often appreciate your thoughtful analyses and good thinking. Even if you or any of us can't figure all this out with the data we have, still, the exercise of trying to helps us all be more acute, skilled listeners and questioners each time another researcher or doctor presents further information. Of course, a number of us are trying to contribute our analyses and hypotheses, and I am grateful.

    Tee, teejkay, I watched your video for the first time and found it so poignant and sympathetic. The kind of suffering we've had, in isolation often and most frequently, with misinterpretation and misunderstandoing--that is a story which needs to be told.

    Wayne, thank you always for your forthcomingness and kindness. I learn and receive from your posts.

    Thanks all,

    Sing
  17. kurt

    kurt Senior Member

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    Tina,
    A false positive is caused by some type of chemical problem, or sometimes by contaminants. False negatives can be cause by the sample volume being too small. In this type of testing the rate of false positives and false negatives can be calculated, this can be calibrated from known positive and negative control samples. If WPI had to run the test multiple times, yes they probably were attempting to reduce false negatives. But that still does increase the risk of false positives, because if you run a test over and over, and the test can produce false positives, you will eventually get a false positive on ANY sample tried. This is a serious problem, particularly because the type of standard PCR test they ran has more problems with false positives than false negatives. And this does invalidate part of their Science study, I don't know if they told this to the reviewers, but basically this changes their sample volume. For example, if you have to take four samples on average to get a positive, then you must multiply the sample volume reported by four. If you ALSO hunt through four different draws taken at different times for the same patient, and then run each draw four times, you must multiply the sample volume reported by 16. If this is what happened then the risk of false positives was 16x higher than reported.

    I don't think this shows that WPI knew more about the virus, it only shows that they had a hard time finding XMRV, harder than they led people to believe. That increases the possibility of a false finding, that should have been reported so people would understand the risks of replication studies, and how to run them.

    As for Science, I don't know what WPI shared with them, but I do know that WPI is trying to make a case for research funding for XMRV and as a result probably they are being careful in what they say. But that does not justify leaving out important details like this, WPI has an obligation to the scientific community to report their study adequate for replication efforts, if that was not done, they are causing other labs to waste a lot of money running tests with parameters that will not find XMRV.
  18. Katie

    Katie Guest


    Ok, layman here. Right, you're saying that a false positive is caused by a chemical problem. What you don't say is a what statistical chance chemical problems occur - is it 1 in 100, or 1 in 100,000? This would greatly effect the rest of your deduction as to how great a risk a false postive is. It could be massive, or it could be neglible or anywhere in between. I also do not see how this would invalidate their study, that's a huge leap to make even as a sceptic.

    Even HIV was hard to find at the beginning, that's why so much effort is being put into standardising the test. To say that the WPI misled people is disingeneous - they aren't just using PCR, they are looking for this from many different angles including serology and culture, Judy Mikovits said this herself. They are providing all the help needed to ensure more than adequate replication, their study has been supported and replicated by the NCI and the Cleveland Clinic, we're not talking a backwater moneymaking lab here.
  19. kurt

    kurt Senior Member

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    Do you think that any challenge of the WPI study means the person is skeptical? I am really not a skeptic, but I am also not a blind supporter of this research. I am trying to be realistic and objective, which is essential if one is to correctly interpret research results. With a background in research I know full well that no research study is perfect. I am sure that WPI is sincerely trying to help PWC, but sincerity does not correct research mistakes. And if mistakes have been made they must be found out. If this turns out to just be something unimportant, then fine. But you never find the problems if you do not look.

    Anyway, regarding false positives, that can be tricky and I am not a PCR expert, but I do know that there is always some risk, and that research risk increases when the test is run multiple times on the same sample. So that should be reported, but it was not, until now.

    The antibody and culture studies ultimately depend on good PCR findings. WPI obviously is not involved in all the validation and replication attempts (such as the IC study), and the Science article was clearly incomplete.
  20. Katie

    Katie Guest

    Thank you for clarifying Kurt. I was not calling you a sceptic based on this one post but on the impression I have gained of your take on WPI and it's approach through reading many of your posts. You do come across as a sceptic, not in a 'the world isn't round' kinda way, but in a 'they've not done enough to put me on the fence, let alone the otherside' way. Clumbsily put but is sums up how I read your position. It's not meant in the perjorative sense.

    As for WPI not being involved in all replication studies I was not clear. If a scientific group had approached them to let them know they were undertaking a replication/validation study, that the WPI were willing to provide whatever they needed, samples, information, techniques etc. This was made clear during the Prohealth video during the Q&A.

    I still think that until you can quantify the risk of false positives (even a ball park figure) you can't state how the WPI may have misrepsented their results regarding false positives, especially as you state you do not know what information was passed between the Science peer reviewers and the WPI. I'm not sure if Judy Mikovits is still answering questions but if it is a great concern you could always ask her.

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