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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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Article: Report From the OFFER 2010 Conference

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Sep 28, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Esther12

    Esther12 Senior Member

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    Thanks for that. Interesting stuff.
     
  3. paddygirl

    paddygirl Senior Member

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    When you mention spinal cord compression it makes me think of the latest finding in MS.

    I saw some videos on Youtube about the Liberation technique. This was pioneered by an Italian doctor whose wife has MS and after much testing he saw that the major neck arteries were narrowed and in some cases twisted.

    Many people with with MS responded well to having a balloon type treatment on the neck arteries, allowing extra blood flow. Some improved dramatically.

    In relation to the overlap between FM and ME/CFS I saw an interesting article by Dr Perricone on Prohealth about how he sees that overlap, a bit like those math diagrams with the overlapping circles. His theory certainly fits my experience of predominant FM leading to equal FM/ME by process of a slow downward slide.
     
  4. Cort

    Cort Phoenix Rising Founder

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    I forgot about that MS stuff! My 'neck story' involves my deciding to do neck stretches because I had so much tightness in my upper back and neck area. After a week or so I started nauseous - VERY nauseous - a couple of hours after each stretch. Then my chemical sensitivities just went through the roof.

    I thought - this is it! I'm finally REALLY falling apart. First I tried to get a root canal removed (dentist wouldn't go for it) and after a month or so I stopped doing my neck stretches and everything went back to normal.....I couldn't believe such a little thing could cause such distress.

    I saw Dr. Perrin at the last conference - he thought I had some issues in that area. I'm sure lots of people do - why they might effect people with ME/CFS more I have no idea. Standing up really straight has always helped with me.
     
  5. paddygirl

    paddygirl Senior Member

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    I'm always fascinated by how circular ME/CFS is. What I mean by that is how many of our symptoms are caused by our symptoms. For example, pain creates tension. Tension creates more pain. Pain stops sleep, bad sleep leads to exaustion and pain. So much seems to depend on breaking those cycles.

    Last week I started a very gentle yoga class sponsered by the Irish ME Trust. I've done yoga for years but now I can just do the gentle stuff. One woman who had never done yoga had a look of wonderment on her face at the end of the class, she wanted to take the teacher home, hopefully that meant some cycle was broken or at least interrupted for her.

    As with many of us I'm sure, I get well meaning friends and family making 'suggestions' of what to do to get over this. I always say now that in an ideal world....if I had the money I'd not work, line up therapists, get some seriously good nutrition in a warm climate. Of the people I know, those who have managed to cut that work stress seem to stabilize to a greater degree and don't seem to have so many peaks and troughs.

    Paddy
     
  6. Jim

    Jim Senior Member

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    Dr Singh said the samples in the Science paper were handled differently, but didn't Judy say, in a follow up to the article, that they were handled the same? So any idea what Dr Singh is refering to? I think this is a most critical point.
     
  7. Esther12

    Esther12 Senior Member

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    This is something I'm interested in too.

    They mentioned the study being blinded - but at what point were samples treated identically? Weren't some old CFS samples used - so it can't have been from the point of blood being drawn. Could some difference prior to the samplese being blinded and randomised have affected the results? I really wish they had provided more info here. They didn't even mention blinding in the initial Science paper.
     
  8. LaurelW

    LaurelW Senior Member

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    I asked Dr. Singh about this, and from what I understand, they got new blood from all the people who they previously tested and are testing them again.
     
  9. CBS

    CBS Senior Member

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    This is key, not only if issues with collection and storage were playing a role in some labs finding the virus and some not finding it (XMRV/MLVs) but perhaps also with the percent of positives found within the labs that are finding some positives.

    Dr. Singh's study with participants all giving blood at the same time and with identical handling and blinded analysis, especially in combination with her autopsy study, should answer a lot of questions.
     
  10. Berthe

    Berthe Senior Member

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    Thank you

    Dear Cort,

    Don't know how to expres my gratitude for everything you do.
    You are inspirational.
    I actually thought you were having a relapse and I was worried. Now I know you have been so busy writing.

    Love,
    Berthe
     
  11. xrayspex

    xrayspex Senior Member

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    u.s.a.
    FM stenosis dr wood MS etc

    "
     
  12. Hope123

    Hope123 Senior Member

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    Cort,

    I remember reading that the controls for the Science study came from around Incline Village/ Nevada area. One set of controls were patients of a practice(s) that had been deemed healthy by their physicians. Another set came from a lab which tested healthy people for reasons of paternity/ familial-type reasons. I thought they specifically found controls in this geographic area because a fair percentage of Science CFS subjects (25%?) came from the Lake Tahoe area.

    Alter study used blood donation samples from around DC.

    Also, Dr. Singh's autopsy study -- do you know if she is examining bodies who have ME/CFS or other disorders or just whatever bodies were donated? This could affect if and where she sees XMRV.
     
  13. CBS

    CBS Senior Member

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    Dr. Singh's autopsy study started three years ago, before any association with ME/CFS was suspected. The 150 bodies were simply the first through the door. All of the bodies were obtained while she was in NY. That means that she's had the samples for a couple years. Whether or not she's had additional tissue samples taken from these bodies and sent to her since moving to Utah wasn't discussed. I imagine that it is possible as she retains a faculty position at Columbia and she has close ties to the virologists there.
     
  14. Cort

    Cort Phoenix Rising Founder

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    My understanding is that CFS samples in the WPI study were all handled the same - they all came through the WPI but they got the healthy controls from elsewhere - which means the blood was probably handled and stored differently. THe WPI probably didn't have the money to find 100 human samples and may not have used it on that anyway. The Science paper, as I understand it, was meant to open the door - and get XMRV as deeply into the research as it could - which it obviously did. It was not meant to dot all the i's and t's regarding cohorts - Dr. Mikovits has noted this.

    That's what the followup studies are for! In several ways Dr. Singh's appears to be quite definitive; she's using very safe if less sensitive techniques (close the door on the contamination question), she's using culturing (direct replication), she's using controls and patients from the same area using the same blood storage techniques.....

    Kim McCleary told me she thought this was the study to watch out for.
     
  15. Cort

    Cort Phoenix Rising Founder

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    I imagine many interesting conversations about ME/CFS have and are occurring in the corridors of Columbia and between faculty past and present; there's Dr. Singh, Dr. Goff, Dr. Lipkin and Dr. Racaniello - if I got them all right.....We've always wanted to get represented at major medical Universities. If XMRV turns out we could have a nice place there.
     
  16. Rrrr

    Rrrr Senior Member

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    did you ask singh if she wants any new me/cfs bodies? i'm serious. i'd love to donate my body to xmrv (and related viruses) research.
     
  17. anciendaze

    anciendaze Senior Member

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    There have been problems finding biomarkers that have bothered me for some time. What you have said here is sufficiently close to something I've predicted that I'm going to go out on a limb and state a wild idea which has been kicking around my head for a while.

    We tend to look for a kind of Platonic world with clear and simple behavior complicated by the ugly complexity of external reality. In some cases this works fairly well. I'm beginning to think this is one where it does not.

    It is possible for even a small idealized system to exhibit chaotic behavior. This makes it unusually sensitive to perturbations. It can have periodic behavior of any period, and switch periods dramatically for no apparent cause. Over a long time it can look completely random, even though it is deterministic.

    If you were to set up such a system in cells, and carefully synchonize them, the synchronized behavior would quickly disappear. Signalling between cells would be messed up by this.

    Instead of having a nice simple model with noise introduced by outside interactions we could be seeing a model which is inherently noisy, even if you narrow things down to a minimum. If this is true, the noise we have been rejecting as bad data may be the most significant part of the signal. The pathology could start with XMRV infection introducing a limited amount of noise into biochemical signalling.

    This would explain something which has bothered me considerably, the fact that the disease does not generally appear to progress past a certain point, despite an absence of any obvious limitation. There is a limit to how much you can randomize a subsystem before you start creating new order.
     
  18. CBS

    CBS Senior Member

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    I'll let you know what I learn as I have raised this topic, not with Dr. Singh but with Dr. Bateman's clinic (I've instructed my wife to leave my body at the clinic, either over night or on a weekend :worried::ashamed:). The Univ. or Utah has a body donation program but it does not appear to be geared towards something as specific as naming a particular research topic or scientist.
     
  19. CBS

    CBS Senior Member

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    That's an interesting limb. Thanks for putting your thoughts "out there."
     
  20. Revday

    Revday

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    I enjoyed your post. Help me understand what your saying about doesn't progress past a certain point. I know my illness has increased in severity for the past five years and I've had CFS since 1986. I'm now recliner or bed bound most of the day.
    Thanks. :sofa:
     

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