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Subsets of ME/CFS

Discussion in 'General ME/CFS Discussion' started by Nielk, Aug 26, 2013.

  1. alex3619

    alex3619 Senior Member

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    :) It seems, yet again, we are waiting on Lipkin et. al. . We are definitely waiting on something. Sooner or later the findings explaining what is actually going on will be found. I do not trust the CDC either, but in one sense it is not about trust. Either they will, or they will not, do the research properly. We wont know until after its released. Should they stuff up again I will not be surprised, but there is no guarantee that will happen, especially since they know we are going to be looking at any claim from them very very carefully.
     
    SOC likes this.
  2. alex3619

    alex3619 Senior Member

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    There are two issues here. The first is that it has not yet been shown to be unique, only unique as far as we know. If its unique and nearly universal in ME, then its a diagnostic biomarker. The science is not there yet, but its progressing.

    The second point is that if its not unique then its about pathophysiology, not causation. Its still important.

    PS Third possibility. It might not be unique, but it might be unique in combination with one or more other factors. In that case the diagnostic biomarker is actually a multiple marker test.
     
    SOC, Nielk and heapsreal like this.
  3. xchocoholic

    xchocoholic Senior Member

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    If you google cfs leaky gut, cfs gluten, cfs lyme, cfs candida, cfs mold, etc etc, you'll find these subgroups have been around
    for a long time. I found it in 2005 when I first logged onto the web and started researching my cfs but I don't
    know how long the info has been available to medical professionals.

    I'm seeing that some pwcs heal via treating their other dx but some don't. Genes, environment, finances, etc can
    be contributing factors for why some don't heal, but also the fact that these root causes haven't been fully researched plays a role. From what I've seen even celiacs, ie gut damage, aren't tested for nutritional deficiencies, parasites, bad bacteria, etc.

    The only
    reason I started reasearching cfs, leaky gut, etc is that my GP explained food intolerances to me and gave me a handout
    on how these can cause a multitude of symptoms. It was called the leap program and she'd been using it for
    years on other patients so she knew it could help. I didn't hear about it until I'd seen a gastroenterologist
    for months who was clueless and I couldn't stop losing weight. I was a size 2 by then and everything
    I ate was going right thru me.

    That wasn't until 15 1/2 years after becoming disabled with cfs.
    Granted my cfs specialist had recommended the elimination diet in 1992 but I didn't see any difference
    so I gave up on that. I'd already spent $2500 on a naturopath who used a machine to tell him what foods
    I was sensitive to and that didn't work so I was leary of the food angle. Duh ! I really missed an opportunity
    there.

    For me, and many others, the puzzle peice missing at that time was to eliminate gluten, not just wheat. My GP made that
    same mistake in 2005. That info was on the web thanks to patients.

    I see an integrative doctor and would love to know what that group has found. They look for root causes.
    Based on my experience Medicare should have a great data base on this. That could save time
    and money on determining subsets.

    Tc .. X
     
  4. Nielk

    Nielk

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    On September 10th, the CDC will have a conference call with Drs. Unger and Lipkin. http://forums.phoenixrising.me/inde...erence-call-including-unger-and-lipkin.24743/

    We can e-mail in our questions in advance. Maybe we can ask about this?
     
    atoska and SOC like this.
  5. Nielk

    Nielk

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    I'm confused when I see Lyme/CFS, since Lyme and CFS have many symptoms in common, how does one know that they have both? The same with DES and others.

    @X - Does Medicare cover integrative doctors?
     
  6. xchocoholic

    xchocoholic Senior Member

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    Some integrative docs take medicare. Mine did
    at first but isn't now. All of my integrative tests
    have been covered. cdsas, saliva, etc.

    I don't know how llmds distinguish lyme from cfs.
    I'm not sure yet how my doc is looking at my cfs
    dx since I'm positive for so many other illnesses
    that could explain my fatigu etc. imho my pots
    could be responsible for my cfs fatigue brain fog, etc
    since i feel healthy supine most of the time and only
    feel sick when I'm upright. My pots could be from
    multiple probable permanent problems - heart, lungs, brain damage ...
     
    Nielk likes this.
  7. Sparrow

    Sparrow Senior Member

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    It was done through Klimas's lab, and I'm pretty certain it was a function test. There's plenty wrong with me to go around, though. ;)
     
  8. Sea

    Sea Senior Member

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    I'll have to add that to my list of questions for them next time I give them some of my blood.
     
    heapsreal likes this.
  9. SOC

    SOC Moderator and Senior Member

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    Yeah, they do both the number and function tests there. So you and I are among the patients without NK cell dysfunction. I wonder how many of us there are. Did you get CD8 (cytotoxic T-cells) numbers in your test? Are yours low, too? Or are you your own kind of special? ;)
     
  10. Nielk

    Nielk

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    My natural killer cell function tested by Dr. Enlander (through Quest Diagnostics) is low: 3 ref range 8-170
     
  11. Ember

    Ember Senior Member

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    Don't you consider mycoplasma pneumonia to be a subset of pneumonia? According to the CDC, it's the leading cause of pneumonia in school-age children and young adults. Yet the CDC lists it separately, MP being distinct from other forms of pneumonia. ME too should be listed separately from other forms of CFS.
     
  12. Nielk

    Nielk

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    Maybe it should. The truth is that it is all very confusing. We are all ill - at different levels of severity. We all want to feel better/to find proper treatments. The more I delve into this and look at everything that is out there, the more confused I get.
    Patients from the outbreaks feel that the disease is theirs and we have hijacked it from them. The ME purists think that the CFS "lobby" hijacked their disease. No one wants chronic fatigue - I am pretty sure about that.
    What confuses me about finding subsets is that I always thought that this was a complex multi-system disease. It involves the autonomic, immune and neurological systems. Whenever there is a disease that affects multi systems like Lupus, there are going to be so many different manifestations of the disease. This does not mean that it is different, separate diseases. It just means that it can look different in a variety of patients.

    One patient might have more neurological involvement whereas another's immune system can be shot. It is still the same illness.
     
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  13. Ember

    Ember Senior Member

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    The subsets of ME have yet to be studied. Here's what the ICC suggests:
     
    Nielk likes this.
  14. taniaaust1

    taniaaust1 Senior Member

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    Id like to point out that many illnesses dont have a unique one for diagnosis and hence they are diagnosed using a set group of markers in which people may need 3-4 different things showing up on test results. Why couldnt it be the same for us.
     
    Nielk likes this.
  15. taniaaust1

    taniaaust1 Senior Member

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    That's thou further grouping down of those who actually are broken away from the "CFS" group, the ME people. It would be no good to break down a very mixed group of CFS patients who may not even have ME in that way.
     
  16. Mij

    Mij Senior Member

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    This is true. Also, the length of time a patient has been ill is important too, different body system abnormalities become more apparent or change over time. I did not have obvious cognitive problems for the first 12yrs, no insomnia issues, PENE was nothing back then compared to how it affects me now.
     
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