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Cause of Death among Patients with Chronic Fatigue Syndrome

Discussion in 'Latest ME/CFS Research' started by oerganix, Jan 11, 2010.

  1. ixchelkali

    ixchelkali Senior Member

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    On the up side, now maybe I can quit worrying about whether my nest egg will last until old age, or if I should start working on yummy recipes for kitty tuna. :Retro wink:

    RichVank, Dr David Bells book Cellular Hypoxia and Neuro-Immune Fatigue and Martin Palls book Explaining 'Unexplained Illnesses': Disease Paradigm for Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, Fibromyalgia, Post-Traumatic Stress Disorder, and Gulf War Syndrome both deal with the role of oxidative stress in ME/CFS. You might find them interesting. I did.
     
  2. aepalisades

    aepalisades

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    Muffin, I came down with cancer in 1996- Hodgkin's Disease ( a lymphatic cancer). Right after chemo ended (in MArch 1997) I started to heal. I came down with the flu (or flu like illness) in the summer. It has been downhill ever since. So I suspect they are linked. I did some looking into chronic fatigue and Hodgkin's disease patients and there are several University studies indicating HD patients who have been successfully treated for cancer have long term fatigue issue (which goes away when (if) the cancer reappears and is treated again, but fatigue returns when treatment ends).....hmmm maybe they are just killing the immune system. I wrote to WPI to ask if they were checking XMRV for a link to HD and they said they were checking ALL cancer for XMRV, but specifically those that are usually link to the young (like HD).

    I hope this is helpful. Hodgkin's disease tends to occur in two age group around age 20-30 and then again around age 50-60. I hope they figure this out soon, I already had HD when I was in the first age bracket, and that second age bracket isn't nearly as far away as it used to look............
     
  3. Carrigon

    Carrigon Senior Member

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    I was told in 2003 that I have a problem with the left ventricle of my heart. I often get heart symptoms, pain, irregular heartbeat. Here's the interesting thing, went for a test last year, they claimed they couldn't find the problem on it. Therefore, I must be miraculously cured of the heart problem. Yeah, right. Well, the pain and irregular heartbeat continues and the idiot doctors are now not taking it seriously because the last test failed to show it. And I said, the test didn't fail to show it, they read it wrong. And I really believe that. The tech was a complete moron. She didn't know what she was doing.

    After nineteen years of this disease, I think I'll end up dying of the heart thing. Maybe not this year, but eventually.
     
  4. Martlet

    Martlet Senior Member

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    Carrigon - What tests did they do?
     
  5. Robin

    Robin Guest

    I'm sorry to hear about your Hodgkin's but I'm glad that you are in remission; though having fatigue issues on top of that has got to be horribly frustrating. My uncle is in remission from mantle cell lymphoma and when I was researching that I learned that while many cancers are decreasing in prevalence, lymphoma is increasing! I do hope there is more research and that you have some answers before you hit that second bracket...
     
  6. Carrigon

    Carrigon Senior Member

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    The one with the padle. Too brainfogged today to remember the name of it. All I know is, it showed up the first time, didn't show the last time. Or, like I said, it wasn't read right.
     
  7. richvank

    richvank Senior Member

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    To Kurt re: Oxidative Stress and the GD--MCB hypothesis

    Hi Rich,

    I have some questions for you.

    ***Hi, Kurt.

    ***Sorry to be so slow getting back to you. Ive just been swamped with emails, and am pretty far behind in trying to answer them all.

    Clearly oxidative stress is an important part of the CFS pathology. But would reducing oxidative stress alone resolve enough of the disease to extend life? What about the other co-morbid CFS pathologies? Shouldn't those also be treated, particularly those that make a major contribution to the oxidative stress, such as the many documented co-infections, as well as HPA malfunction, environmental toxins, even life stress and anxiety, all of which can deplete GSH.

    ***If the partial methylation cycle block is lifted and glutathione is thus allowed to come back up to normal, some of these issues will automatically be taken care of, according to my hypothesis, and according to some of the clinical evidence so far. Both the immune system and the detox system begin operating more normally when the partial methylation cycle block and glutathione are normalized, and they are able to take care of some of the infections and toxins. However, it appears that they may need some help when certain infections or too large a body burden of toxins are present. For examples, mold illness and Lyme disease appear to need to be treated specifically, because both can hold down glutathione. Too high levels of heavy metal toxins can block the enzymes in the methylation cycle and related pathways, so that they cannot recover without special detox efforts. If KPU is present, there will need to be supplementation of things like B6 and zinc, which are needed as cofactors, but are depleted in KPU. And yes, if the person continues under high stress, that can also impede recovery, because the elevated epinephrine can auto-oxidize to adrenochrome, and that can deplete glutathione. According to my hypothesis, the HPA axis will normalize when glutathione comes up to normal, and one person has reported this.

    Next, have you considered ALL of the genetic problems found in PWC, which include stress and hormone management system deletions, immune system problems (RNasL and probably others), as well as problems in the mitochondrial system, the WBCs, along with the methylation and detox system problems? I would think a full protocol should address all these factors.

    ***The entire genome has not been studied to measure frequencies of all the possible polymorphisms in CFS. However, it isnt clear that this needs to be done in order to have effective treatment. In our clinical study on 30 women, which can be read about here: http://aboutmecfs.org/Trt/TrtMethylStudy09.pdf

    we ignored genomics and treated them all the same, using the Simplified Treatment Approach. At least two-thirds of them showed improvement, and on the average, the improvement was statistically significant for the entire group. We found that having the main CBS polymorphism did make a difference in how fast they recovered, but even those who were homozygous for this SNP showed improvement over the 6-month period.

    I do find this idea fascinating that MB-GD contributes to premature aging. The idea that we are in some type of accelerated aging process makes some sense. Although it is a strange type of aging, almost like aging stops and at the same time we deteriorate. I can pass for 10-20 years younger than my age, so some aging process is actually not working, and I know other PWC like this (there has been a thread on this topic), but inside I feel 90 years old.

    ***Yes, that is strange. I wonder if lower exposure to the sun can be involved, at least in some cases. Sun exposure does take its toll on the skin, and on how old a person appears to be. But there is probably more to it than that.

    Next question, aside from methylation/glutathione support, do you think we should we could benefit from standard life extension therapies as CFS treatments? Such as Gary Gordon's protocols? I am thinking in particular of his daily use of EDTA, among other things.

    ***I think EDTA can certainly help to take out some of the toxic metals. Its part of Amy Yaskos protocol for detoxing aluminum, for example. I guess I would suggest that fixing the partial methylation cycle block and raising glutathione are the initial things that should be done. After these are restored, other things could certainly be considered. But they are so foundational to the overall metabolism that normalizing them needs to have high priority, I think. I can link essentially all the features of CFS to these basic metabolic abnormalities by specific and detailed biochemical mechanisms.

    A 'systems biology' perspective, which I think is the most rational medical paradigm for CFS, suggests that we look at relationships between co-morbid pathologies.

    ***I agree. And some of the cases Ive studied have some very unusual comorbidities. They do have the symptoms of CFS, but other things have led to it, or have developed later because of immune dysfunction or detox dysfunction, for example. Just to give a partial list of things that have come up as comorbidities in cases Ive consulted on, here are some things I have found: PANDAS in an adult, the Lorenzos oil disease, Wilsons disease, cyanide toxicity, autonomous multinodular goiter, a variety of autoimmune diseases, mold illness, Lyme disease and its coinfections, a very tenacious fungal infection in one of the sinuses, genetic abnormality in vitamin B2 utilization, major exposures to toxins, traumatic brain injury, traumatic spinal injury, vitiligo, drug reactions, congenital heart disease, major diabetes insipidus, major gut problems involving serious malabsorption, and alcoholic liver disease.

    Methylation blocks are the ultimate systems failure, affecting so many processes. I know you have a lot of expertise there. So a question, isn't this always only a partial block? Because I assume if methylation were really blocked we would be dead. So would not 'sluggish methylation' or 'poor methylation' be more appropriate terminology?

    ***Thats right. We couldnt live with zero methylation capacity or zero glutathione. These things are vital. I try to remember to write and say partial methylation cycle block, but I dont always remember. If I were naming the hypothesis today, I would include partial in it, but the cat is already out of the bag at this point.

    Also, glutathione depletion would seem to have many causes, more co-factors than poor methylation alone.

    ***Thats right. You may not have understood the first part of my hypothesis. In the hypothesis, the initial causes of the glutathione depletion can be a wide variety of physical, chemical, biological and psychological/emotional stressors, the combination being different for each case. But when glutathione goes low enough in a person with the predisposing genomics, a partial block occurs in the methylation cycle because B12 loses its protection by glutathione. The partial block in the methylation cycle then"locks" in the glutathione depletion by a vicious circle mechanism, and CFS becomes chronic. So the partial methylation cycle block is usually not the first cause of the glutathione depletion, but it stabilizes it and prevents glutathione from coming back up.

    I guess what I am saying is that your theory does make sense here, considering the early mortality of PWC who succomb to cancer and heart disease, but I would like to see that placed in the larger context of the entire CFS pathology. And I want to know how to integrate your approach with everything else we know about CFS now, how to construct a 'systems biology' approach to CFS treatment.

    ***Well, I actually did that three years ago. I invite you to take a close look at my 2007 IACFS poster paper, which can be found on Corts website:

    http://aboutmecfs.org/Rsrch/GSHMethylation.aspx

    ***Thanks for your interest.

    ***Best regards,

    ***Rich
     
  8. kurt

    kurt Senior Member

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    Thanks Rich! This does help. So perhaps a more accurate title for your hypothesis might be 'multifactorial glutathione depletion overloading a genetically weak methylation system producing a self-perpetuating partial methylation cycle block'. I guess you are right, I did not fully appreciate the GD part of GD-MB. And thanks for the links to read.
     
  9. richvank

    richvank Senior Member

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    Hi, Kurt.

    You're welcome! And I'd say you've really captured the essence of the hypothesis now. I wonder how fast I could say that new title! :)-)

    Best regards,

    Rich
     
  10. bullybeef

    bullybeef Senior Member

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  11. kurt

    kurt Senior Member

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    Thanks for posting that, now that leads me to wonder a little whether CFS was really the primary problem in those deaths. Given that the CDC has identified that CFS is like the quality of life in the last few months of cancer or heart disease, how can we be certain that these were really CFS cases and not just some lingering cancer and heart disease cases? And also, even the suicide numbers are curious given the fact that MDD (depression) can also be misdiagnosed as CFS.

    If the deaths were from renal system failure, or mitochoncrial failure, something closer to the primary pathologies of CFS, then this might be more straightforward. Really I don't know what to make of those numbers. Also, the statistical average is simply a 'within group average' and not a population average, so this is also a bit misleading.
     
  12. mtnbibliophile

    mtnbibliophile

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    Hi Muffin - I know you posted a while ago, but in case you haven't come across it yet, there was a study done in 2012 on just this issue. You can find the abstract at http://www.ncbi.nlm.nih.gov/pubmed/22648858. The rate of CFS among cancer patients and controls was the same - BUT "CFS was associated with an increased risk of non-Hodgkin lymphoma (NHL) (OR = 1.29, 95% confidence interval [CI] = 1.16-1.43, P = 1.7 × 10(-6) ). Among NHL subtypes, CFS was associated with diffuse large B cell lymphoma (OR = 1.34, 95% CI = 1.12-1.61), marginal zone lymphoma (OR = 1.88, 95% CI = 1.38-2.57), and B cell NHL not otherwise specified (OR = 1.51, 95% CI = 1.03-2.23). CFS associations with NHL overall and NHL subtypes remained elevated after excluding patients with medical conditions related to CFS or NHL, such as autoimmune conditions. CFS was also associated, although not after multiple comparison adjustment, with cancers of the pancreas (OR = 1.25, 95% CI = 1.07-1.47), kidney (OR = 1.27, 95% CI = 1.07-1.49), breast (OR = 0.85, 95% CI = 0.74-0.98), and oral cavity and pharynx (OR = 0.70, 95% CI = 0.49-1.00)." The article appears in Cancer, the journal of the American Cancer Society.
     
  13. Tired of being sick

    Tired of being sick Senior Member

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    Heart failure will be the one that sends me packing..

    When I just do something of minimum physical activeness, like take a shower,my heart rate has been as high as 166bpm!

    On days that I shower my pulse will stay above 100bpm for the rest of the day

    My blood pressure and pulse is normal ,only when I lie down..

    So this also is a reason why I lay down 90% of the time

    I just found my pulse condition out a week ago,so the 90% of lying down was subconscious
     
  14. Daffodil

    Daffodil Senior Member

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    most common cause of death= heart failure. second = cancer. third = suicide.

    I think lymphoma is the most common one for us.

    I will also die with heart attack. have a lot of chest pain.

    severe inflammation for years has caused some organ damage...fatty liver...cysts all over thyroid....probably a bunch of other things I have yet to be tested for.

    i think some forms of cancer treatments kill B cells? maybe that's why we go into a temporary remission
     
  15. Valentijn

    Valentijn Activity Level: 3

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    My heart rate does the same when showering, but a shower stool has been a big help. It also helps if I prop one leg up on the edge of the bathtub.

    And lots of resting in the process of getting the shower started: rest, go upstairs, rest until heart rate is normal and I "feel" recovered, move stool and washing implements into range, rest, shower - resting with my arms down when heartrate gets too fast, dry off a bit or rest immediately if heart rate is too high, brush hair, rest, and go back downstairs.
     
    merylg, Iquitos, SDSue and 1 other person like this.
  16. xchocoholic

    xchocoholic Senior Member

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    Hi @Valentijn

    Your post made me laugh. I'd never thought about it but you summed up how I manage showers too. Only I take 2 glucose tablets prior also. I won't have enough energy without those. I take 2 after I'm dried off and dressed again too. Then I collapse. Lol.

    It's funny how we've adjusted to our bodies needs without consciously thinking about it.

    I really need to get a shower stool.

    Tc .. x
     
    merylg and Valentijn like this.
  17. Tired of being sick

    Tired of being sick Senior Member

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    If I waited for my heart to go below 100bpm It would take the entire day..

    My heart rate goes through the roof in seconds

    but takes an eternity to come back down
     
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Liver failure for me from all the meds or maybe the stuff from I herb. As long as it doesn't hurt.
     
    merylg likes this.
  19. Gingergrrl

    Gingergrrl Community Support Volunteer

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    Just discovered this thread and for me it will be some form of heart failure that kills me. I have the same problem w/the shower. My husband bought me a shower chair but now even that is too difficult so I just take a bath.
     
  20. rosie26

    rosie26 Senior Member

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    Heart failure, heart attack or something going wrong with the head from inflammation I get, I think for me.
     
    Last edited: Jun 27, 2014

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