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Why myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may kill you

Discussion in 'Latest ME/CFS Research' started by shannah, Jan 1, 2010.

  1. shannah

    shannah Senior Member

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    Neuro Endocrinol Lett. 2009 Dec 30;30(6). [Epub ahead of print]

    Why myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may kill you: disorders in the inflammatory and oxidative and nitrosative stress (IO&NS) pathways may explain cardiovascular disorders in ME/CFS.
    Maes M, Twisk FN.

    Maes Clinics, Antwerp, Belgium. crc.mh@telenet.be.

    There is evidence that disorders in inflammatory and oxidative and nitrosative (IO&NS) pathways and a lowered antioxidant status are important pathophysiological mechanisms underpinning myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). Important precipitating and perpetuating factors for ME/CFS are (amongst others) bacterial and viral infections; bacterial translocation due to an increased gut permeability; and psychological stress. Recently, Jason et al (2006) reported that the mean age of patients with myalgic encephalomyelitis/chronic fatigue syndrome dying from heart failure, i.e. 58.7 years, is significantly lower than the age of those dying from heart failure in the general US population, i.e. 83.1 years. These findings implicate that ME/CFS is a risk factor to cardio-vascular disorder. This review demonstrates that disorders in various IO&NS pathways provide explanations for the earlier mortality due to cardiovascular disorders in ME/CFS. These pathways are: a) chronic low grade inflammation with extended production of nuclear factor kappa B and COX-2 and increased levels of tumour necrosis factor alpha; b) increased O&NS with increased peroxide levels, and phospholipid oxidation including oxidative damage to phosphatidylinositol; c) decreased levels of specific antioxidants, i.e. coenzyme Q10, zinc and dehydroepiandrosterone-sulphate; d) bacterial translocation as a result of leaky gut; e) decreased omega-3 polyunsatutared fatty acids (PUFAs), and increased omega-6 PUFA and saturated fatty acid levels; and f) the presence of viral and bacterial infections and psychological stressors. The mechanisms whereby each of these factors may contribute towards cardio-vascular disorder in ME/CFS are discussed. ME/CFS is a multisystemic metabolic-inflammatory disorder. The aberrations in IO&NS pathways may increase the risk for cardiovascular disorders.

    PMID: 20038921 [PubMed - as supplied by publisher]

    http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=20038921
  2. Countrygirl

    Countrygirl Senior Member

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    Thanks Shannah

    That's very interesting, Shannah. A good find. :) Many thanks for posting it. I shall save the document, as it could prove very useful to give to my doc.

    Thanks.

    Best wishes,

    C.G.
  3. _Kim_

    _Kim_ Guest

    Thanks Shannah

    Now isn't that a title that gets your attention?? Maes and Twisk are not pulling any punches in getting the word out there about how serious this illness is.

    I wish that I could read the full text, but it looks like I'll have to wait a bit on that - my university only has access to NE Letters up to Vol 3, issue 3. This is issue 6.
  4. iofiel

    iofiel Guest

    Hmm. I thought I read somewhere that ME can lead to cardiac arrest.

    When I was younger, I was diagnosed with Chostochondritis. I wonder if this was an obscure symptom of M/E.

    I think it would be a relief for a lot of people if we could pinpoint when exactly it started... or at least it would for me...

    Thanks for the article :)
  5. _Kim_

    _Kim_ Guest

    iofiel, costochondritis is not specific to CFS. It's a common cause of chest pain and by it's name, doesn't specify why you have inflammed ribs/cartilage. It's kind of like any of the other -itis names. What does tendinitis, bursitis, arthritis tell us? Inflammation of an anatomical region. That's all.
  6. laura

    laura Senior Member

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    thanks

    Thanks for the info, very interesting. And important when trying to sort out what supplements to purchase...have to remember the heart!!!!

    Laura
  7. franktwisk

    franktwisk

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    I think is isn't available yet...

    Frank

    Two other studies aboit the seriousness of this illness:

    A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET)
    in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS):
    CBT/GET is not only ineffective and not evidence-based,
    but also potentially harmful for many patients with ME/CFS.

    Neuro Endocrinol Lett. 2009;30(3):284-99.
    Twisk FN, Maes M.
    summary: http://www.ncbi.nlm.nih.gov/pubmed/19855350
    full-text: http://node.nel.edu/?node_id=8918 (on request)

    Chronic fatigue syndrome: la bte noire of the Belgian health care system.
    Neuro Endocrinol Lett. 2009;30(3):300-11.
    Maes M, Twisk FN.
    summary: http://www.ncbi.nlm.nih.gov/pubmed/19855351
  8. _Kim_

    _Kim_ Guest

    Hi franktwisk

    A hearty welcome to the forums!!

    I appreciate the research you are doing and look forward to being able to read the full text of the latest paper when it is available.

    The other two publications have inspired quite a bit of discussion here.

    CBT/GET potentially harmful to ME/CFS patients
    has 15 pages of comments!

    CBT/GET Assessed in Belgium (la bte noire)

    Your work is certainly getting noticed here. What kind of responses have you received from the research community regarding your papers?

  9. Advocate

    Advocate Senior Member

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    I second that. We are honored.
  10. kat0465

    kat0465 Senior Member

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    ok, this scares the Bejesus outta me!! i have major heart symptoms with this crap. i just know one day thier gonna find me dead of a heart attack!!
    i've had holter monitors, ekg's chest xrays. but they always say ohh just a few blips hear & there nothing to worry about!on top of this i have MVP, so what do yuo do?? go to yet another cardio doc that dosent understand cfs and the heart problems we have? or just suffer.
    i'd like to know how many of us suffer with our hearts on here, is it pretty common?( sure seems that way )
    Kat
  11. Jenny

    Jenny Senior Member

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    Hi Frank

    Welcome and thanks for listening!

    Have you seen any evidence of a link between ME and subarachnoid brain haemorrhage? I suffered this a few years ago, and seem to have general inflammation throughout my body. I'm wondering if this inflammation might affect blood vessels in the brain.

    I was on guaifenisen at the time though, which is a blood thinner I believe.

    Jenny
  12. Chris

    Chris Senior Member

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    hearts and oxidation again

    Hi; going to the essay that began this thread, an interesting abstract that sounds to my medically uninstructed mind much like Cheneys argument in The Heart of the Matter (should be available at http://www.cfids-cab.org/MESA/Cheney.pdf , but my computer cannot find it...sorry); there is much there about the diastolic heart failure (wish he had said dysfunction) that characterizes CFS, and also about the NO/ONOO peroxidation theories of Martin Pall, which he incorporates into his account of what triggers that dysfunction. This was back in the days when Cheney was still using whey to raise glutathione levels to counter oxidation and also to lower viral loads by raising NK cell levels. He is still adding to the list of cardiac symptoms in his latest DVD, showing that most of us have foramen ovale patent, literally a hole in our hearts between the two atria.

    Since Cheneys heart talk, we have had Rich van Konynenburgs methylation protocol, also designed to raise glutathione levels, adding to Martin Palls listing of substances able to reduce peroxide levels and oxidative damage.

    More recently we have had Cheneys addition of Artesunate aimed at shifting the redox point to a level at which viruses cannot replicate, as described in his April 2009 DVD. More recently still he has stated that with the use of Artesunate, he has seen the diastolic dysfunction that characterises CFS reversed; I assume that if and when that happens, the danger of dying directly from heart failure is pretty distant.

    I am not quite clear just how this has been accomplishedhas the halting of viral replication initiated a shift in the redox point, allowing the bodys natural mechanisms to begin to return things towards normal, or does he think Artesunate has other means of shifting that point, so that virusus can no longer replicate? The visualized metaphor he offers in his April 2009 DVD is of a graph, with a curve that rises and falls steeply to and then from a point; on the left side, at the bottom of the curve, are the ashes of a burned out bonfire, and at the right side, at the other bottom point of the curve, are the piled up logs waiting to be consumed. At the midpoint peak is the production of maximal energy, the fire of life burning as it should, and inhibiting viral reproductionthe Promised Land of energy and joy. But how to get there....

    Given recent evidence that Artesunate has direct anti-viral and even anti-retroviral action, I wonder if it has been stopping viruses in their tracks, partly through an oxidative process involving heme iron, for which there is some evidence that I have posted or pointed to on the Artesunate thread, though other means seem also involved. I cannot remember where, but somewhere Cheney muses on the possibility of alternating a pro- with an anti-oxidative therapy, and states that something like that has been used in cancer therapy. Does anyone more knowledgeable than myself have any information on this?

    I have been taking Artesunate for a short while, and am beginning to think about trying a rhythm like that myselfsay taking 2 x 2 capsules of Artesunate on Mon and Wed, without any antioxidants (turn up that fire), and then turning on the antioxidants for Thurs-Sat and cooling the flames, then giving all systems a sabbatical rest on Sunday. Any comments on this would be more than welcome!
    Best wishes, Chris
  13. oerganix

    oerganix Senior Member

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    I also posted this under blogs/XMRV:

    http://digdeep1.wordpress.com/2010/...among-patients-with-chronic-fatigue-syndrome/

    Causes of Death among Patients with Chronic Fatigue Syndrome Leonard A. Jason, Karina Corradi, Sara Gress, Sarah Williams and Susan Torres-Harding DePaul University (2006). "The three most prevalent causes of death were heart failure, suicide, and cancer, which accounted for 59.6% of all deaths. The mean age of those who died from cancer and suicide was 47.8 and 39.3 years, respectively [and heart failure, 58.7], which is considerably younger than those who died from cancer and suicide in the general population. For each of these areas, there is supportive evidence that might help explain why heart failure, cancer, and suicide might be associated with deaths among people with CFS in this sample. The implications of these findings are discussed."
  14. Dolphin

    Dolphin Senior Member

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  15. franktwisk

    franktwisk

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    A delayed reaction...

    Thank You.


    Most were very positive.

    In the general interest I hope the review will be referred to by others.
  16. Frank

    Frank Senior Member

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    Welkom Frank ;)

    As you can see we're building a worldwilde community over here.

    I've read your website "Het Alternatief" with much interest in the past, but now this website is my first resource for research information :Retro smile: Anyway great research with Prof. Maes, continue on the same path.

    Frank (vanuit Belgi)
  17. Chris

    Chris Senior Member

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    our hearts and the cardios..

    Hi, Kat; I have the same kind of experience with cardiologists--and plan to fight back a bit; try to get impedance cardiography (aka Plethysmography) somewhere--it is the test used by Peckerman in the 2003 paper (available in the Research Library, under Natelson I think) upon which Cheney's "The Heart of the Matter" conversation (available on the web) was based--and Cheney develops this in his latest DVD. The gist is that we have very low heart output that drops really low when we stand up--that we all have a form of diastolic cardiomyopathy that most cardiologists just don't recognize.

    There is now a form of impedance cardiography developed in France being promoted by PureElement (website) and called Physioflow Enduro and I note has been picked up by a private clinic in Vancouver. You might try to find if it is available somewhere near you, if a hospital based impedance cardiography test is not available. Whether the results will convince a cardio I don't know-but I do plan to try!
    Best, Chris
  18. kat0465

    kat0465 Senior Member

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    thanks for the info Chris,
    i'll sure look at the info and talk to my Cfids doc about it. Shes very understanding, and will usually try anything i ask. since shes in the Big City of Houston, and
    knows tons of Dr's she might be able to direct me to a good cardio doc that knows a little about our unique situations with our hearts.
    im at the point where i've been sick for almost 2 decades, and im just sick to death of going to dr's and not getting anywere, all that time & money and nothing to show for it :(
    It's sad we have to live like this.
    Take care!
    Kat
  19. Jessrose21

    Jessrose21

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    Kat, I was experiencing a lot of heart symptoms: palpitations, feeling like my heart would stop for a moment, chest pain, shortness of breath, dizziness, fainting. I had a 48 hour holter monitor which showed nothing, as well as an ultrasound, which showed nothing. I wasn't diagnosed until I had a tilt-table test during which my heart rate decreased quickly upon fifteen minutes of standing. I was then diagnosed with bradycardia and neurocardiogenic syncope (slow heart rate, sort of like POTS) and was given a pacemaker. Now, I feel a little better and don't get as much chest pain. It's not a cure by any means, but I sure am glad to have it!
  20. kat0465

    kat0465 Senior Member

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    wow, that sounds a lot like what i go thru.it's just so wierd that i can feel that bad and have all that heart stuff goin on, and they don't find much at all.
    guess they dont know what thier looking for. i am probably headed down the same road as you, im sure i will need a pacemaker one day.
    I'm glad the pacemaker has made you feel a little better. every little bit helps:)
    Thanks
    Kat

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