1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

Cause of Death among Patients with Chronic Fatigue Syndrome

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

  1. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    5
    Hope this hasn't already been posted elsewhere.

    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."
  2. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    Also

    Apparently we also die, on average, 25 years earlier than the healthy. Can't remember where I read that stat but I think I have read it in several places. All of this is quite sobering - and keeps begging the question of WHY the CDC and the UK health care idiots don't "get it" - I'm heading backwards to my conspireacy theory that they don't want anyone to "get it" since the public would find out what viruses, pathogens, etc. were released by the Government(s) and have caused CFIDS/ME, cancers, and other diseases.

    Just wait. Soon my theory will be validated - and I know that many of you guys also can't help but think the same thing. Only real conclusion you can draw when money and incompetence just don't explain all that has gone on for three plus decades.
  3. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

    Messages:
    337
    Likes:
    0
    Incompetance and indifference certainly are excellent explanations for some things that are downright shocking. Ah, if you only knew how incompetant our governance is today, but you dont want to hear my litany (which is not without its thoughtcrimes).

    Besides, CFS is probably identical to the older entity neurasthenia.
  4. Kathi

    Kathi Senior Member

    Messages:
    104
    Likes:
    2
    Pittsburgh,PA
    The Fibro and Fatigue Center has helped my heart failure along with their protcol and T3 medication. A heart attack caused by their facility and the whole apex of my heart is akinetic now. Dr. Cheney tells me it will hasten my heart failure and I will die early.
  5. Kathi

    Kathi Senior Member

    Messages:
    104
    Likes:
    2
    Pittsburgh,PA
    The stem cell transplant could rebuild my heart.It has been tested in the US and works. It could help the CFS and heart damage, according to Cheney. I would get a two for one deal in the process. (I always like a sale!! )But the cost is at the minimum $25,000.00. It could even be more, I am not sure what it will be when I am ready. I think Dr. Teitelbuam should cover it, but he won't own up to anything. ( smile) I am not wealthy, as most of us aren't.
    Going to Dr. Cheney was a necessiity because of what happened. Fotunately he has been so wonderful in validating what happended to me.What doctor would be so courageous to step out and say this is what happened????
  6. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    Cancer count: Have you had/do you have cancer and what type?

    I know this is a terrible question to ask but, I am rather curious what types of cancers we CFIDS/ME people are getting. I am now facing down my possible first-round of cancer and am curious what others have or have had.

    My husband's friend, who has had CFIDS for 20 years and is now about 55 years old, has had two bouts of Lympho Leukemia.His liver is also badly damaged (they don't know why, he's not a drinker, etc) and now he is again dealing with the Leukemia. I have read that his type of cancer is not unusual in CFIDS/ME, in fact, more commonly seen in CFIDS/ME than in the normal population.

    I have a theory that CFIDS/ME peope start getting cancers around the 15 year mark of illness onset. Only my own odd theory but I wonder if the numbers lay down along that line. I know my immune system was super UP-regulated for several years and then it burned itself out and now I get sick from a small trip to the supermakret. I get horrible skin infections - with surgery for hang nails, cat scratches, etc- and have a strong feeling that without that immune system my time for cancer has come. So I will see very soon in the next two weeks IF I start on the Cancer road due to CFIDS and my now loss of immune system.

    Anyway - Comments on cancer and types of cancer that CFIDS/ME people have had or have please? Thanks.
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    186
    Clay, Alabama
    Forgot arrogance and sexism.

    Tina
  8. Martlet

    Martlet Senior Member

    Messages:
    1,837
    Likes:
    3
    Near St Louis, MO
    Kathi, I am so sorry you are going through all this. I had tears in my eyes as I read your posts.

    Muffin - It has been well over 17 years for me, and I think I am still up-regulating.
  9. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    5
    From the study in the blog I posted above: (Sorry, muffin, it doesn't answer your question, but one thing to remember is that the murine virus that started this XMRV excitement is closely related to one that causes leukemia in mice.) If decreased immunity leads to the development of cancer, then it could lead to the development of almost ANY cancer.

    http://www.name-us.org/ResearchPage...acts/JasonArticles/Jason2005Mortalityfull.pdf (published in 2005, this study alone should have generated a whole lot more research)

    US Deaths from cancer on average: age 72
    W/CFS: age 48

    Death from suicide on average: age 49
    W/CFS: age 37

    Death from heart failure on average: age 83
    W/CFS: age 59

    "If one examines national rates of death for these
    conditions, the ages of death for these three conditions among the patients
    with CFS are considerable earlier. The median age of death for cancer in
    the United States is 72 (Reis et al., 2003, versus an average age of 47.8 for
    the CFS sample), the average age of death for suicide in the United States is
    48 (Centers for Disease Control, 2003, versus an average age of 39.3 for the
    CFS sample), and the average age of heart failure is 83.1 (CDC, 2003, versus
    an average age of 58.7 years for the CFS sample). What this suggests is that
    those from this memorial list who did die of cancer, suicide, and heart failure
    were considerable younger than what would have been expected from the
    general population, which means that CFS might have increased the risk of
    death for at least this sample."
  10. Lucie

    Lucie

    Messages:
    50
    Likes:
    0
    U.S. Southwest
    Kathi, no. You cannot die early. There must be a way. The money has to be found and Dr. Cheney must/can help you. Your soul is too beautiful. (I know you from other groups, also.) I send my energy, my prayers, my hope. Do not give up!

    You contribute loveliness every day of your life.


    :hug::hug::hug:

    Lucie
  11. Kathi

    Kathi Senior Member

    Messages:
    104
    Likes:
    2
    Pittsburgh,PA
    Martlet, thank-you. Kind words help make me stronger and more determined that no one will go through what I went through. It was truly an ordeal. Heart failure is not something anyone needs to go through along with this illness.If it was an honest mistake, then own up to the mistake. Being called a malingerer when I was a few days away from the heart attack was the worst experience. Dr.Teitelbaum and Dr. Peirotti have some explaining to do to me and this and other forums . Dangerous protocol is no excuse at any cost!!! Telling me that Dr. John Lowe uses T3 therapy with fibro patients, when I didn't have fibro, doesn't cut it.

    God never lets anything happen in your life that doesn't pass by His eyes first. If some good can come out of what I have been through, then let me make that happen. If there was a purpose to allowing my catastrophe, then so be it if I can help another person. My passion is not to let one other person suffer like I did. I am thankful that this forum has embraced my words in the spirit they were meant. That honors me for pursuing on with what happened.
  12. Kathi

    Kathi Senior Member

    Messages:
    104
    Likes:
    2
    Pittsburgh,PA
    Lucie, the way your heart just touched me was so beautiful. No one knows or understands what words can do for your soul and spirit. Your kind and tender words touched my inner most soul with love. Thank-you
  13. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    Official Cause of Death

    kelly posted this to co-cure today

    Official Cause of Death


    *Official Cause of Death *

    A question recently hit my inbox about what the official cause of death would be listed as on a death certificate of a person who died of cancer. As I don't deal much with that end (pun not intended) of the health care spectrum, I did a bit of digging and found out that writing the "cause of death" statement is surprisingly complex and yet also a thing of simple beauty. Ok, so I'm a bit morbid.

    A typical cause of death statement might read:

    *Acute Myocardial Infarct *

    Now, if you aren't an MD or a nurse, that might look like a load of gibberish, but really it just says "heart attack". Simple, right? er... not quite as simple as that. Actual cause of death statements are written in two parts. The purpose of these statements is to allow tracking bodies to develop statistics on diseases and processes that kill people, *and the things that put us at greater risk for these conditions*. So if a coroner or MD writing a death certificate has more information (ie from medical history
    or an autopsy), they are going to fill this section in with as much data as possible.

    *Part I*

    The purpose of part 1 is to determine the series of medical events that lead up to the death, in reverse order, starting from the most recent condition and working backwards to the oldest relevant condition that lead directly to the death. So that very basic heart attack up there would become something more like heart attack due to hardening of the arteries that feed the heart,
    or in medical jargon:

    *Acute myocardial infarct* due to or as a consequence of *Athrosclerotic coronary artery disease*

    As another example, if you had someone die of a pneumonia because they had AIDS, their cause of death statement would look like:

    *Klebsiella Pneumonia* due to or as a consequence of *Acquired Immune Difficiency Syndrome* due to or as a consequence of *Human Immunodeficiency Virus infection*

    If there isn't a lot of data on what lead up to the death, or if the person was terminally ill from a known disease but there isn't a way to determine what complication of that terminal disease exactly killed the patient, you can sort of guess or just leave it off. As below:

    *Acute myocardial Infarct* Due to or as a consequence of *Probable Atherosclerotic coronary artery disease*

    Or simply: *Adenocarcinoma of the prostate*

    *Part II*

    Part II is to list risk factors that lead to the sequence of events that lead to the death. These can include other diagnoses, like high blood pressure (hypertension) or diabetes (diabetes mellitus type I or type II), or behaviors, like alcohol abuse, IV drug abuse, etc..

    *Do's and Don'ts*

    *Don't report signs or symptoms as the cause of death*

    So a person cannot be said to have died of a cough, fever, or elevated blood alcohol level. They can die of pneumonia (that caused the cough), or a specific infection (that caused the fever), or alcohol toxicity (with the high blood alcohol level would diagnose, but the blood alcohol level itself is a test, not a diagnosis).

    *Don't report mechanistic causes of death*
    <http://nursewriter.com/uploaded_images/vtach-718572.gif>
    Mechanistic causes of death are the physical process that stopped or failed due to disease or trauma, rather than the disease or trauma itself. As in cardiac arrest caused by a heart attack, or respiratory arrest caused by pneumonia.

    *Do be specific and exact*

    Don't oversimplify or under-report.

    For instance, a doctor wouldn't write that high blood pressure killed anybody. High blood pressure may have lead to stroke that killed someone, or it could have lead to hardening of the arteries and a heart attack.

    It's better to include too much information rather than too little.
    * *

    *Why is cause of death important?*

    Cause of death statements also allow us to track which diseases and problems are killing us, and thereby allow us to work harder on cures, treatments, and solutions to those same diseases and problems. Keeping mortality and morbidity statistics is one of the best ways to start tracking the impact of disease and death. (This is one of the CDC's jobs.)

    Of course, the cost of disease and death can't just be measured in death. Quality of life, healthcare costs, the costs to survivors, and other factors must be weighed as well.


    ***
  14. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    Interesting. Thanks for posting. Shame I can't dictate somehow that my cause of death is from CFIDS (if I die from a disease and not an accident). I think either cancer(s) and/or heart disease (both parents) will be the cause of my death unless I do something stupid while driving. But I doubt CFIDS will be written down as the cause and that is a true shame as those numbers need to be recorded and tracked.
  15. sproggle

    sproggle Jan

    Messages:
    232
    Likes:
    30
    Teesside, England UK
    Early death

    Not sure if this has been posted before. But I have heard it said on several occaisions that people with ME are known to die on average 25 years younger than the general population yet never found the research behind it.

    I stumbled across this on youtube where Annette Peterson mentions it

    http://www.youtube.com/watch?v=bNEiKfYvPSE&feature=PlayList&p=6FF9EE5807C67C25&index=0&playnext=1

    25 seconds in:

    "..Dr Jasons group took a look at 100 patients that had past away and they knew that they had ME prior to death and of those patients those patients died of the same kinds of illnesses as the general poulation heart disease, cancer, suicide was a higher rate but one of the findings in his paper and no one has come back to prove it or disprove it. Those individuals died an average of 25 years younger than others in the population (normal population)."

    So I searched for the article in question and found this on name-us.org:

    http://www.name-us.org/ResearchPages/ResJason.htm


    It's quite shocking that no other studies have been done to either prove or disprove it. It's a pretty stark finding and this research is years old :confused:

    Hmph :worried:

    I just hope this sort of information is being stored somewhere so that the truth will come out...

    Jan xx
  16. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    The study look at the memorial list for a CFS group, I think. It really should have been followed up on, by the CDC or NHS.
  17. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    752
    Hi, all.

    This is kind of a morbid topic, but for those who might be interested, one of the best proven biochemical features of CFS is oxidative stress. Oxidative stress has for a long time now been implicated in theories of ageing. Recently I got a copy of a new book by Wulf Droge, entitled "Avoiding the First Cause of Death." Professor Droge was at the University of Heidelberg, Germany, for quite a few years, and now lives in Montreal, I presume retired. He was the first person to publish a paper that noted that glutathione is depleted in CFS. He did a lot of research on oxidative stress, which occurs when glutathione is depleted.

    The new book associates oxidative stress with an inhibition of the ability of our cells to "take out the trash," including worn-out mitochondria and proteins. He argues that ageing results from the buildup of junk in the cells that would have been removed earlier in the person's life, when there was less damage from oxidative stress and the autophagy ("self-eating") mechanism is more efficient. This failure of autophagy is what limits a person's lifetime, according to his theory, which is supported by quite a bit of research, which he cites.

    If Professor Droge is right about this, this mechanism may be responsible for the reported shorter lifetimes of PWCs. Though Professor Droge does not go into this in detail in the book, it's likely that both heart disease and cancer are promoted by oxidative stress. Certainly oxidative stress is involved in the process of atherosclerosis. It also promotes mutations of the DNA, which can lead to cancer.

    What can be done about this? Well, I think that the oxidative stress has to be decreased, and the way to do that is to raise glutathione back up, and the way to do that, according to the GD--MCB hypothesis and the treatment study based on it, is to lift the partial methylation cycle block. That is the purpose of the Simplified Treatment Approach, described elsewhere in this forum.

    Best regards,

    Rich
  18. kat0465

    kat0465 Senior Member

    Messages:
    230
    Likes:
    2
    Texas
    early death

    It's Amazing to me how all these years, when all These Dr's are denying that this disease even exists.
    but we find credible data that says were DYING 25 years earlier than the general population!!

    Wheat the heck do they think were dying from?? if we don't have a legitimate disease. this just proves theres been so much cover up on every level,
    I wonder if one day the CDC will be in court, because thier being sued!!
    Geez, it just keeps getting worse.:Retro mad:
  19. Hope123

    Hope123 Senior Member

    Messages:
    1,142
    Likes:
    539
    Dr. Jason did what he could with the data he had but the study has some serious method flaws which he talks about in the paper. Because the data are off of a list of deaths submitted by friends/ family and no medical records or medical autopsies were done in most cases:

    1. The cases of CFS/ME are NOT confirmed
    2. Causes of death are not confirmed except for suicide perhaps
    3. Having been involved with death certificates, "heart failure" is often filled in as cause of death when cause is unknown because no autopsy was done; doctors cannot put in "unknown" as cause of death in the US; since practically all deaths involve heart failure this is often used and accepted by state governemnts. Certainly, these folks could truly have heart failure but we don't know for sure which ones did and which ones didn't just based on the list.


    Dr. Jason does NOT say that ME/CFS patients die 25 years earlier than the general population. What he said is: "The mean age of those who died from cancer and suicide was 47.8 and 39.3 years, respectively, which is considerably younger than those who died from cancer and suicide in the general population." This is different. The way the study is set up he could not answer the first question - you would need a much larger study following patients who died and did not die. I think what the paper says gets mangled a lot which is why reading the full-text document is important for those who can. I agree that this is an important issue which needs to be studied.
  20. kurt

    kurt Senior Member

    Messages:
    1,132
    Likes:
    176
    USA.Earth
    Hi Rich,

    I have some questions for you.

    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.

    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.

    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.

    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.

    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. 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?

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

See more popular forum discussions.

Share This Page