Young man died of CFS, Coroner said myocarditis

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by phoenixrising2, Jun 17, 2006.

  1. phoenixrising2

    phoenixrising2 New Member

    A TRAGIC DEATH

    (This testimony was given to the CFSAC (The Chronic Fatigue Syndrome Advisory Committee of the U.S. Department of Health and Human Services) on Monday, September 12, 2005 from Mary Schweitzer Ph.D.)

    On July 4, 2005, sometime between 2:30 am when his mother kissed him good night, and 6:30 am when his father came downstairs, Casey Fero died in his sleep. His heart simply stopped. Casey Fero was 23.

    Casey was a charming, friendly kid with blue-green eyes. He was first diagnosed with CFS at the age of 9, then again at 15. He was plagued by headaches, cognitive difficulties, muscle weakness, and exhaustion. In addition to the symptoms of a serious illness, he had to endure doctors who did not "believe" he was "really" sick, and teachers who saw in him only a shirker. By the end of his short life, however, he was happy. He had just completed two years of community college and was looking forward to beginning courses at the University of Wisconsin. He had acquired a summer job. He had many friends, who came to his home for days after he slipped away to mourn the loss together. The family and Wisconsin CFS Association will honor Casey with a blood and tissue bank for CFS/M.E. victims.


    The flyer was posted to Co-Cure yesterday, and can be found at http://www.co-cure.org/flyer_WI.pdf . To contribute to the Casey Fero ME/CFS Tissue and Blood Bank go to <www.wicfs-me.org>]

    In his mother's words, "Casey had bull dog determination. In his mind he had overcome all illness and if he just worked harder he could do anything.... Interesting, how he died so well, with so much enthusiasm to live."

    Casey's mother, Pat Fero, President of the Wisconsin CFS Association testified before this Committee about a year and a half ago. Pat has had CFS since before Casey was born. She and Bruce sought diagnosis and treatment for Casey, but as he passed into adulthood, he no longer had a doctor of his own. Even at the University of Wisconsin, there were no doctors who "believed in" the disease or, for that matter, really believed Casey was sick. Casey carved his own therapy out of over-the-counter and mail-order supplements such as powdered whey protein and Co-Q-10.

    Seeing the supplements, the coroner originally told Pat that this would be their first "steroid" death. Even in death, the first response was that it could not be CFS, because CFS is not a serious disease.

    Last Thursday, September 8, Pat received the coroner's report. The University of Wisconsin forensic pathologist found that: Casey died of myocarditis that is, his heart was infected with disease. There was inflammation, and the tissue was full of viral infection. Casey also had old fibrosis, indicating that the viral infection was not of a new onset.** The pathologist was "shocked" at this finding.

    Casey Fero died of Chronic Fatigue Syndrome. Why?

    Specialists on NMH said they knew of no cases where someone died from that condition nor had there been reason to suspect carditis was involved in NMH.

    Using an ultra-sensitive type of electrocardiogram, Dr. A. Martin Lerner of Wayne State University has found evidence that EBV and cytomegaloviruses in CFS patients has caused heart damage. I do not know whether this research has been replicated, but under the circumstances, it takes on a new importance. There is evidence that HHV-6 can infect the heart. Other possible culprits include Lyme Disease, mycoplasma, and Chlamydia.

    In 2003, Arnold Peckerman, Benjamin Natelson and others published their research finding that most CFS patients suffer from cardiac abnormalities "Abnormal Impedance Cardiography Predicts Symptom Severity in Chronic Fatigue Syndrome," in The American Journal of the Medical Sciences 326:2 (2003): 55-60]. The cause was left to further studies, but Dr. Paul Cheney has suggested viral infection. Clearly this research could lead to an answer to Casey's death, but it has no federal funding.

    The harsh reality is that research on CFS, viruses, and cardiac abnormalities is under-funded, ignored, and at times outright dismissed by those charged with informing the public of the dangers of diseases.

    However, if you turn to the Myalgic Encephalomyelitis (M.E.) literature in Great Britain, there is evidence of deaths in both adults and teenagers from sudden heart stoppage. Ramsay wrote about such cases, and in correspondence with Dr. Malcolm Hooper I was informed that he, too, was aware of premature deaths from heart failure. Dr. Hooper has long been studying the hypothesis that M.E. is caused by an enterovirus (such as polio and coxsackie). There is no comparable research on enteroviruses in the United States (unless you count the sparse literature on post-polio syndrome).

    Is this the price we have paid because in 1988 we rejected, instead of embracing, the robust research programs and existing literature in the M.E. community? Had we built on these studies, instead of squandering our time on measures of "fatigue" and a plethora of studies of CFS as a "somaticizing" disorder, where might we be today? For the past twenty years, had we been looking at this as a disease rather than a psychological disorder, would we now know enough to have prevented Casey's death?

    And if we hadn't hidden what we already know from the public, would Casey have had a doctor of his own, perhaps even one that would have looked into the condition of his heart? Pat Fero came down with CFS before her son Casey was born. His entire life was lived under the shadow of this disease a shadow of widespread ignorance. Why? The pathologist was shocked to find heart damage. Why?

    What is the virus that the pathologists found? HHV-6? Mycoplasma? Anenterovirus? Cytomegalovirus? EBV? Something completely new? Why is there no money for researchers studying these very questions?

    We need the public to be told NOW that there is a serious disease out there, and that nearly a million people in the United States have it. They need to be told of the uncertainty about cause, prognosis, and cure. They need to be told what they should be tested for to rule out other diseases.

    And they need to know that patients die.

    Two months after Casey's tragic, untimely death, most primary care physicians know little more about the disease than they did on the day Casey was born. That is criminal. One year after this committee sent a list of suggestions (as is its task), to the Secretary of the DHHS, there has been no [effective] response. That is also criminal.

    What does it take to impart a sense of urgency to this task? Does it take the tragedy of a young man's senseless death?

    Hold Casey's memory high, like a banner. Take him to Congress, to the press, to the appropriate medical specialties. Let this be a turning point.

    Casey Fero died too young. Do not let his death be in vain.


  2. stagename

    stagename New Member

    bump.
    thank you for posting this.
    i knew we were more susceptible to stroke because of migraines, but i had no idea about this...

    is the enterovirus/polio connection possibly linked to childhood immunizations??
  3. sues1

    sues1 New Member

    Thank you for posting this. It has left so many emotions in me this moment that I can not find words to respond more.

    I think maybe we should also instruct our loved ones that something goes into our obitaries after we are gone....on CFIDS/FIBRO....the more we bring it to the public the more recognization we will get and assistance/research...





    Blessings.......Susan
  4. lenasvn

    lenasvn New Member

    Please, of those of you who have the energy, go to
    http://www.cfids-me.org/marys/nihprobs.html
    and read about that despite efforts by the U.S. Congress to bring federal health agencies in line with the public's concern about CFS/CFIDS, both the NIH and CDC continue to behave as if on-campus interests were all that mattered.

    At the end of the page they give advice on how to get attention in the matter.

  5. Cromwell

    Cromwell New Member

    I also understand that military medical people take this seriously and there is research going on regarding the number of military personnel who may have this dd. In particular their research is around vaccinations. One problem is that researchers have to be able to replicate the dd in animals and this is what causes the problem as there are apparently no animals who display CFS. My doctor said, however, that they used to call this post viral fatigue, a dd which many people recover from after a few weeks or months, however, he says it was changed then to CFS to describe the people who do not recover and for whom this dd gets worse.

    I do not know whether it is true, but I thought it was interesting in light of the tragic story.

    Anne C
  6. elliespad

    elliespad Member

    If they want to study an animal that displays DD, they should study the Shar Pei. It is virtually the only breed to suffer Amyloidosis, which can strike even young puppies and usually results in early death. The dogs suffer many of our symptoms and even my vet says no research goes into this disease as it is primarily Shar Pei that get it. These dogs ultimately die from Kidney disease.

    They do know it has a GENETIC link and there is concern to NOT breed animals with it in their PEDIGREE. There is a Post Mortem test called Red Congo Stain and a Registry, that can detect Amalydosis, but many breeders are reluctant to Register their diseased breeding stock, for obvious reasons. This illness is SO MUCH like us, that I am convinced it is the canine manifestation of our DD.

    Most here know, I believe that CFIDS/FIBRO first, 1) requires a Genetic Predisposition to faulty Glutathione production and THEN, 2) SIGNIFICANT exposure to chemicals, and usually pesticides. Exposure could be in utero, through placenta, breastmilk, or through environmental exposure, anytime after birth. I believe it is not a disease, but a poisoning. The body is slowly and painfully dying from poisons exceeding its capacity to detoxify. Again, if anyone wanted to study the ANIMAL version of this, the Shar Pei might be their model.

    *FYI - Animal Amyloidosis is different that the human form of Amyloidosis.

    [This Message was Edited on 06/18/2006]
  7. Cromwell

    Cromwell New Member

    Wow, how interesting. I live near Cornell vet school and I will ask to see if anyone is doing research on this as they should be~!!! They are always looking for research projects for doctorates.

    It is really amazing how this DD is largely ignored by the world as 12 million dx'd(and how many not?) is awfully high to ignore.

    I can really go for the theory of slow poisoning as when I was poisoned with arsenic via treated wood, the symptoms were very similar but came on very suddenly and were much more pronounced immediately and debilitating. I wonder why no one seems to due tissue tests?

    Although we live in an environmentally sound area full of activists, I noted last week that a woman who lives right next to school had the old chem lawn people about to spray just before all the kids walked past. GRRRR. Plus all the baby birds were about to fledge etc. Are these people insane? Why are they so concerned with dandelions? Which are a pretty and useful plant. Because we and many oif our neighbors do not use chemicals the other things is with the mixed grassy areas, they need mowing much less as they are natural, not just a lot of green sod.

    We live in the Finger Lakes, and also the rains will take all these chemicals down to the lake. I think they should be banned. Personally the link I see with autism(which my son has) is soy crops and soy baby formula which no one seems keen to investigate either, but the first ADHD coincided with the intro of soy formulas. We all know how heavily treated soy crops are plus the hormones.

    The chemical industries fund the universities though, who then supply business.

    Love Anne C

  8. elliespad

    elliespad Member

    Don't know if you'd be interested, but here is a link to a page by Dr. Jeff Vidt, THE leading shar pei VET, telling about Familial Shar Pei Fever, An illness, STRONGLY related/confused with Amyloidosis. (Sort of like ADD/ADHD or CFIDS/FIBRO) So close, it is almost indistinguishable. It involves a LOT more than just Kidney problems, just CFIDS/FIBRO is WAY more than "JUST TIRED ALL THE TIME". Anyway, here is the link:
    http://www.drjwv.com/article.php?view=0004.php
  9. Marta608

    Marta608 Member

    How shocking and yet why are we shocked? I don't know about the rest of you but I've wondered many times how much worse I'd feel if I was dying.

    This happened last year. Why is it just coming to light? Maybe some medical type folks fearing lawsuits? Heck, I don't want to sue anyone, I just want my life back.

    Prayers for Casey Fero. Too.

    Marta
  10. ulala

    ulala New Member

    his heart was infected with disease. There was inflammation, and the tissue was FULL OF VIRAL INFECTION. Casey also had old fibrosis, indicating that the viral infection was not of a new onset.** The pathologist was "shocked" at this finding."

    Don't you think the coroner would autopsy his heart and see what kind of virus his heart was full of? Why wouldn't this be stated? Seems strange to me. The info referred to in this article was given to CFSAC from testimony by Mary Schweitzer, Ph.D.

    It seems to me that if there was testimony there would be info on what virus infected his heart? What do you think?

    Wouldn't that prove that if they are saying he died from CFS, and the virus that infected his heart caused it to stop then the virus caused his death? What virus caused his death? I'm confused about this.

    Any thoughts?


    [This Message was Edited on 06/18/2006]
  11. victoria

    victoria New Member

    they did find infection ('micrococci') and treated them with low dose arsenic; there was also a vet in Italy who found he and his wife were suffering what they saw in dogs that they'd treated, so he and his wife took the low dose arsenic as well., and felt they were cured.

    The low-dose arsenic is associated in history with killing the spirochetes of syphilis... interesting because Lyme is a spirochete...

    Google "chronic fatigue italy arsenic vet" there are articles about this...

    Victoria

  12. Jordane

    Jordane New Member

    Gives you goosebumps!!!

    When is it going to be taken seriously????
    This DD???

    Young person such as he dieing from it.Bless his family!!

    Thanks for posting it!!!

    Jordane
  13. jeduanboneis

    jeduanboneis New Member


    When I was diagnosed in the mid 80's with CFS, one of the viruses that was present was the coxsackie virus. The technician said, "You don't want to know this, but a man with coxsackie (sp?) virus was to have heart surgery and when they opened him up and lifted his heart, it fell apart in pieces in the Drs. hands."

    I think about that a lot, especially when my heart hurts, which is more so recently. But hesitate to say anything to anyone as it could be one more thing noone will hear.

    When was this reported? Somehow I am sorry that I have missed it. How do we get the article so we can show our families and friends ??? And Drs. ???

    If the Drs. know about this, why are we still very sick???

    I want to donate my body to science but need to have more info about how and what they will do.
  14. fight4acure

    fight4acure Member

    Did anyone read the article on CFS? That a virus called the Parainfluenza Virus 5 is the possible culprit of CFS?

    Please read the article. It causes death.
  15. phoenixrising2

    phoenixrising2 New Member

    This article can be found at http://www.cfids-me.org/marys/cfsacf05.html. Mary Sweitzer wrote it. It's a sobering article, but people do die from this dd. I feel sorry for Casey and everyone else that has to go through all this and all the time being told there is no such illness. It's tragic.

    Stage, I don't know if it's connected to polio vaccinations or not. There's a book you may want to read called "The Polio Paradox: Understanding and Treating Post-Polio Syndrome and Chronic Fatigue" by Richart L. Bruno. I have the book, but have only read a little bit. On page 12 he says,"There are clear parallels dating from as far back as 1935 between polio and what in the 1980's came to be known as Chronic Fatigue Syndrome." He doesn't think that CFS-ME is caused by a "mild" poliovirus, but it may be that the vaccine that eliminated polio had an unintended consequence. Interesting.

    Cromwell, I do know that Gulf War Syndrome may have been caused (probably was) by vaccinations and it is almost identical to CFS.

    I don't understand why these deaths aren't being taken more seriously. Casey's death leaves many questions. Surely they checked to see what virus caused the myocarditis. But who knows, they don't publicize these things.

    I am going to post about Alison Hunter's death, too. It is also a very tragic one. Alison fought so hard and was not believed nearly to the end.

    Fight4acure, I read the article about Parainfluenza 5 causing CFS. Thanks for informing everyone. We all need to read it.

    Here's to informing everyone about this illness and it's possible consequences!

    Phoenix









  16. Jenbird

    Jenbird Member

    This article poorly explains myocarditis. Myocarditis is an inflammation of the heart because of a virus, bacteria, or a host of other triggers. The virus itself doesn't have to cause the damage. It enters and leaves and lets the body's own immune system to continue the damage to the heart. Often the virus is long gone by the time symptoms appear. It is a very serious condition. It is one of leading causes of death in teenagers and 20 something's.
    I would say this boy died of myocarditis. CFS might have been the manifestation of the damage to his heart. I would look for a connection between the virus that causes CFS and myo. Myocarditis might actually cause some CFS. Many myo survivors talk of symptoms that parallel it. Also, I'd get your own heart's checked. Myo is hard to detect, but I'd try.
    Why do I know this info? My daughter started throwing up a year ago and died less than3 days later from cardiac arrest. Myocarditis was the cause.
  17. McClellanRN

    McClellanRN Member

    I'm sorry for Pat's loss (I was speaking to her briefly in the early 2000's when newly diagnosed then lost my brother around the same time she lost her son--we were both living in Wisconsin and sadly I sank into a deep depression related to multiple factors never knowing of her personal tragedy.) I am so very sorry, as a mother and someone who lost a much younger brother to whom I acted as mother much of my life.

    I have already been told I have an "iffy spot" on my heart via nuclear med testing, but they refuse to do any more intensive testing, though the only stress test they would allow me to do was via injection, which I passed. I have increasing claudication and heart pain but no one will take me seriously despite the fact that I've been diagnosed with CFIDS/ME by one of the most respected Rheumatologists in the world, who I was fortunate enough to see in Chicago, Dr. Eric Ruderman while I still had REAL insurance, not Medicare...which is becoming less and less viable as time goes on. I am all for the ACA, professionally and personally, but I don't see why Medicare had to be decimated to the point where no decent doctors will accept it just to appease the GOP.

    I am deteriorating rapidly, cannot get pain control, which is an increasing issue as the disease becomes more and more systemic (literally every system in my body is now affected in some way) and the lesions in my brain grow and my spine deteriorates to the point that I am forced to undergo frequent injections. Pain medicine is no longer "fashionable" (aka lucrative) so people like us are left with ZERO quality of life, especially in SUPER CONSERVATIVE Wisconsin, where soon only terminal cancer patients will receive pain medication at all. Pain has become an industry run by anesthesiologists who look at us as human pin cushions, to be used up for the maximum number (6) procedures per site, then discarded to die prematurely due to the added burden of stress untreated pain places on our bodies ...or to suicide. They don't care...they've gotten their money out of us.

    We, the "chronic patients" of all kinds are society's new lepers, because now, all these years later, CFIDS/ME is still the most misunderstood of all diseases. We are STILL treated as a psychosomatic and drug seekers (myself even when I have REAMS of expert, objective evidence of my many VERY PHYSIOLOGICAL issues AND a letter from my longtime family physician stating that I was never a drug seeker and that my depression, which does exist now, came AFTER my physical symptoms began.)

    I really don't know what more these people who CALL themselves doctors want from us. Their egos just won't let them admit they don't have all the answers, and ours is not a profitable, easy or "sexy" disease. Believe me...I've worked in the profession long enough to see people die, frequently, for just this reason. I will most certainly be donating my body to science/CFIDS/ME research in hopes that future generations will not suffer like Pat and her beautiful son and "Jenbird's" innocent daughter did. Other than that...I don't hold out a lot of hope for us at this point.

    Michelle
  18. veras

    veras Member

    what a tragic story great thread