Anyone read the Cheney article?

Discussion in 'Fibromyalgia Main Forum' started by kholmes, Sep 8, 2005.

  1. kholmes

    kholmes New Member

    I was a newby two years ago (CFS sufferer), then stopped reading and posting when I went into remission and was able to get back to worik. I relapsedsix months ago, leaving me disabled again.
    The latest Cheney "heart" article based on interviews with him seemed to have a lot of inflammatory, "death zone" type of rhetoric, despite the scientific detail about cardiomyopathy. More than a bit disturbing, I thought, and full of the kind of language that can lead to fear and stress.
    Any opinions on his heart theory or the article?
    Thanks.
  2. Empower

    Empower New Member

    I too was frightened by his cardiomyopathy theory

    Anything in particular that you did to go into the remission?

    I am on a downslide right now
  3. moxiepup

    moxiepup New Member

    Hi, nice to meet you. I did read the whole long article...I found it very odd but yet I couldn't stop reading it.

    I don't get his whole theory about the only reason for him getting so sick and needing a transplant was because he doesn't have CFIDS. Well I do and FMS & CEBV, a lot of what he was talking about would make some sense to me one minute then the next sentence sounded like science fiction.

    I'm not a medical professional, the closest I came was working in a lab and doing EKG'S & Phlebotomy for 8yrs.

    I would like to see how many Cardiologists agree with his theory's, I think your right he is scaring a lot of people with this stuff. Sure PWC are going to get Cardiomyopathy just because they are part of the general population not because we have these DD'S IMO :))

    take care,
    gail
  4. judyraye

    judyraye Guest

    Maybe I misunderstood, but the government gave a grant to the New Jersey Medical Center to conduct this study. I haven't done research on Dr. Cheney yet or looked at the study results on the cfids.org archives or Dr. Peckermans article on Web MD but I plan to. I did find it upsetting especially when it said not to take Provigil. But it makes sense to me since I often have chest pains, soreness, & difficulty breathing. For me, it's worth further study and maybe a trip to a cardiologist.
  5. kholmes

    kholmes New Member

    I, too, have chest pains and some trouble breathing, although my doctor thinks it's fibromyalgic muscle pain.
    I'm seeing a cardiologist in about a week.
    Two years ago, I had full-fledged CFS, did acupuncture, colon hydrotherapy, herbal cleansing, lots of rest, Seriphos for adrenal glands, tylenol pm for sleep, and gradually improved. I'm not sure what really caused the improvement.
    But six months ago, I relapsed, and now I'm mostly bedridden, though I can walk to the kitchen and go for short rides in the car. I'm in pretty bad shape and doing everything I can to improve again.
    But this CFS thing sure sucks, doesn't it?
    Reading lots of good books, watching the Solheim Cup (Women's golf) and trying to keep a positive attitude.
    Despite my severe illness, life isn't too bad on some days.
  6. LittleBluestem

    LittleBluestem New Member

    I think that is about a close to dying as you can get. It is bound to affect one's outlook. He also may be tired if people being dismissive about CFS and exaggerating some to make a point. I do think he is a bit overboard on the scary stuff.

    However, when people have dysregulated immune systems that leave them unable to ward of virus and mycoplasma for years, I am not surprised that they are winding up with heart infections.
  7. moxiepup

    moxiepup New Member

    please read this story by Dr.Cheney
  8. moxiepup

    moxiepup New Member

    please read this story by Dr.Cheney
  9. jojoscotland

    jojoscotland New Member

    ITs been a long time since i wrote on here, 1 because iv been better and the other i havnt had much time because of being better, although still in pain and feeling ill most of the time im coping with it alot better..... so imagine my horror when i read Dr Cheneys article, i was terrified, even woke my husband up to read it!!! Now i have calmed down and thought about it i realy i agree with lamotta77, there are so many people who do recover fully that his theory is just circumstantial evidence...... just the same i think i will ask my GP about it :)
  10. Tantallon

    Tantallon New Member

    the body slams the breaks on before you suffer heart failure, it's a peverse sort of safety net. I think what he meant was that because he didn't suffer from CFS, his safety net wasn't there and that was why he had to have a heart transplant.

    So you could look at it this way, the body knows something is wrong and won't allow you to carry on till it rights itself - a viral cause, is Cheyney's theory, so in that respect you could say it's a blessing in disguise, depending on how you feel about it.

    Sue.

    I do agree with Lamotta77 however, if there is a heart problem just how does yoga, meditation and reverse therapy fit in as treatment that works in some cases and until this question is answered fully it is hard to believe totally in his theory.



    [This Message was Edited on 09/09/2005]
  11. elsa

    elsa New Member



    I enjoyed reading your reasoning on Dr. Chaney's
    article. I am somewhat familiar with his work and hadn't
    really agreed with his theories where I am concerned.

    Basic stress tests have me rated as a "teenage runner"
    so where does that put me?

    I haven't read the article yet. Not sure I want to read
    anything inflammatory .... I mean what is he saying? I have CFS because I really have cardiomyopathy(sp) and I need to stay as still as possible so my heart doesn't give out? Or that it is just a matter of time before my heart will give out?

    I obviously need to read the article. I'm just not in the mood to read about doom and gloom ....

    Anyway, thanks for your insights ....

    Elsa
  12. sh2angel

    sh2angel New Member

    I read the article and it didn't scare me...I have thought all along that something was wrong with my heart..my husband is a nurse and he says all the stuff he explains are acurate..and they all hit me in the same way he explains in the article..right on down the line..I had Cfs first then developed Fibro and so on...I say give the Dr a hand...
  13. Mikie

    Mikie Moderator

    Since we do not know what causes CFIDS, and because many are probably misdiagnosed, we can't say for sure that every single person with CFIDS has cardiomyopathy. A person with a viral infection can have a damaged heart which may or may not produce sufficient blood volume. Cardiologists have know this for a long time. Even particles from viruses, called, prions, can cause an infection in the heart.

    It may be only the sickest with CFIDS whose problem has led to an enlarged heart. Those in earlier stages may simply never get to that point because they lie down a lot and the heart is seldom pushed by lack of blood volume. I was bedridden most of the time when my CFIDS was at its worst. I have also taken steps to heal the infections, both bacterial and viral, which have made me sick. Still, I get fatigued and I lie down.

    I did get a complete cardio checkup with a nuclear stress test, and echocardiogram, and some other test done both before and after the stress test. It uses x-ray to take pictures of the heart. My cardiologist told me that it was not possible to have a more healthy heart than mine. This was a big relief to me. He also said there was no lack of blood volume.

    Dr. Lerner is another expert who is investigating the CFIDS-heart problem connection. Dr. Cheney hasn't done the primary research; he is using secondary research based on others' work. Dr. Cheney does not write these articles. One of his oldest patients interviews him and writes them. I believe that this is what gives his articles a more dramatic tone. He is a passionate man.

    I await more research on this, but anyone who has a chronic infection, probably most of us, is in danger of heart damage. I feel very fortunate that I have a healthy heart despite having been sick almost 15 years. I also was able to have remissions, but after the initial infection, I was never quite the same again. I think we are capable of remissions, but only to a point. If we continue to push ourselves or we get sick or are exposed to toxins, we can relapse.

    I wouldn't get upset over this cardio involvement. More research will be done and we will learn more. In the meantime, if there are symptoms, get it checked out. What Cheney is saying is that he likely would not have suffered heart failure if he had CFIDS because it would have stopped his heart from failing. He would have had to lie down and take it easy instead of pushing himself so hard. He is not a young man but works like one. He has been a real voice for PWC, even when it threatened his livlihood and professional standing. To me, he is a hero, even if he is a bit dramatic to make his points.

    Love, Mikie
  14. Tantallon

    Tantallon New Member

    I too would say that there are differing degrees of this illness and it would make sense that those that are initially forced to rest stand more of a chance of being able to recover through taking steps that reduce the stress that the body is put under thereby allowing the body to heal itself without further complications.

    I too am an admirer of Dr Cheyney and his relentless quest to help people who suffer from CFS find an answer and ultimately a treatment to aid in combating their illness.

    Love, Sue.

  15. tansy

    tansy New Member

    There is no doubt rest in the early stages can improve the odds in favour of a significant improvement given time or remission, especially in acute onset cases. What we do know is that in many cases of ME/CFS infections, toxins, and/or vaccines are involved; these may have an effect upon the heart either directly or indirectly.

    Mercury, just one of many toxins being found in patients with these DDs, can affect the heart.

    J Am Coll Cardiol. 1999 May;33(6):1578-83.

    Marked elevation of myocardial trace elements in idiopathic dilated
    cardiomyopathy compared with secondary cardiac dysfunction.

    Frustaci A, Magnavita N, Chimenti C, Caldarulo M, Sabbioni E, Pietra R,
    Cellini C, Possati GF, Maseri A.

    Department of Cardiology, Catholic University, Rome, Italy.

    PMID: 10334427


    OBJECTIVES: We sought to investigate the possible pathogenetic role of
    myocardial trace elements (TE) in patients with various forms of cardiac
    failure.

    BACKGROUND: Both myocardial TE accumulation and deficiency have been
    associated with the development of heart failure indistinguishable from an
    idiopathic dilated cardiomyopathy.

    METHODS: Myocardial and muscular content of 32 TE has been assessed in
    biopsy samples of 13 patients (pts) with clinical, hemodynamic and
    histologic diagnosis of idiopathic dilated cardiomyopathy (IDCM), all
    without past or current exposure to TE. One muscular and one left
    ventricular (LV) endomyocardial specimen from each patient, drawn with
    metal contamination-free technique, were analyzed by neutron activation
    analysis and compared with 1) similar surgical samples from patients with
    valvular (12 pts) and ischemic (13 pts) heart disease comparable for age
    and degree of LV dysfunction; 2) papillary and skeletal muscle surgical
    biopsies from 10 pts with mitral stenosis and normal LV function, and 3) LV
    endomyocardial biopsies from four normal subjects.

    RESULTS: A large increase (>10,000 times for mercury and antimony) of TE
    concentration has been observed in myocardial but not in muscular samples
    in all pts with IDCM. Patients with secondary cardiac dysfunction had mild
    increase (< or = 5 times) of myocardial TE and normal muscular TE. In
    particular, in pts with IDCM mean mercury concentration was 22,000 times
    (178,400 ng/g vs. 8 ng/g), antimony 12,000 times (19,260 ng/g vs. 1.5
    ng/g), gold 11 times (26 ng/g vs. 2.3 ng/g), chromium 13 times (2,300 ng/g
    vs. 177 ng/g) and cobalt 4 times (86,5 ng/g vs. 20 ng/g) higher than in
    control subjects.

    CONCLUSIONS: A large, significant increase of myocardial TE is present in
    IDCM but not in secondary cardiac dysfunction. The increased concentration
    of TE in pts with IDCM may adversely affect mitochondrial activity and
    myocardial metabolism and worsen cellular function.
  16. Mikie

    Mikie Moderator

    My EKG's and earlier stress test had some changes to the T and S waves. Today, this alone, warrants further testing. The more sophisticated tests showed a healthy heart.

    I have dropped 14 pounds and am working out aerobically to the best of my abilities. I'm very fatigued as I wean off the Klonopin which has stopped helping me to get good quality sleep. My pharmacist told me that benzos do not interfere with deep stage sleep. Still, I see no reason to continue with the Klonopin if it isn't helping nor needed. Once I'm off the Klonopin altogether, if I'm still not sleeping well, I'll be trying something else.

    I was given a beta blocker to try to lower my BP and heart rate. It made me deathly sick and my BP skyrocketed. That, at half the dose--Yikes!!! Since working out and taking a diuretic, my BP is way down but the heart rate is only slowly improving. Oy vay, it's always something.

    Right now, things are dicey. I feel that I've got too many things going on at once, but the weight loss is vital to my BP, heart rate, and overall health. It takes so long to wean off the Klonopin that I don't feel as though I could wait. I need to get off of it so I can concentrate on my sleep. I'm having no trouble weaning off except I'm a bit more restless than usual. No major symptoms, though.

    We have so many systems which are affected by CFIDS that it's such a complex balance to try to achieve. You change one thing and it affects everything else. I think I'm on the right track, but it's not going to get better for a while. Right now, I'm also pulsing the TF's, but that will be over with, including the Herx, within a week.

    No matter what, I'm still better than I was about five years ago. That tells me that I've been doing something right. Still, it's not enough and I continue the quest. We are all in the same boat, but our rescue may be different from one another. Still, I think sharing is very helpful.

    Love, Mikie
  17. crillee

    crillee New Member

    personally made me very scared...really don't think the term "death spiral" needed to be used.
  18. Mikie

    Mikie Moderator

    The reason he doesn't know anyone with CFIDS who has died from this heart condition is that he believes the CFIDS keeps one from pushing oneself over the edge. It is the CFIDS, not the heart, which, according to his theory, which protects one. If one is too tired to push oneself to the point of a heart attack, one is protectd.

    The heart doesn't pump enough blood and the PWC gets fatigued and lies down. This increases blood volume and the PWC feels better.

    Like many of us, when Cheney speaks, it isn't always clear. I think there is a lot of misunderstanding of what he is saying. It should have been written more concisely and in a clearer manner without the emotion. Most of his articles are easier to understand.

    Love, Mikie
  19. colinjn

    colinjn New Member

    Good Thread People!!
    Tansy thaks for the article, it answered some criticisms I have read online.

    Remember that this article is a compilation of interviews with specific patients. There is a disclaimer about that.

    Also Cheney seems to imply that CFS is a cluster illness and that he is talking about one subset of patients.

    The scary thing is that the Peckman study was sponsored by Social security and could be a weapon to be used by all the insuring agencies who are looking for a hard number diagnostic. ( my doctor's first concern)

    Cheney seems to make a strong link with mercury poisoning ( and again I thank you for the supporting article) But I wonder why he didn't explore chelation therapy, over a heart transplant for himself. ( Perhaps he discovered this too late?) And it seems that if you follow the logic, the way to get better is to remove the comtamination; however his suggestions seems to be pallative.

    There are more points, but I think this is enough for now

    Colin
  20. vertiesmth

    vertiesmth New Member

    KHOLMS, HI, WONDERING IF THERE ARE THOSE IN THE ALBUQ. AREA WITH FM WHO WOULD LIKE TO COMMUNICATE. I LIVE IN TUCUMCARI, AND HAVE SINCE 1950. MY EMAIL IS VERTIESMTH@YAHOO.COM THANKS VERTIE