Dr. Cheney Lecture at NJ Fall 2005 Conference

Discussion in 'Fibromyalgia Main Forum' started by findmind, Aug 16, 2006.

  1. findmind

    findmind New Member

    I just got a newsletter from the N.J. CFS Assoc. (njcfsa dot org), with Dr. Cheney's latest lecture on Diastolic Cardiomyopathy and CFIDS (reported by Mary Ellen McDermott), back in Nov. 05.

    It is incredible, 8 pages long. Annual membership is $25 and then one can check out items from library: books, vhs tapes and dvds. They have this lecture on vhs and dvd, along with other speakers too.

    Diastolic Heart Failure (DHF) is a failure of the heart to fill properly with blood. (Systolic HF is failure to EJECT it normally, causing congestive heart failure).

    "It was first described in the mid90s, a mere 10 years ago!" Cheney said.

    (Maybe because there were more and more long-term CFS patients who had progressed to this type of heart failure?/MY question)

    He said DHF is associated with small vessel ischemia, which is USUALLY attributed to hypertensive cardiomyopathy, but NOT when applied to CFS patients, who rarely have high BP.

    He listed Heart Failure (HF) symptoms as shortness of Breath, Exercise Intolerance, Fatigue and Weakness and stated "if these are your symptoms, you might have heart failure. Of course, these are often the symptoms of CFIDS".

    Stating 4.9 million cases of HF in US, with 1/2 mill per year and that HALF have Diastolic dysfunction with NO abnormality in the ejection fraction, or classic Systolic HF.

    Because it is newly described, there is no definitive treatment or even firm diagnostic criteria yet, but Lasix, used in SYSTOLIC HF, to improve ejection of the blood volume, is NOT helpful with DHF; in DHF, PRE-LOAD volume needs treating.

    His latest findings include the fact that when CFS patients stand up, their left atrium cavitates (collapses) from 2.78cm to 1.27cm. This drains the heart of blood, which of course means there's no output, either!

    He stated that in his current study, he can use sub-lingual magnesium to get a 50% improvement within 30 seconds. (This is a study: this in not a treatment recommendation!)

    In the very beginning of this lecture, he states, "Oxygen should not be transferred into a cell that cannot use it without effective defenses against its byproducts...the fetal hemoglobin (has) unusual properties to protect it against the oxidative byproducts (of oxygen) that it is not ready to handle yet.

    Symptoms are usually manifestations of defense responses and reflect, but do not cause, the underlying problem. Symptom-based treatment is flawed at bst and dangerous at worst. Adaptation to chronic illness reflects the disease and IS GENETICALLY CODED AS A PHENOTYPE SHIFT." (emphasis mine,"findmind").

    It is my opinion that the CDC's genetic studies that we think show a genetic predisposition to the illness, (or a failure to adapt to an overload of stressors), is, in actuality better explained by this phenotype shift.

    McDermott also reported Cheney as saying, "You can undergo impressive and incredible therapeutic intervention tht gets at the source of the disease, but your disease can linger as a result of this phenotypic adaptation that you went into IN ORDER TO SURVIVE. It takes a long time to get out of it - if ever."

    He also stated, "CFS represents an adaptation to a situation of low oxygen utilization for self-protection."

    Regarding pain, he says, "It's a painful disease, although about 5%..do not have significant pain."

    There is so much more, and reporter Mary Ellen McDermott is to be commended for doing a superb job of telling us about this important lecture. If she's hanging around here, I thank her.

    No, Cheney did not give specific treatment suggestions, but he did say tht they must be applied in a very specific order, the way the body can use them, which I am sure he is trying in his own patients.

    Well, I've typed a lot of this 8 page lecture, and I'm all done in now...I have used too much oxygen here! LOL...

    Hope you can understand the way I have summarized this important lecture of Dr. Cheney's...

    There's always hope!
    findmind


    [This Message was Edited on 08/16/2006]
  2. Mikie

    Mikie Moderator

    It will be interesting when there is enough empirical data for Cheney and others to develop a treatment protocol for this condition.

    Love, Mikie
  3. findmind

    findmind New Member

    Whew, boards moving fast today!

    I'm slow, but think others might be interested in this...

    findmind
  4. findmind

    findmind New Member

    Hope more will want to know this; it really is vital information and not too complicated to read.

    BUMPITY THUNK!

    findmind
  5. kholmes

    kholmes New Member

    Part of me wonders if Cheney is focusing on the heart so much because he had heart failure and then a heart transplant himself. But it could also be that he has discovered these connections with CFS and the heart because of his own heart transplant.

    Cheney seems as knowledgable about CFS as any researcher in the country right now. He was involved in researching the mid 80s CFS outbreak patients in Incline Village, Nevada, and has been at it ever since.

    I'm not sure yet, but I suspect this heart problem is going on with me. My EKG checked out okay, but there is no clinic in town that does a blood volume test.

    Magnesium seems our best best so far, unless people have had luck with Sarah Myhill's protocol of L Carnitine, D ribose, and COQ10. I hope Cheney can find something that works much better than sublingual magnesium, or better yet, I hope he finds a way to fix what is causing the situation.

    I'm also wondering if this heart failure situation is resolvable. I'm certainly not convinced that it's irreparable.

    Kholmes



    [This Message was Edited on 08/20/2006]
  6. spacee

    spacee Member

    I too have followed Cheney's studies for years. I knew about his heart transplant and that he correlated it to CFS. BUT, I had not read the details. Very interesting. I know we all hope that he finds a treatment for the heart problems of CFS. Sooner rather than later.

    The heart was actually one of my first and main symptoms. And it was the hardest for the docs to diagnose. They called it "anxiety" for a few years. You know how when you get that in your chart, it is very difficult for other docs to look beyond it.

    Thanks again! Spacee
  7. jarjar

    jarjar New Member

    Best of my memory you are a Texan....I'm sure you have heard of his free lecture in Ft. Worth next month.

    J
  8. findmind

    findmind New Member

    jarjar, yes, I've heard of his upcoming lecture, but I cannot go. Afterwards, Carol Sieverling always makes VHS tapes of them available to buy at very cheap prices, so I do that..

    I can't SEE all the responses to reply personally, but thank you all for replying, and your comments are right on: Dr. Cheney did have a virus or bacteria attack his heart, but BECAUSE he did NOT have CFS, he had no warning to lie down, equalize the blood flow, etc..the virus or bacteria destroyed his heart.

    That's why he says CFS saves our lives!

    There's always hope!
    findmind