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Weeny Hearts in ME/CFS Patients

Discussion in 'Latest ME/CFS Research' started by Cort, Jul 28, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    Its so unfortunate that heart research - published heart research that is - basically stopped completely in the US with the death of the CFS Cooperative Research Centers around 2001.

    This Japanese study suggests that a significant number of CFS patients are small hearted - not that they aren't good people - but that their hearts are smaller than expected as was their cardiac output. Both diastole and systole were reduced. I don't know why they think this might be happening. THis is the second study they've done that found this.



    1: J Cardiol. 2009 Aug;54(1):29-35. Epub 2009 Mar 28.
    Cardiac function fluctuates during exacerbation and remission in young adults with chronic fatigue syndrome and "small heart".

    Miwa K, Fujita M.
    Department of Internal Medicine, Nanto Family and Community Medical Center, 577 Matsubara, Nanto, Toyama 939-1518, Japan.


     
  2. Chris

    Chris Senior Member

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    weeny hearts

    Hi, Cort; I offer these observations on my own case as possible explanation; my latest echo (Sept 2008) showed a decrease in left ventricle size from the previous echo of about 18 months earlier; it also showed irregular wall motion, a very high ejection fraction (over 70%) and an E to A ratio of well under 1, suggesting strongly diastolic dysfunction. In other words, my heart was acting exactly as Cheney describes CFS hearts acting in his latest DVD. I suspect my ventricle was not so much smaller as not filling fully, unable to relax properly--as Cheney points out, this filling actually takes more metabolic energy than does the systolic squeeze. My docs, both family and cardio, of course interpreted these results as showing there was nothing wrong with my heart function, and my very marked symptoms were all due to "anxiety" or "emotions." Docs are hopeless. Best, Chris
     
  3. Jessrose21

    Jessrose21

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    This is fascinating to me as I have a small heart as well as ME/CFS. Orthostatic Intolerance has been a main symptom since I got sick in 1993 at age 15, and got worse in my late teens. I finally had a proper tilt table test at 23 and was found to have severe bradycardia (slow heartbeat) after about 10 minutes of being upright. My heart rate slowed down below 30 bpm. Who knows what would have happened if the doctor hadn't set me horizontal! During subsequent surgery to have a pacemaker installed, the surgeon had difficulty getting the wire leads embedded into my heart wall because my heart was so small. A surgery that should have taken 2 or 3 hours ended up taking 5 1/2!! The pacer hasn't cured me by any means, I'm still only able to do 15 to 20% of a normal person. But at least I don't have to lay down all the time anymore feeling like I'm dying. Now I can sit up and feel like crap! LOL! Seriously, though, I'm so thankful for my pacemaker. I'm just waiting for the dr's to fix the rest of me.

    The thing that makes me scratch my head, is that I never had any heart problems before I got sick, and I assume I've always had a small heart. I was so healthy as a kid, hardly even had a cold.
     
  4. Cort

    Cort Phoenix Rising Founder

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    Hi Jesse,

    Have they been able to find any other reasons for the orthostatic intolerance? Any other abnormal tests?

    Yes -Chris they have alot to learn don't they. Unfortunately we have tests and results they've never seen before I guess!
     
  5. Jody

    Jody Senior Member

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    I had my heart checked out during a couple different time periods -- back in 1992 when I was having acute attacks -- that is to say, I would have 6 wks of intense cfs symptoms after the onset of a cold, and then I'd be fine in between these 6 wk bouts. Heart looked fine.

    Again in 2004, when I thought I was having a stroke and Dr. found my blood pressure to be dangerously high (when it is normally 120 / 80). Again, heart was fine. Oh, and my blood pressure went quickly back down to 120 / 80 again. No idea what caused all that.
     
  6. Stuart

    Stuart Senior Member

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    Cardiac Issues and EDS

    There are possible underlying conditions that can lead to cardiovascular abnormalities. Many fibromyalgia (FM) patients have Ehler-Danlos Syndrome or EDS, this is due to a genetic variation that causes stretchy collagen. This causes other disorders like Hypermobile Joint Syndrome; HJS causes pain signals in the joints that sensitize the central nervous system and exhausts the adrenals.

    The stretchiness also keeps the vascular system from properly compressing the vessels when you stand up, this is one cause of orthostatic intolerance (OI) and postural orthostatic tachycardia syndrome (POTS). The venous trapping or pooling of blood in the legs as you stand lowers the blood supply to the head and trunk, often your pulse rate and blood pressure drop, (you may notice your hands shaking), eventually causing a fight or flight response pumping adrenaline into your system causing your heart to race to get the blood supply up to your brain and organs.

    An actual tilt table test can be dangerous and should only be performed at a full cardiac center. A modified test is to stand and lay down at rest for at least 15-20 minutes while monitored for heart rate and blood pressure, both of which should drop over time.

    EDS can also cause hernias, (hiatus hernia of the esophagus is common), mitral valve prolapse, neurally mediated hypotension, Hashimoto's thyroiditis, Temperomandibular Joint Syndrome, Reynauds, easy brusing, flat feet, tethered spinal cord syndrome, chiari malformation, irritable bowel syndrome (gut permeability?), etc. I also recall something about right ventricular hypertrophy. I imagine having arrhythmia, tachycardia, and bradycardia might be a side effects as well.
     
  7. SDD1244

    SDD1244 Guest

  8. Chris

    Chris Senior Member

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    hearts and BP

    Jody, I too had bouts of very high blood pressure during the first two intense years of on and off symptoms--suspect at least part of the answer lies in Cheney's "The heart of the matter" piece--heart output dropping, the autonomic nervous system raising blood pressure so that all vital organs get some blood fed to them--watering the tomatoes is his metaphor. I still think of that as a fundamental document in understanding this whole thing. I did find that lying down and steadying and slowing my breathing led to rapid and large reductions in BP--I could bring my systolic down from 190 to 140 quite quickly usually. Which suggests autonomic control rather than some fundamental defect of circulation. Best, Chris
     
  9. Jody

    Jody Senior Member

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    Chris,

    I read that piece of Cheney's as well, and found some of it very helpful in looking at this illness.

    I went through many months of the Gotta Fall Down Now feeling, and spent much time lying down, making a point of it through the day. It helped I think. And helped in a small way in recovery as well.

    And I agree, it does seem like it could be autonomic rather than circulatory.
     
  10. Finch

    Finch Down With the Sickness

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    Cardiac Component

    I've always felt, with my own intuition, that there has been a cardiac component to my ME/CFS problems. Many times I've wondered if I had some sort of heart failure. Any cardiac tests, however, including at least two echocardiograms (maybe three) have shown no abnormalities (much like all the other standard tests).

    The fact that I usually can't stand for more than a few minutes without feeling very distressed is just part of it, but it's probably the major part. Also, when sitting, I'm always trying to get my feet up off the ground. Sitting with my feet on the ground is almost as bad as standing. It just feels as though my heart simply can't do the job.

    I've had high blood pressure issues all along and probably need to monitor my blood pressure away from a doctor's office to see what the real picture is. I do take medication for the hypertension, which may or may not be making the situation worse. I really can't let my blood pressure be out of control, though.

    Here's hoping that more research is done on the cardiac aspects or our illness. Whether they're primary or secondary, it would be wonderful to find a proper way to address them!
     
  11. klutzo

    klutzo Senior Member

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    Brain shrinkage too!

    Hi SDD1244,
    Don't forget to add brain shrinkage to that list. I believe I read we have an 8-11% shrinkage in brain size. No wonder I can't remember anything.

    klutzo
     
  12. Chris

    Chris Senior Member

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    Heart stuff

    Hi, Finch; have you read Cheney's "The Heart of the Matter"? -- well worth reading; also check out his recent DVD talk, "CFS: Is Oxygen the Problem?" there is a lot on hearts there, some of it new, including the news (findable elsewhere on this site) that a very high % of us CFSers have a literal hole in our hearts--foramen ovale patent. Not to worry too much--it usually does no serious harm! But do check out Cheney's work, and the essay by Peckerman that is referred to in "The Heart of the Matter" (just a Google search will find that). Best, Chris
    PS and Cort of course has a lot of stuff on hearts on this site too.
     
  13. Finch

    Finch Down With the Sickness

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    Hi Chris. I may have read that, but I don't remember! I'll look for it.

    Is that the same type of hole in the heart that can be associated with migraines? Would it show up on an echocardiogram?
     
  14. Cort

    Cort Phoenix Rising Founder

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    I wanted to bump this thread up to the top because the Japanese just published another study on small heart syndrome.
     
  15. BEG

    BEG Senior Member

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    To those with high blood pressure . . . Are these resting rates? Or are the blood pressures related to standing too long, ex. POTS? Stupid me, I thought low blood pressure together with CFS are a given.
    My resting rate is on average 112/65. Or on a day I am post-exertionally fatigued, it might be 95/50. On those days, I can't stand. After a P.O.T.S. episode, it drops to the point where I can't get a reading on the digital blood presure cuff until I've been sitting for awhile. Then, on average, it is somewhere near 65/45. It has been lower.

    Also -- I liberally use salt. What does salt do to those of you with high blood pressure? Do you avoid it? Do you use it?
     
  16. dsdmom

    dsdmom Senior Member

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    Just saw a new neuro

    Earlier this week I had an apt with a new neuro to have him follow my autonomic issues, mainly orthostatic intolerance. Anyway, he actually mentioned something to me about small hearts and reduced cardiac output and OI. I told him that I have had several echos and was always told my heart looked great. He told me that the only way to really measure it is via MRI. I was always extremely athletic before I got sick and it was some awful medical trauma that left me very ill and in bed and then I developed OI, CFS, etc. His theory was that it could be that because I was extremely athletic my whole life, my heart had enlarged (like any muscle would with use) and then when I was bed-bound for so long it 'shrank' or 'atrophied' - however you want to put it. So maybe I was predisposed to this w/ the size of heart I have (if that is indeed the case- hasn't been measured) and I counteracted it my whole life by being so active.

    Of course this fails to explain other issues I have but still, I thought it was interesting particularly since I recalled seeing this thread posted a while ago.
     
  17. Hysterical Woman

    Hysterical Woman Senior Member

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    High BP & CFS

    Hi Guys,

    Here is a link to Dr. Cheney's streaming video called "CFS & Diastolic Cardiomyopathy". It is not his latest, but it is informative even if very long.

    http://www.cfids-cab.org/MESA/CFS_Dist.htm

    Somewhere in here, tho, maybe half way, he talks about high blood pressure. I got the impression that he said it is unusual for CFS patients to have high blood pressure (BEG, I think you mentioned this too), but I see a number of people in this forum saying they do have high blood pressure. Maybe I didn't understand what he said correctly?

    For myself, I have had low blood pressure all my life until the last couple of years when it kept dangerously inching up close to 150/80. My doctor was very close to start yelling at me when a friend of mine who sees Dr. Cheney strongly recommended taking magnesium for CFS. I was lucky in that after getting some magnesium into my system, my bp dropped by almost 20 points. I didn't make any other changes, salt or otherwise. I have mentioned about how magnesium has benefited me in some other threads, but don't wish to become that magnesium woman.

    I would also love to say that magnesium has "cured" me of cfs, sigh, if that were only true. It has definitely helped the blood pressure, sleep problems, and leg pain.

    Take care,

    Maxine
     
  18. JillBohr

    JillBohr Senior Member

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    Speaking if circulatory problems

    There is an interesting article on the Huffington Post regarding MS. I think of MS often because my ex-husband had a cousin die of it several years ago. My uncle's wife died of it last year and I have a dear friend whose mother also has it. I also know that they are looking at XMRV and atypical MS. To be honest, I do not know what atypical MS is. Anway, according to this article. This Italian scientist thinks that MS may not be an autoimmune problem but a vascular problem. Here is an exerpt:

    " His research suggests that MS is not, as widely believed, primarily an autoimmune condition, but a vascular disease (CCSVI, short for chronic cerebrospinal venous insufficiency.) Dr. Zamboni found that, in over 90 percent of people with Multiple Sclerosis, the veins draining blood from the brain were constricted and this led to a buildup of iron in the brain that, he theorized, causes the neurological symptoms of MS. "

    You can find the link here:

    http://www.huffingtonpost.com/erika-milvy/possible-ms-breakthrough_b_396448.html

    I also want to add that I feel for the MS sufferers because I feel our media is very reluctant to print or show any news any medical breakthroughs for any disease.
     
  19. ramakentesh

    ramakentesh Senior Member

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    I dont know why that thumb down thing appeared = sorry!!

    Nice in theory - but Medows and Stewart et all demonstrated that the reduced thoratic blood volume found in POTS and COI is caused by blunted arterial constriction rather than venous compliance deficits:

    http://www.circ.ahajournals.org/cgi/content/abstract/105/19/2274

    I wonder if a constant reduced orthostatic stroke volume might account for the reduced heart size finding - well in POTS anyway if it applies:

    http://jap.physiology.org/cgi/content/full/103/4/1128

    It is possible that EDS may cause a 'type' of orthostatic intolerance characterised by venous pooling in the lower extremities but it should be stated that EDS accounts for only a percentage of patients - and probably not a large one.

    The largest groups of COI patients appear to either have an autoimmune neuropathy that is selective to the lower limbs, but without reductions in cardiac innervation making it more suspectible to the increased sympathetic outflow activated by blood pooling.

    There are also subgroups of OI patients that appear to have nitrergic parasympathetic withdrawal which impaires cerebral vasoregulation when upright:

    http://ajpheart.physiology.org/cgi/content/abstract/297/2/H664

    There are ofcourse a number of other possible pathologies - increased angiotensin II mediated reductions in neuronal nitric oxide levels which have clear implications in causing a type of hyperadrenergic POTS and in reducing exercise tolerance:

    http://cat.inist.fr/?aModele=afficheN&cpsidt=17425253

    http://ajpheart.physiology.org/cgi/content/abstract/293/4/H2161

    http://www.circ.ahajournals.org/cgi/content/abstract/CIRCULATIONAHA.104.526764v1

    And in muscular distrophy and CFS:

    http://chronicfatigue.about.com/b/2...exercise-fatigue-chronic-fatigue-syndrome.htm

    NET deficiency - either acquire or genetic also accounts for some POTS and OI patients.
     

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