Hmm. After another stuck-in-bed weekend, I will try to summarize the Cheney lecture. Okay, bear with me.
Dr Cheney believes that part of ME / CFIDS is actually a heart disorder. His data shows that our hearts are anatomically intact but the left chamber is slow to fill and we are pumping as little as 60% of what we should be. The blood pressure and volume is not up to the job. Not even close. This has a huge negative cascading effect on the body - cells get hypoxic (starved of oxygen) and we feel as weak as someone with heart failure. When we try to over-ride our severe limitations, the body floods us with adrenalin to try and compensate. The effect is like trying to live on speed and the inevitable and frequent crashes are...well, inevitable. It's no wonder we have to stop - the system requires more fuel than we have to give it. The fall-into-bed factor is not 'fatigue'. It's the body's way of protecting itself for what is essentially an acute crisis of physiology.
The knock on effects of 'running on empty' are too many to mention. The blood chemistry is a mess with chemical alarm signals fighting it out with the body's attempts at compensation -which are counterproductive- eg inflammation, vasoconstriction, down regulation of hormones, etc...
And if we go to a cardiologist? Cheney says we'll most likely meet with ignorance and be sent home because our hearts are anatomically (although not functionally) normal. What caused this dysfunction in the first place? Place your money on a virus.
Treatments? None that work. That old chestnut. Cheney recommends always getting your feet up when possible (to increase blood flow to the upper body) and isotonic drinks (ie water with salt in). In the long term, he'd love to see if injecting stem cells into heart muscle could help. Jeeze. Who's going to be a guinea pig for that one? Another approach is a tablet with pig heart extracts in it. Ditto.
So there you have it. I've taken my blood pressure every morning this week and it's usually 94 over 50. Normal is 120 over 80. I feel like a semi-deflated balloon at a kids' party. Hell's bells. Hold on while I treat myself to another glass of salty water...
-C
PS. Sometimmes I wish I didn't know things so I could just kid myself that I was a bit tired. Ah well, we need people like Cheney. All power to him.
3 comments:
Really interesting reading, Ciara. Sarah Myhill has been working along similar lines recently and has come to similar conclusions. I remember when I got my endoscopy a few years ago, I was up to high doh before it and my blood pressure was still only 90 over 70. I'm feeling so much better since my blood pressure has increased and circulation improved. Still run on adrenalin a lot of the time with subsequent relapses though.
hey c, i hadn't heard the heart theory, it is intriguing . . . though my blood pressure is often bordeline high though even though i often get the dizziness on standing which i think is symptomatic of low blood pressure . . . still i am so heartened (forgive pun) & grateful that there are medics out there who are continuing to research this illness in a mature, scientific fashion unlike the NICE guideliners - i have read their proposals more thoroughly & it seems that something must just be true cos they say so! hope you enjoyed your nieces.
I've read both Cheney's and Myhill's theories, too, and it certainly makes sense with what we've seen here in our house. Both of my sons responded very positively to treatment with Florinef, which helps the body hold onto more salt and fluids, thereby increasing blood volume and helping to better regulate blood pressure. Florinef rarely works as well for adults (my theory is that the dose isn't high enough for us since we saw no effect at all with our 12-yr old son until he got the highest dose used). I have, however, seen improvement with licorice root - which has a similar effect to Florinef - and with lots of salt and fluids. Plain salt water upsets my stomach, but I drink lots of V-8 juice every day (lots of sodium and potassium). Oh, and don't be misled by "normal" blood pressure readings. Like everything else in CFIDS, this problem doesn't show up in regular tests. You have to do a tilt table or standing test to see the effect (something that's likely to make you very sick; better just to try fluids and salt to see if they help). It's certainly not the root cause of CFIDS, but Orthostatoc Intolerance and its related heart effects seem to be at the center of many of our symptoms. It's definitely worth trying, if you haven't already, after consultation with your doctor. Check out http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm for more information to read and share with your doctor. Hope it helps!
Sue
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