The Blood Volume Paradox in Chronic Fatigue Syndrome (ME/CFS) and POTS

[Arison]

Kunihisa Miwa is a respected Japanese researcher from Kyoto University. Didn't take much research to find that Cort. Maybe a little disrespectful to publish a review with he/she?

 

[Snow Leopard]

Kunihisa Miwa is a respected Japanese researcher from Kyoto University. Didn't take much research to find that Cort. Maybe a little disrespectful to publish a review with he/she?

Yes, to start with, Kunihisa Miwa was a co-author of the Myalgic Encephalomyelitis International Consensus Criteria...
https://www.researchgate.net/profile/Kunihisa_Miwa

 

[Cort]

Kunihisa Miwa is a respected Japanese researcher from Kyoto University. Didn't take much research to find that Cort. Maybe a little disrespectful to publish a review with he/she?

Not intended to be disrespectful. I was told that Miwa is a female name so I changed it to she- then I realized that Miwa was the last name - so then I didn't know. Yes, I probably should have checked further but I doubted that Miwa would ever see this blog to tell you the truth so I moved on.

It actually does take quite a bit of research and work to put a blog together -even one that doesn't get the gender right or which misses an affiliation. I certainly welcome any blogs from anyone willing to do the research and write them up. Are you game?

 

[Cort]

Yes, to start with, Kunihisa Miwa was a co-author of the Myalgic Encephalomyelitis International Consensus Criteria...
https://www.researchgate.net/profile/Kunihisa_Miwa

I'm glad I know that now, but to be honest I don't remember any of the ICC authors off-hand Checking the ICC roster to see if Miwa or anyone else was on it is not something I would do. Still I'm glad to get that information...

 

[Stacy]

Glad to hear it made some difference. I wonder about the connection between ME/CFS and diabetes insipidus / I wonder if there's something going on there.

The endo (quite rightly) was hesitant to speculate about a connection, except to say that given my history of symptoms the ME/CFS might have caused the diabetes insipidus, but probably not the other way around. There is no obvious cause for the diabetes, though, like a tumor or brain injury that would have shrunk that lobe of the pituitary gland.

 

[AliceE]

Kunihisa Miwa is a respected Japanese researcher from Kyoto University. Didn't take much research to find that Cort. Maybe a little disrespectful to publish a review with he/she?

Disagree. Disrespectful, in my book, would be to come to a site that provides an incredible amount of free information to whoever wants to read it, and then accuse the man who put the site together, sorts out all the glitches, collects the research, writes it up and brings it to us on a daily basis of being disrespectful.

 

[Cort]

Disagree. Disrespectful, in my book, would be to come to a site that provides an incredible amount of free information to whoever wants to read it, and then accuse the man who put the site together, sorts out all the glitches, collects the research, writes it up and brings it to us on a daily basis of being disrespectful.

Thanks! I appreciate that

It is a heck of a lot of work.

 

[ShyestofFlies]

Wasn't Dr. Lerner really into the heart's relation to CFS, or at least those who now continue his research?

Ah had this page bookmarked http://www.treatmentcenterforcfs.com/FAQ/index.html

Interesting what they said about veins, aren't thin/poor toned veins a part of EDS symptoms too?

 

[ShyestofFlies]

They've been talking about orthostatic tachycardia in ME for decades before CFS was created.


Phillip Low at Mayo published a paper on POTS seven years before this study. I'm not sure if he was the one to coin the term but it's the first appearance in the literature of the term that I've found. Otherwise it was just called orthostatic tachycardia prior to this and I see that term being used as early as the 1940s.

At some point POTS was called "Mitral Valve Prolapse Syndrome" I think, encountered it a while back trying to connect the dots, my mom and maternal grandmother had Mitral Valve Prolapse and I was monitored as a child incase I also had it, though not very closely haha.

 

[IrisRV]

How does one measure blood volume?

The Daxor test is the best although it may be hard to find.

As I understand it, the Daxor is the only direct test for blood volume, but it is difficult to find and can be expensive. As with most of medicine it seems, there are secondary measures and clues doctors used before Daxor was available, and which they still use in most areas. Try to get a doctor to order a Daxor test when s/he doesn't even believe ME is a real illness.

There is a simple test that you can do at home that will give you a pretty good idea whether you have low blood volume. Take your blood pressure, then subtract systolic minus dystolic. This is your pulse pressure. Normal pulse pressure is about 40 mmHg. 25 mmHg is considered extremely low. It is seen in Congestive Heart Failure and hypovolemic shock. If you have low PP, it's a good sign you have low blood volume -- assuming it's not the result of Congestive Heart Failure.

Many of us have found we frequently have a PP less than 30 mmHg and even less than 25 mmHg. This week I have been trying to adjust my fludrocortisone dosage to adapt to some new conditions. My PP when off fludro was consistently under 25 mmHg. At 0.1 mg fludro twice daily, my PP is in the high 40's or low 50's, but my BP gets too high. I'm now trying 0.1 mg fludro once daily to see if I can keep my PP closer to 40 without developing high BP.

Of course drinking lots of water with electrolytes can help with blood volume, but for me (and others) it's simply not enough and meds are necessary. Even drinking more than the recommended 3L daily for a person with low volume/dehydration, I can't keep my PP consistently above 25. The water just goes straight through me.

ADH (aka vasopressin) and aldosterone control how much water your kidneys keep in your blood. If either is too low you end up with low blood volume. Vasopressin in made in the hypothalmus. Aldosterone is made in the adrenals. PWME often have hypothalmus or adrenal issues, so it wouldn't be surprising for there to be problems with hormone production in those organs. Desmopressin is the medicine replacement for vasopression, while fludrocortisone is the medicine replacement for aldosterone. Both are prescribed fairly commonly by ME specialists.

 

[Veet]

@IrisRV I've been thinking of you. Nice to see you back.