New book on orthostatic intolerance by Dr Peter Rowe

[kushami]

A comment on another thread by @maddietod alerted me to Dr Peter Rowe’s new book:
“Living Well with Orthostatic Intolerance: A Guide to Diagnosis and Treatment”

https://press.jhu.edu/books/title/53708/living-well-orthostatic-intolerance

I thought it would be interesting to have a discussion thread here as Dr Rowe also treats ME/CFS.

I have had a look through the table of contents and the sample pages (on the Amazon listing, although you can ourchase directly from the university press). I think it’s good that he has collected all this information in one place, as there is not that much published on orthostatic intolerance as opposed to POTS, although I am sure there is plenty of POTS content.

I will be interested to know whether he covers OCHOS and HYCH, either by name or by description as orthostatic intolerance syndromes without abnormalities in blood pressure and heart rate on orthostasis.

I might suggest it as an acquisition to my local library.

 

[marcjf]

I was able to get a free version of this book. I would not recommend others to buy.
It's a typical orthostatic intolerance (OI) guide that you can find in many other places. The same old story about salt, compression, drug profiles (pyridostigmine, mestinon, etc.), yada, yada, yada. The only thing probably worth some attention are the case studies presented at the end of the book.

I would expect a new publication on OI to bring new information that we already don't know, specially with this being studied so much after Covid-19. But then when you get to the chapter on what causes it, the author is like "The answer to this question is not well understood", proceeded by rambling.

This feels like someone milking more money from sick people.

 

[wabi-sabi]

This feels like someone milking more money from sick people.

Dr. Rowe is one of our champions. He is not milking anyone.

1) OI isn't well understood and he is not going to pretend that it is. We wouldn't be here if it were. This is down to the BPS people, not Dr. Rowe. Dr. Rowe has been telling people for decades that OI is not about deconditioning as well as educating lay people and healthcare people.

2) While we are all familiar with this info, most of the rest of the world isn't. Giving people basic info isn't milking. Tens years ago all this stuff was helpful to me. All of the new long COVID people will find it equally helpful. The real problem is that lack of progress in 10 years.

3) I don't find this book rambling. It clearly lays out what we know about causes and treatments. The organizational structure is explained in both the table of contents and the Introduction. There's even oodles of references if you want further research. It is written for a lay audience and does a good job speaking to that level. It includes patient stories and sums up the state of knowledge in an easily intelligible way.

I strongly recommend.

 

[LINE]

Not to be an adversary but I think most overlook the adrenals as being "tired" - Adrenal activity is quite important for homeostatic properties. Most understand cortisol as being the primary hormone secreted but there are many more. The purpose of the hormones is to keep the system in check.

Cortisol is a primary hormone and is involved in a number of inflammatory responses. Adrenals are triggered by stress and that stress could be emotional but is also involved in biological stress. Many published studies have proven that infections and toxins are involved in adrenal responses, these are biological stressors. They knew this in the 1950s.

When the adrenals are constantly stimulated due to the stressors, they become tired. The output becomes diminished then other issues begin to set in. Hans Selye outlined this and categorized adrenal stress into 3 categories, Alarm, Resistance and Exhaustion.

I went into the exhaustion stage many years ago and was able to recover by using specific nutrients. For instance, without adequate Vitamin C, the adrenal glands begin to shrink. Pantothenic acid (Vitamin B5) is another vital nutrient for adrenal health. And of course, I used a number of other key nutrients.

 

[kushami]

I was able to get a free version of this book. I would not recommend others to buy.
It's a typical orthostatic intolerance (OI) guide that you can find in many other places. The same old story about salt, compression, drug profiles (pyridostigmine, mestinon, etc.), yada, yada, yada. The only thing probably worth some attention are the case studies presented at the end of the book.

I would expect a new publication on OI to bring new information that we already don't know, specially with this being studied so much after Covid-19. But then when you get to the chapter on what causes it, the author is like "The answer to this question is not well understood", proceeded by rambling.

This feels like someone milking more money from sick people.

As far as I know, this information isn’t available in one place. You can certainly find it for free by consulting various sources, but the advantage of this book is that it is all in one place.

Also, many sources only refer to POTS. Advice for POTS and other types of OI often overlaps, but anyone new to the topic won’t know that. I know my diagnosis was held back for ages because every time I searched my symptoms, I came across information on POTS, and I knew I didn’t have tachycardia, so rejected that avenue.

I don’t really need this book now, but if this title had popped up four years ago when I first stumbled onto the term “orthostatic intolerance” I would have snapped up a copy and found it invaluable.

The book doesn’t claim to offer any new insights, and the blurb and endorsements refer to it being Dr Rowe’s collected wisdom on diagnosis and treatment.

Perhaps you came to the publication “cold”, and thus did not read the description of the contents first. In that case, I can see how you would be disappointed, but this book was written for a different purpose.

I wouldn’t expect a guide to living with a medical condition to dig into the causes or latest research, because if you think about it, those things are irrelevant to the nitty-gritty of increasing your salt intake or wearing compression tights.

If you want to learn about the latest research and hypotheses regarding causes, which is always interesting, I would suggest searching PubMed or watching Dysautonomia International conference lectures. Edited to add: Members here often post research summaries too, which is much appreciated.

Anyone interested in purchasing the book can review the sample pages on Amazon, including the table of contents, references and index. This should give a good idea of what the book covers and the style of writing.

I would not suspect a gentle, kind doctor and a university press of “milking” patients. There are POTS clinics out there run by people with no research or clinical credentials charging exorbitant amounts for their secret cures.

Asking US$22.95 for a book that collects useful info on a topic in one place hardly compares, even if it rambles a bit.

 

[kushami]

Dr Rowe’s bio (scroll down):
https://profiles.hopkinsmedicine.org/provider/peter-rowe/2704456

 

[kushami]

I used to be a non-fiction editor (copy editor in US parlance), so when I get a copy of the book I will write a review here, and I won’t hesitate to say if the writing quality or organisation could be better. We editors are an opinionated bunch

My dad, a retired newspaper sub (sub-editor), still dines out on the story of two subs on the late shift coming to blows over an apostrophe.

 

[wabi-sabi]

My dad, a retired newspaper sub (sub-editor), still dines out on the story of two subs on the late shift coming to blows over an apostrophe.

I would love to hear that story!

I might even buy his book myself, just because (as you said) it brings the info together in one place instead of having to search the internet.

Looking forward to your review!

 

[wabi-sabi]

I just bought the book. I figured even my unemployed self can afford $25 for a book. It is currently backordered through Johns Hopkin Press. By the time it arrives I will have forgotten that I ordered it, so it will be a nice surprise.