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Friday, September 27, 2024

Two New Orthostatic Intolerance (OI) Resources to Help Patients & Doctors


Dr. Peter Rowe, MD, of Johns Hopkins is a renowned specialist in pediatric ME/CFS and Orthostatic Intolerance (OI) aka dysautonomia and is recognized as one of the most knowledgeable experts in the world. He directs a growing clinic at Johns Hopkins Hospital in Maryland: Chronic Fatigue Syndrome (CFS) program at Johns Hopkins Children's Center. This has expanded quite a bit from the days when it was just him, and he answered his own phone!

New Book

Dr. Rowe's General Information Brochure on Orthostatic Intolerance and Its Treatment has long been a go-to resource for patients around the globe - I've linked to it many, many times here in this blog!


That valuable information has now been expanded and updated into a book: 

Living Well with Orthostatic Intolerance: A Guide to Diagnosis and Treatment by Dr. Peter Rowe

It is available from:

Johns Hopkins University Press, and

on Amazon

(all book proceeds help to support the clinic.)


New Webinar

Dr. Rowe has been conducting medical education webinars, to help train medical professionals in caring for children, teens, and young adults with ME/CFS. The series is called, Evidence-Based Pediatric ME/CFS Medical Education Webinar series. The first two webinars are available online (links to YouTube):

1 - Evidence-Based Pediatric ME/CFS

2 - Pediatric Orthostatic Intolerance: A Focus on Management

These webinars are SO important. What the ME/CFS patient community needs more than anything is for doctors to become better informed and educated. Even once ME/CFS becomes a standard part of the curriculum in medical schools (and we're a long way from that now), there are millions of medical professionals already in the field who don't understand or even recognize ME/CFS.

So, feel free to watch these videos yourself, but also, PLEASE, share these webinars with your doctors and other medical professionals.

A huge thank you to Dr. Rowe who has devoted his life to our patient community and has helped so many young people in his many decades of working in this often-ignored field. 


Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

Saturday, September 14, 2024

Relaxing & Peaceful Nature Videos


Oh, my gosh--I can't believe I haven't written a new post here in three weeks! I did send a newsletter out, so that's a win. Sorry about the gap in posts. Life's been very hectic, and my energy and stamina are still really low after getting COVID in early July. I am struggling to keep up with everything (and not doing very well at that). I have some new treatments to try after a phone appointment with my doctor this week to review recent labs, so I'll fill you in a couple of weeks on what they are and if they're helping.

In the past month, we traveled to see our son for his 30th birthday (highlight: he's working full-time and says he feels the best he's ever felt in his 20 years with ME/CFS!), attended a graduation party, took a 4-day camping trip, and just last weekend, attended a wedding about five hours from here. The wedding weekend was wonderful, filled with our closest friends, but exhausting, as you can imagine! This week was two doctor's appointments, a book group meeting, and a Zoom meeting with our local support group. We are currently packing for another, longer camping trip, and I can barely keep my eyes open!

So, I thought I would just quickly share the vlog I made from that last camping trip--it was a very relaxing few days, and the vlog includes photos and videos of nature--lakes, waterfalls, birds, and more. It's all very serene and peaceful. Remember, as I explained in my book (and here on the blog), even just looking at pictures of nature is beneficial to your physical and mental health, so enjoy!

You can watch the video on YouTube or below:


I'm really wiped out today, but once we leave on this trip, I'm looking forward to some complete downtime, with nothing to do but lie in my lounge chair and read or stare into a campfire and be surrounded by nature.

I hope you enjoy the vicarious camping trip in the video!

How do YOU enjoy nature?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter and Instagram.