Recent Research on Orthostatic Intolerance (OI) in ME/CFS, Long-COVID & EDS

My browser has about 40 open tabs right now (!), and many of them are recent news or research on ME/CFS, long-COVID, and related conditions that I want to share with you. If only there were more hours in a day (or I didn't have to waste two of them napping every day)! So, here, I've compiled some fascinating recent (in the past few years) research into Orthostatic Intolerance in these conditions.

Orthostatic Intolerance or OI is an integral part of ME/CFS--over 97% of ME/CFS patients have some form of OI (and many of those with long-COVID, EDS, fibro, MS, and Lyme, too). So, if you have ME/CFS, then you do have OI, too, though you may not be aware of it. OI is an umbrella term encompassing several conditions where the body cannot maintain a steady blood pressure and/or heart rate when upright (standing or even sitting up). The two most common types of OI in ME/CFS are NMH, where the BP drops when you are upright, and POTS, where the HR goes up when you are upright. Rarer forms of OI--like where the BP rises when upright or BP and HR jump all over the place--also exist. The good news is that OI is fairly easy to treat & often brings dramatic improvement! It's what got my two sons back to school full-time when they were young and what allows my son and I to live fairly active lives now (he starts a full-time job next month!).

This detailed blog post about OI includes more information on OI, including all the basics of diagnosis and treatment, plus our own successful experiences treating it. In addition, I wrote a 2-part article for the ProHealth website on OI that is perfect for sharing with doctors because it is short and to the point and includes scientific references at the end, in case your doctor wants to look into it further. Part 1 is Diagnosing OI in ME/CFS and Part 2 is Treating OI in ME/CFS (both are relevant to all conditions mentioned above that include OI). 

 

With that basic information in mind, here are some fascinating studies that bring further light to the severe impact that OI can have on us patients. Many of these studies deal with finding impaired blood flow to the brain, causing severe symptoms, during even mild orthostatic (upright) challenges in ME/CFS patients. Note that any research on OI in ME/CFS will generally also be applicable to those with long-COVID, Ehlers-Danlos Syndrome (EDS), and often fibro and Lyme also.

• An interview with Dr. Peter Rowe, MD, Johns Hopkins (renowned OI in ME/CFS expert) about OI, brain blood flow, and venous congestion in ME/CFS. In this video, he discusses some of the studies listed below.
• From 3 months ago, a video presentation from Dr. Rowe on Updates on Orthostatic Intolerance in EDS. 
• Study (2023): Worsening Symptoms is Associated with Larger Cerebral Blood Flow Abnormalities During Tilt Table Testing in ME/CFS. This clearly shows that OI = less blood flow to the brain = worse symptoms, showing what a serious impact OI has on ME/CFS patients.
• Study (2020): Cerebral Blood Flow is Reduced in Severe ME/CFS Patients During Mild Orthostatic Stress Testing. Typical tilt table testing involves starting from a horizontal position and continuing until the patient is at a 70% standing position for at least 30 minutes. Many more severe patients can't tolerate that kind of test, and even moderate patients will crash badly after it. This study clearly showed that in a group of severe ME/CFS patients, a short test of only 20 minutes, going up to only a 20% position (the equivalent of sitting up in bed), provoked the same reduction in blood flow to the brain.
• Study (2020). Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe ME/CFS Patients. In a study of 100 severe ME/CFS patients (37 of whom also had fibro), there was a 24.5% reduction in cerebral blood flow just from sitting for an hour, even when heart rate and blood pressure didn't show significant changes. This shows that merely sitting can provoke a severe reaction and symptoms and that OI could potentially be diagnosed from a sitting test in severe patients who can't tolerate a standing test or full tilt table test. It also shows that severe effects are caused from being upright (OI), even if BP and HR don't show it.
  
• Paper in Science (2021). Cerebral Blood Flow Remains Reduced After Tilt Table Testing in ME/CFS Patients. This showed that the effects of being upright remain even after the patient is sitting or lying down--something that every patient who crashes after having to stand for a period of time knows all too well!

I find all of these studies absolutely fascinating because:

• OI can be difficult to diagnose, as I described in Challenges in Diagnosing OI, so measuring cerebral blood flow (blood flow to the brain) provides an alternative testing method that may be more accurate.
• These tests--showing reduced blood flow to the brain--show very clearly the severe impact that OI (and being upright) can have on ME/CFS patients, in obvious, quantifiable terms that doctors can understand.
• These studies show how even minimal orthostatic stress--sitting or even lying down at a 20-degree upright angle--can provoke severe symptoms that linger. This is something patients know instinctively, but it's nice to have proof to show doctors!

Again, the good news is that Orthostatic Intolerance is very treatable, and treating OI effectively can provide significant improvement in all symptoms! Finding exactly the right combination of OI treatments for each person can be tricky. It requires patience and persistence! For instance, there are almost 40 different beta blockers alone, plus many other treatment options, and they all work differently for each person. But it is well worth the effort to keep trying until you find what works for you, as my son and I have.

Have you tried treatments for OI yet? What has worked for you?

Please leave a comment below.

You can also connect with me on Facebook and Twitter and now on Instagram, too!

30 Great Book Recommendations for Spoonies

I thought many of you would enjoy a books video I made this week, featuring 30 different books--all of which I've enjoyed--that were either written by a disabled author or feature a character with some sort of illness or disability. There is something here for everyone! The books I included cross all types and genres, fiction and nonfiction. There are even quite a few books by or about ME/CFS (including great, fun novels!). If you struggle to read these days because of your illness, I listened to many of these on audio, and there are lots of middle-grade and YA novels included here, too, which are often easier to read but are just as well-written as adult novels. 

You can watch the video on YouTube or I will include it here:

 

This week was absolutely crazy for me. I usually try to keep my schedule light, alternating days with something out of the house with quiet recovery days at home. This week, I had something (mostly social engagements, which are tiring!) every single day, and two things on Tuesday. I took my elderly book buddy out for lunch, had a game night with friends (out in the evening!), went to a friend's mom's memorial service (during naptime!), attended my book group, and had massage therapy today. Whew. By now, on Friday evening, I'm pretty tired, but ... still not a single crash in 2024! That's mostly thanks to treating thyroid dysfunction (very common in ME/CFS) last year and switching to a very strict diet that finally got my chronic yeast overgrowth (also common in ME/CFS!) under control. I'm very grateful for all I am able to do now, though I'm ready for a quiet holiday weekend at home.

How was YOUR week?

 

How are you doing?

Please leave a comment below.

You can also connect with me on Facebook and Twitter and now on Instagram, too!

Movie Monday: The Holdovers

There are a few Best Picture Oscar nominees that I've had my eye on, waiting for them to be available on the streaming services we have, and this weekend, I noticed that The Holdovers was available on Amazon Prime. It was just as good as I'd heard, funny and warm.

Paul Hunham, played by Paul Giamatti, is a grumpy, strict ancient civilizations teacher at a private boys' boarding school in 1970 Massachusetts. This Christmas, he's drawn the short straw and is assigned to remain at the school with the "holdovers," those students who must stay on campus for the holiday break. He had no plans to go anywhere anyway; he rarely leaves campus. Initially, five boys are left in his care, three teens and two younger boys, but eventually, there's just one boy left with nowhere to go for the holidays. Angus Tully, played by Dominic Sessa, is an older teen boy who'd been bragging to his classmates that he was traveling to St. Kitt's for the holiday. At the last minute, his mother calls and says it would be best if it were just her and her new husband on this trip, and Angus is left in the empty school with Mr. Hunham. The two actually have some things in common, as Angus is also prickly and unpopular with his peers, though Mr. Hunham thinks Angus is just another spoiled rich kid. Rounding out the sparse holiday crew at school is Mary, played by Da'Vine Joy Randolph, who cooks at the school and is deeply grieving the loss of her son, a past student who died in the Vietnam War. They're a glum, depressing trio, feeding off each other's misery, until they begin to get to know each other better. Secrets are revealed, their broken, frozen hearts begin to thaw, and their holiday turns around. 

We really enjoyed this movie. It's wonderfully written, and the central actors are all outstanding in their roles. It's very funny in spite of some serious topics, like loss and grief, underlying the plot. Surprising twists that we didn't expect keep the narrative moving. And this movie has so much heart! The emotions feel very real and authentic. It's really a beautiful story of people opening up and finding connections they sorely needed. We both enjoyed it very much. 

The Holdovers is currently available on Amazon Prime or for a fee on several other services.

Chronic Illness Vlog: Bump in the Road But Still Doing Well!

Life has been hectic lately, but I did manage to record a vlog last week. My chronic illness vlogs are a little peek into my life with ME/CFS, an honest view of what my life with chronic illness is like on a typical week (though it hasn't been typical lately, with all the travel!). As you'll see in the vlog, I am still crash-free in 2024 (yay!), but I had a string of days last week when I was feeling run-down and had very low energy. I figured it out (yeast again - duh), and getting stricter on my diet helped me get back on track.

You can watch the video on YouTube (the link to YouTube also includes all of my notes below the video, with links to other information you might find helpful that I referenced) or I will include it here below:

 

 As always, I've also incorporated some nature videos into the vlog for your peace and enjoyment.

Our son (the one with ME/CFS for 20 years) and his girlfriend have been here all week and are currently packing their rental truck. They leave early tomorrow morning on a month-long road trip across the US! They've been planning this for years, and we're so excited for them. We'll be guinea pig sitting while they're gone, and then they both start new jobs when they return in June--exciting times!

How was YOUR week?

 

How are you doing?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Recent Webinar: Comparing Immunological Signatures Between Long-COVID and ME/CFS

Earlier this week, I participated in a webinar hosted by the Solve ME organization (which, by the way, has loads of great resources for patients and for doctors, in addition to leading advocacy work and funding research). It was called Comparing Immunological Signatures Between Long-COVID and ME/CFS, which was of great interest to me since earlier research has indicated that immune dysfunction is at the heart of ME/CFS, and my own experiences have certainly borne that out.

You can check out the schedule of additional upcoming webinars here. On their YouTube page, there is a full playlist of all of their past webinars (see the playlist in the right sidebar). And on that page, you can watch the one I just watched, or I'll include it here:

It's an interesting talk, and they've already had some fascinating findings from the first phase of the study, looking at long-COVID patients. Much of it will be familiar to those with ME/CFS, as many of these are well-understood characteristics of our disease.

You'll hear toward the end the question that I asked, though unfortunately, the researcher didn't really understand what I was trying to get across (my fault - hard to explain through a typed comment). I do plan to follow-up with an e-mail to make sure they understand that earlier research showed a change in immunological signature between patients with ME/CFS less than three years and those sick more than three years, so this could confound their data in trying to compare long-COVID patients (by definition mostly less than three years) and pre-2020 ME/CFS patients.

They are still recruiting healthy controls and those with ME/CFS (pre-2020), so I'm sending my info to them to volunteer. Unfortunately, you have to be able to go in-person to the clinic in NYC (though if you live in the NYC area, within 50 miles of the clinic, they can provide a home visit instead).

Finally, a quick apology for not posting much here on the blog lately! I traveled a lot in April and have been pretty run-down the past two weeks. I still haven't had a full "can't get off the couch" crash since the start of the year 😀 but my energy was so low recently that I had trouble writing much. AND, we leave again tomorrow morning for my mom's for Mother's Day and her birthday. Next week, our son and his girlfriend will be staying with us and THEN, life should slow down for us for a while, and I can get back to more regular blogging.

TV Tuesday: The Tourist

While we're mostly watching TV shows on cable right now, we do have a few streaming shows in the mix, and one of our favorites is The Tourist, a twisty, action-packed thriller about a man with amnesia.

As the first episode opens, a man, played by Jamie Dornan, is driving through a desolate stretch of Australian desert, listening to the radio, when a tractor-trailer truck comes out of nowhere and hits him violently. He wakes up in the hospital with no memory of ... well, anything. A police officer named Helen Chambers, played by Danielle McDonald, comes to his hospital room to question him about the accident, but he doesn't remember his name, what happened hours ago, or anything at all about his life before he woke up in the hospital. His only clue is a paper he finds in his pocket, as he's leaving, with a date and time and the name of a diner written on it. He goes to the diner for the meeting, but nothing jogs his memory, and he doesn't recognize the woman who is there, though he learns that his name is Elliot. And then ... bad things happen! It's clear that someone--or maybe more than one person--is trying to kill him, but he doesn't know why. Elliot must try to protect himself while striving to learn who he is, though maybe he doesn't really want to know about his life before this. Helen is kind and is intrigued by this mystery man and wants to help him. And she has her own problems, with a controlling husband-to-be.

I know that's a pretty non-specific description, but I don't want to spoil anything. In this show, the unexpected twists and surprises come fast and furious right from the first episode, making it both suspenseful and engrossing. The viewer doesn't know any more than Elliot does. It's non-stop action--and quite a bit of violence--but the show is also funny, warm, and sometimes sweet. Helen is not an experienced police officer nor a detective, but she wants to help. You'll be rooting for Elliot and Helen, as they try to stay safe from killers and learn more about who he is. We are now watching season 2, which takes place in Ireland, and the secrets and surprises keep coming!

The Tourist has two seasons, with six episodes each, and is currently airing on Netflix.