ME/CFS and Long-COVID New Research Summary

It's been a long time since I wrote one of these research updates, but I've got about 20 open tabs in my browser with exciting studies on ME/CFS and long-COVID that I want to share with you! 

The research into myalgic encephalomyelitis and chronic fatigue syndrome has been encouraging for many years, as scientists figure out more and more pieces of the puzzle. However, the high incidence of long-COVID and its connection to ME/CFS has resulted in an enormous increase in both research interest and funding. Expect to see a whole lot more coming soon!

In the meantime, here are some quick overviews (with links to more details) of research into ME/CFS and long-COVID that I found interesting and encouraging:

 

Orthostatic Intolerance:

This article, Why the 10-Minute NASA Lean Test?, by Dr. Lucinda Bateman, one of the top ME/CFS clinicians in the world, describes a series of studies her clinic has done in the past few years on Orthostatic Intolerance (OI) in ME/CFS patients. Her summary (at the link) is easy to understand and fascinating. As previous studies had indicated, ME/CFS and long-COVID patients who definitely had OI did not always meet the official criteria during the standing/lean test. Her team pointed out, though, that even ignoring the numbers, it was clear these patients did have OI from their symptoms and reactions during the test. They also discovered a new measure (the ratio of pulse pressure to systolic blood pressure) that was more accurate in identifying OI in the ME/CFS and long-COVID patients.The differences between newer patients and those of us who've had it longer are interesting, too.

When I researched OI for the two articles I wrote for the ProHealth website on the topic, I came across a study showing that the standing test is still more accurate than a tilt table test (and far less expensive and easier to get done), but as I explain in the article, you may need do the standing test multiple times to get accurate results and your doctor should always take into account your symptoms while standing and not just the numbers. The original articles have been taken down (along with all articles on specific diseases), but you can read copies I made here: Part 1 - Diagnosing Orthostatic Intolerance in ME/CFS, and Part 2 - Treating Orthostatic Intolerance in ME/CFS. I know the links don't work in these articles, but they both still contain scientific references at the bottom that your doctor can look up for more information, so they're ideal to print and share with your medical team.

 

Identifying Genes in ME/CFS:

1. It has long been known that ME/CFS has both infectious and genetic roots, proven through several studies of families. More than a decade ago, I participated in a study to identify the exact genes involved in ME/CFS, but that study ended when it lost funding. Finally now, many different research organizations are digging back into that problem--with newer technology--and trying to identify the genes that make someone more susceptible to ME/CFS.

In his blog/newsletter, ME/CFS Research Review, Simon McGrath reports, New Study Links 14 Genes to ME/CFS. This study has not yet been published but has been submitted to a scientific journal and is being considered for publication. It used existing genetic data from the UK BioBank and analyzed it in a new way to identify 14 genes that seem to be linked to ME/CFS, paving the way for a possible way to identify patient sub-groups. 

Much of the article at that link is quite technical (far too much in the weeds for me!), but if you scroll down to the bottom, the heading What Do the 14 Genes Do and Can They Explain ME?, it's pretty interesting and easy to understand, highlighting areas of autoimmunity, energy metabolism, sleep, and infection. You might also be interested in the two sub-headings before that: Success with Other Illnesses and Issues with the UK Bio Bank Sample.

 2. Another genetic study of ME/CFS and long-COVID was just published. It is a systemic review of ALL genetic studies published to date on ME/CFS and long-COVID (that includes 23 ME/CFS studies and 71 long-COVID studies, which shows you how long-COVID is affecting the state of research!). You can read a summary (and further down the page, an abstract) of this study in the ME Association's weekly Research Round-Up, October 4-10 (there's also an audio option at the link if you prefer to listen). 

These kinds of review studies can be very helpful in pulling data together. This review found a range of common genes affecting both ME/CFS and long-COVID, including one involved in controlling blood pressure and two involved with immune function. The Research Round-up at that link also includes brief summaries of studies of long-COVID dealing with immune function, potential causes, MCAS, and a potential biomarker.

That's all I have the energy for writing about today--and probably all you have the energy to read, as well! I will try to get back to more frequent updates, both to stay up-to-date and to keep my browser from getting so cluttered!

If you are interested in current research of ME/CFS and long-COVID, I highly recommend checking out the ME Association's weekly Research Round-Up. I linked to the Oct. 4-10 summary up above, and you can see their October 11-17 summary, which includes 7 new studies on ME/CFS and 15 new studies on long-COVID.

I've also been doing some freelance writing, helping Open Medicine Foundation to write patient/layperson summaries of some of their new research projects. Wow, there is some really exciting research coming up! They'll be sharing those in November, and as soon as they're published, I'll share them here with you, too.

Interview on Chronic Illness and ME/CFS

Last week, I was interviewed by my local independent bookstore! They were very understanding about my limitations and the potential issues with me doing an in-person event in a crowded store, so they used me as a test case for a new process: prerecording an interview on a videoconferencing app and then sharing it on their Facebook page. It worked out very well! Though I am still very slowly working my way out of this months-long relapse, I was able to sit up long enough for a half-hour interview in my own dining room!

The interview covers living with chronic illness in general and my book, Finding a New Normal, but she also asked me quite a lot of questions about ME/CFS specifically. She had just recently interviewed Meghan O'Rourke, author of The Invisible Kingdom, who also has ME/CFS, so she knew a bit and was interested to learn more. I mentioned the connection with long-COVID as well. That provided a great opportunity to build awareness of our oft-misunderstood illness! We also chatted about the writing process and about books and reading.

You can watch the short interview on the bookstore's Facebook page (sorry, this isn't one I can imbed here).

Hope you enjoy the interview!

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.

Weekly Inspiration: Living in the Moment

Chronic illness is filled with challenges, and it can be difficult--or even feel impossible--to be happy in the midst of a life ruled by limits and restrictions. But it is possible, and I wrote a whole book with ideas on how to improve your life with chronic illness, embrace small moments of joy, and find happiness within your limitations. I'm always interested in learning more, though!

I came across this TED talk called Want to Be Happier? Stay in the Moment by researcher Matt Killingsworth who studies happiness. It's a short 10-minute talk, but I found it very interesting and thought-provoking. Matt studied data from an app where people rate their happiness at different times of day and say what kind of activity they are doing and whether their mind is wandering. The results are fascinating. You can watch the talk below (or watch at the link):

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He talks a lot here about staying in the moment and the impacts when your mind wanders. This is something I definitely struggle with. In fact, while watching this video and trying to listen and enjoy it, I realized my mind kept wandering! I was thinking about what I'd write in this post, what I wanted to get done today, how bad my aches are today, and how to rearrange the shelf of cookbooks in my kitchen. And that was all in just 10 minutes!

On the other hand, as I was getting ready for bed last night, I realized I was feeling very happy, maybe even euphoric! I thought about our evening. Because of my months-long relapse, I haven't been able to go out much or see friends very often. Good friends invited us over for dinner last night a few days ago, but I didn't want to schedule something, have them plan, shop, and cook, and then have to cancel. So, I texted them yesterday morning and said, "Hey, I'm feeling OK today. Do you guys want to come over for takeout and a campfire?" They did, and we had a wonderful evening catching up with them, eating delicious Thai food, and enjoying a roaring fire on a beautiful fall evening. Several things made me happy last night: seeing friends and enjoying good conversation, good food from one of our favorite restaurants, and spending time outdoors, which always lifts my spirits. And all while I was reclined in my lounge chair at home! But now, after listening to this talk, I am realizing that I was also fully engaged in the moment last night, with little mind wandering. 

I think I need to focus more on this concept of mind wandering because even when my body is incapacitated and lying on the couch, my mind is constantly thinking about other things. Even when I'm watching TV, I'm usually checking e-mail or scrolling Twitter (a new bad habit, thanks to finally having a smart phone!), or glancing at the newspaper. (One thing I love about reading a book is that you can't do other stuff; you have to focus, which allows you to lose yourself in the story.) With chronic illness, we have the added challenges of constantly assessing our current condition: Do I need to eat? Is it time for meds? What caused this crash? Did I do too much yesterday? What will I be able to do tomorrow? Some of that is necessary, but I'd like to reduce all this mind wandering, especially when I'm doing something that should be enjoyable!

I want to try to focus more on not just living in the moment but recognizing and enjoying the moment, even if my happiness is from simple joys, like lying in the sunshine on our deck, looking at fall foliage, or reading a good book.

How about you?

Do you struggle with an overactive mind?

How do you help yourself to live in the moment?

Let me know in the comments below.

Chronic Illness Vlog & Lake Vacation

My ME/CFS is still in a relapse--10 weeks now. It's getting old. I am definitely better off than I was at my worst but still nowhere near my normal level of functioning. I still have flu-like aches every day, so I am still mostly couchbound, though I have been able to leave the house for short errands. I still can't tolerate even a short walk (with treatments for OI and immune dysfunction, I was able to walk for up to an hour without crashing!) or even sitting up for long. I'm typing this from a reclining lounge chair out on the deck to enjoy this nice fall day!

But I got a huge treat last week--a long weekend at a beautiful lake house in the Poconos in eastern Pennsylvania with my husband, our two adult sons, and their girlfriends. I've been planning this since last Christmas and was worried how I would handle it, but I managed OK. Even the couch in this house had great views of the lake! It was just what I'd hoped for--just some relaxed vacation time with our sons. The last family vacation we had together was in 2019. 

So, my latest vlog includes video clips from home last week, as I rested and tried to get ready for the trip, and then some videos and photos of "our" beautiful lake house last weekend. Studies show that just looking at pictures of nature has physical and mental health benefits, so enjoy!

You can watch the video on YouTube or I will imbed it here. 

Either way, leave a comment and tell me how YOUR life has been lately!

Two Chronic Illness Vlogs: Crashes and Improvements (and Crashes)

I'm now in week 8 of this severe relapse of my ME/CFS and still unsure what is going on behind the scenes with my immune system. It is very, very unusual for me to be this sick for this long. So, I am still unable to write much (or sit up much). But I have continued recording weekly vlogs. These are short video clips from each day (often lying down!), for an honest view of my life: the good, the bad, and the ugly. I have two here to catch up on:

Chronic Illness Vlog 9-25-22: Still Badly Crashed ... But an Outing!

Two weeks ago was a Very Bad Week. I was flat on my back on the couch (or in bed) every single day and wracked with severe flu-like aches constantly. I watched a lot of old Grey's Anatomy episodes. By the weekend, I was no better but was determined to get out of the house and out of my rut. You can watch the vlog on YouTube, or I will also include it below: 

Chronic Illness Vlog 10-2-22: Starting to See Improvements!

Last week was considerably better for me, though still nowhere near my normal functionality. But I was able to get out of the house at least briefly every day - what a thrill! I even got out for a special occasion on Friday. It was a pretty good week, compared to being couchbound for the previous three weeks. But then--you guessed it!--I did too much on Sunday (at the end of the video), so I have been back on the couch Monday and Tuesday of this week. Today was especially bad. You can watch the vlog on YouTube, or I will also include it below:

 

So, that brings you up to date! I am nearly flat as a type this brief post (and typing very badly). We have rebooked this week's camping trip three times already, due to bad weather, and plan to head out tomorrow afternoon for a couple of days at a local state park. Wish me luck!