Excellent Medical Explanation of Exertion Intolerance (PEM) in ME/CFS & Long-COVID

I was crashed today, for mysterious reasons only my body understands, so I settled in to watch a video I bookmarked ages ago: Dr. Todd Davenport speaking on Insights on the Physiology of Post-Exertional Symptom Exacerbation (PESE) in 2022 at the San Diego Pain Summit. PESE or PEM is the hallmark symptom of ME/CFS and now, long-COVID, but so few doctors know about it or understand it. This conference seems to be focused on medical professionals and especially physical therapists, and Todd's talk provides a much-needed medical explanation to this audience as to why exercise--that may be good for other conditions--is harmful to those with ME/CFS and long-COVID.

PESE is such a far better term than Post-Exertional Malaise (PEM). Anyone who has spent days, weeks or even months pinned to their couch or bed simply from taking a walk or going to the store or attempting to make a meal for themselves knows that "malaise" is such an inadequate word for the total decimation we experience after even mild exertion.

Todd's talk at the Pain Summit is a fascinating exploration of the medical and physiological basis for PESE/PEM. He shows data that proves that the PESE experienced by ME patients is completely different than the way that deconditioned people react after exercise. This would be excellent to share with any medical professionals, including doctors who suggest graded exercise therapy (GET) and physical therapists who work with any patients with ME/CFS or long-COVID. Todd has also included the research study references that back up his data, for anyone who wants to learn more (or for doctors who don't want to watch the video--I recommend copying his scientific references and printing the list for your own doctors or PTs).

You can watch Todd's excellent presentation, Insights on the Physiology of Post-Exertional Symptom Exacerbation (PESE), on YouTube (with the references listed below in the notes - click on "... more" below the video). (Note that I normally include videos in the body of my blog posts, but this one is unavailable for embedding that way, so it has to be watched at the YouTube link.)

If you have ME/CFS or long-COVID and are going to physical therapy for any reason, like an injury or rehab after surgery (hopefully not as a "treatment" for your disease), I also recommend printing my Guidelines for PT for Patients with ME/CFS or Long-COVID (it includes a PDF document you can print and take to your PT), which will educate your physical therapist on the basics of PEM/PESE and how to work with you safely, without exacerbating your symptoms.

I had the pleasure of "meeting" Todd (virtually) when we were both invited to speak in a webinar hosted by Physios for ME, a UK organization of physical therapists who work with ME patients, called Heart Rate Monitoring for Post-Viral Fatigue Syndrome and Myalgic Encephalomyelitis. Todd spoke during Part 1 which explained the medical/scientific basis for PEM/PESE and the usefulness of heart rate monitoring, and I spoke during Part 2, which featured patient experiences using a heart rate monitor.

You might also find useful my post on Heart Rate and Post-Exertional Crashes, which explains in simple terms why monitoring heart rate can help to prevent crashes and how to calculate an estimate of your personal limits, and my article, Using a Heart Rate Monitor to Prevent Post-Exertional Malaise in ME/CFS (it also applies to long-COVID, though I wrote it before 2020).

I hope you find this information helpful for you and your doctor.

Do you use a heart rate monitor?

Do you practice pacing, staying below your anaerobic threshold?

Please share your own experiences in the comments below.

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

2024 Mid-Year Update: Yeast, Diet, No Crashes!

 

While I often mention how I'm doing at the start of blog posts on other topics and in my chronic illness vlogs, I thought it was time for a more comprehensive update. Besides, we just passed the halfway point for the year (!!), so the timing is right. The last time I focused on my own health here on the blog was My 2023 Year in Review back in February, so I'm due for an update!

NOTE: My updates below refer to ratings of how I feel. For details on how I simply track how I feel on a calendar, check out my post, My Progress in 2020 and Goals for 2021 and scroll down to My Health in 2020 and below that, the section called "How Do I Know This?" Or you can watch my short video, Chronic Illness: Tracking How I Feel, Symptoms, and Treatments. I use a 1 to 5 rating, where 1 is good and 5 is mostly bedridden. At the end of each month, I tally up the average of how I felt and also the % of time I spent crashed (a 4 or 5 on my scale). I also rate my exertion each day on a 1 to 5 scale.

 

How I Felt the First 6 Months of This Year

Simply put ... great! It felt like a miracle after my very difficult last three months of 2023, but I've been greatly improved since the start of the year (that's not coincidence--see below for what's making a difference). Most amazing of all: 

I have not had a single crash day in 2024 so far!

For comparison, last November I spent 50% of my time severely crashed, mostly couchbound, and unable to do much of anything. My very few worse days in 2024 have been rated 3--feeling a bit run-down but still able to function. And those were few and far between and always related to yeast overgrowth (see below). 

Even more incredible is that I have been very active so far this year--able to take walks most days, get back into a strengthening routine, go on long (for me - over an hour) hikes with my husband, and even go shopping. I danced at a wedding last month! And with all of that activity, I have not even once worsened from exertion intolerance. It's truly stunning to me.

My rating (1 to 5, with 5 being worst) for the past 6 months has been a steady 2.2. I haven't been that good since 2017. Last year, my average was 2.5 and 2.9 in 2022. 

It's all been good news, and it's been such a joy to be living my life again, able to get together with friends, enjoy my family, and get caught up with work and home.

So, that leaves the big question ... WHY?

Enjoying a 90-minute hike two weeks ago!

Factor #1: Normalizing Thyroid Function

I spent all last year working with my primary care doctor to find the best treatments for my hypothyroidism, after we realized that my thyroid labs were about as low as they could get. It required a lot of trial and error--and patience and persistence--to get new labs every two months, adjust the treatments, and wait to see the effects. But it was well worth the effort. By fall of 2023, my numbers were finally in the normal range for both T3 and T4, I had settled into a stable dose of two medications, and my energy had improved. I then added iodine, which is essential to thyroid function, which helped me to further improve. 

Most surprisingly (to me) was that I lost about 20 pounds last year just due to treating thyroid dysfunction. I made no other changes to diet or exercise (I was actually less active for other reasons explained below)--the weight just slid off me, bringing me back to my pre-illness (22 years ago) weight. What's interesting to me is that I had gained that extra weight gradually, a few pounds a year, even though I was eating a restricted, healthy diet and exercising as much as I was able. That tells me that my thyroid had been dysfunctional for many years, and we missed it due to not testing the right things.

I summed up all the lessons I learned in my post, Diagnosing and Treating Thyroid Dysfunction in ME/CFS and Long-COVID because thyroid dysfunction is extremely common in our diseases, due to endocrine dysfunction. 

 

Factor #2: Yeast Overgrowth and Diet Changes

As I said, by last fall, my thyroid function was almost normal and I had more energy ... but I was still badly crashed and very sick. The reason why was a mystery to me, and I tried everything that had helped in the past to no avail. For the last three months of the year, I had constant flu-like aches, a sign of immune activation and an indication that my ME/CFS was badly flared up. I had more energy, but I felt awful, and if I did anything at all, I got even worse.

Finally, in mid-December, I saw my functional medicine specialist and told her what was going on. I explained that yeast overgrowth was a chronic problem for me (and many others with ME/CFS, due to our immune dysfunction) but that I was already treating it. She asked me to pull my mask down and stick out my tongue and told me I still had visible thrush in my mouth. I was stunned because I take piles of probiotics every day, prescription antifungals daily, and thought I was eating a strict diet. She questioned me a bit about all of that and said that since nothing else was working, I'd need to get extremely strict with my diet--no carbs at all--in order to starve the yeast.

I was desperate, so I did as she said. She recommended a carnivore diet, which is just as it sounds: meat, fish, eggs (a little high-fat dairy is also OK but I'm dairy-intolerant). Within 10 days of changing my diet, those relentless flu-like aches finally disappeared (just in time for Christmas).

I stuck mostly with carnivore, with just a few bites of cruciferous veggies or avocado each day--what I called 97% carnivore. After three months of that, I transitioned to a more keto diet and have kept that up. For me, that means more veggies but still no grains, no sugars at all, and no starchy vegetables. I explain more about my experience with the carnivore diet in this video. Next week, I hope to post a new video, with brief explanations of the diets that are typically best for those with immune disorders like ME/CFS (paleo, keto, carnivore).

Unfortunately, the yeast overgrowth is still very persistent. I am still taking my maximum dose of prescription antifungals, a whole range of probiotics focused on my own gut testing results with the aim of controlling yeast, and herbals antifungals. And I still have to stick to a very strict diet. I was tired Sunday and Monday this week and realized it was again due to yeast overgrowth. I had "cheated" a bit: two cups of popcorn Saturday evening, a quarter-cup of blueberries Sunday. That's all it takes for the yeast to come back and thrive in me. It is barely kept under control with this diet ... but if I stick to it, it is. That's difficult for me, but I realize it is something I can control, and I'm grateful for that.

Since yeast overgrowth (aka candida) is extremely common in ME/CFS and long-COVID and often overlooked, I wrote a blog post about Treating Yeast Overgrowth/Candida that includes lots of different treatments to try (just updated this year).

That's how my year is going so far!

How are you doing this year?

Have you tried treating thyroid dysfunction or yeast overgrowth? 

Have any other treatments helped you?

Let me know in the comments below.

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

Spring Camping Vacation Vlog

The blog has been quiet because we were on vacation last week! I not only had no internet; we didn't even have cell service much of the time! We were truly off-the-grid, and it was very relaxing. I put together a travel vlog, loaded with videos and photos of camping, hiking, kayaking, reading, and lots of relaxing! Plus lots of great footage of peaceful nature scenes, to help YOU enjoy the restorative effects of nature, too.

We drove with our pop-up camper down to Virginia (about a day's drive south, so perfect for April) and visited two beautiful state parks there: Holliday lake State Park and Fairy Stone State Park. On our way back, we spent the weekend on Smith Mountain Lake with my college suitemate and her husband (also a college friend) and really enjoyed both the gorgeous setting and the company. Nothing like old friends!

You can watch the vlog on YouTube or I''l insert it below - be sure to turn up your volume to enjoy the sounds of birdsong, bubbling streams, and trees swaying in the wind:

As you can see, I am still feeling really great! As long as I get my 9 hours of sleep a night and my afternoon nap, I can be quite active during the day (9000 steps one day on this trip - a new personal record!). And I have still not crashed even once since the beginning of the year. For details on why,  check out my 2023 Year in Review post (scroll down to "What Helped").

Vacationing this way--in our little camper, our home away from home, on our own schedule--allows me to relax and enjoy a getaway.

Are you able to travel at all or enjoy a vacation?

What helps you?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

New ME/CFS Research Finding: Protein Disrupts Cells' Energy in Mitochondria

In a series of surprising twists worthy of a thriller and a bit of serendipity, researchers from the NIH's Heart, Lung, and Blood Institute (NHLBI) were studying genetic mutations in a family with cancer and ended up making an important discovery in ME/CFS research. It's a fascinating story, with excellent repercussions for ME/CFS patients, possibly leading to clinical trials in the near future!

One member of the family being studied, a 38-year-old woman, had a genetic mutation associated with the cancer that ran in her family. However, this woman (and none of her family members) had experienced worsening fatigue since she got mono (aka glandular fever) at the age of 16, including an inability to exercise. Sound familiar? As often happens, she'd never been diagnosed with ME/CFS, but clearly, she had all the hallmarks of our disease.

Rough outline of what these researchers discovered:

• Looking for genetic mutations responsible for cancer, they found a mutation in gene TP53. It was causing very high levels of a protein called WASF3 in the woman's samples but not in her siblings.
• The researchers did a literature search of WASF3, and guess what popped up? A little-known ME/CFS study, part of an effort by top ME/CFS researcher Suzanne Vernon, from 2011. She and her team had identified 227 patients with ME/CFS who were thoroughly examined and tested by top ME/CFS experts, creating an enormous set of data (which makes me wonder why the NIH ignored this fabulous set of samples and data when they recently published their "breakthrough" study of a measly 17 patients). The team published a paper that identified eleven different genes that were different in ME/CFS patients versus controls and specifically mentioned WASF3 as possibly being involved in the mechanism of fatigue and exercise intolerance.
• Finding that obscure paper, the NHLBI researchers kept digging and assessed other markers in the woman they were studying, compared to that 2011 ME/CFS paper.
• They also kept digging into the role of WASF3 and the effects when levels are high, as they were in both this woman and the ME/CFS patients studied.
• The researchers found that her muscle tissues had a lower oxygen consumption rate and reduced energy production.
• Next, they used RNA to reduce WASF3 levels in both her cells and healthy controls, and they saw mitochondrial (the energy engines in our cells) function improve across the board.
• Then the researchers produced mice with high WASF3 levels, and guess what? Their exercise capacity and ability to recover was significantly decreased (again, sound familiar?).
• They discovered that high WASF3 levels also causes high Endoplasmic Reticulum (ER) Stress Response. I know that's a mouthful, so let's just call it ER stress, as they do. This is important because high ER stress also occurs in other diseases.

The bottom line:  

These researchers studying cancer have found a new mitochrondrial abnormality that helps to explain not only fatigue in ME/CFS but also our characteristic exercise intolerance/post-exertional malaise. Even better: ER stress is a factor in other diseases, so there are already studies to look at supplements and medications to reduce it. This research team now wants to follow-up with possible clinical trials to try some of these treatments for ME/CFS specifically. And, of course, there's the fact that a whole new team of researchers are now fascinated by the complexities of ME/CFS and motivated to keep digging.

Here is the paper published last year by this team on WASF3 and ME/CFS. And, again, the 2011 paper on 11 genetic abnormalities in ME/CFS that helped them to connect the dots. 

To understand all of this, I read an excellent, easy-to-understand article in Science about the new study. And, as always, I relied heavily on Cort Johnson of Health Rising who worked his usual magic to make this complex series of events and scientific studies understandable. You can read Cort's article here (his sidebar, The Gist, is always helpful for a summary).

Exciting news! 

The fact that the research team is already planning clinical studies gives me hope.

What are your thoughts on these new study findings?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Chronic Illness Vlog: I'm Back, Baby!

After months of a very bad relapse of my ME/CFS, I had a wonderful week! I felt really good, had good energy, and was active and productive. In this video, you can see me out and about, coming back to life after months on the couch, and I explain how I figured out what was behind my bad crash (in short, still yeast overgrowth!), and the radical diet change I made that resulted in such a stunning turn-around.

You can watch the video on YouTube (there are additional notes below the video - click on "...more") or here:

You will see a very big change from my last chronic illness vlog, a few weeks ago, which was almost entirely from a horizontal position on my couch.

That's all I have time for today - a quick update. My husband and I are going out of town for a few days - just a quick trip to a town about an hour away. They have a wonderful independent bookstore that is hosting a book event for me and my book! I'll have a chance to tell my chronic illness story, read a bit of the book, meet people, and sign books. This has been scheduled for months, so I am very relieved to be feeling well enough to manage it!

 

How was YOUR week?

How are you doing?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Chronic Illness Vlog: Doing Better! ... And Sometimes Overdoing

It had been a while since I recorded a chronic illness vlog, so I put one together. These brief video clips from last week show an honest view of my life with chronic illness with its ups and downs. I've finally gotten my flare-up of yeast overgrowth/candida (chronic for many of us with ME/CFS, long-COVID, and Lyme) back under control. I've also been struggling for a year with treating hypothyroidism and am finally doing quite well! It was a mixed week, with some good, productive days and some run-down days. 

You can watch the video on YouTube (and see all the notes and links below it) or right here:

How are YOU doing?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Beyond the Cul-de-Sac

A beautiful day by the creek

My husband gets credit for the title of this blog post. When I asked him this morning if he wanted to take a walk after breakfast, he said, "Beyond the cul-de-sac?" and then, "That would be a great name for a blog post." So here, it is!

The significance of that phrase is that I've been struggling all summer--really most of the past year--with low energy and more fatigue than usual. Between trying to find the right combination of treatments for my hypothyroidism, and my battles the past few months with severe yeast overgrowth, my energy and stamina have been much lower than usual. So, my daily walks have mostly been around our cul-de-sac--yup, exciting, around a small circle! When I feel I can manage a bit more, I walk our cul-de-sac and the next one over, but any further in our neighborhood involves too many hills. Once in a while, if I'm out for a medical appointment, I stop at a local paved walking path and stroll the flat parts, about 10-15 minutes.

So, that's why my husband was excited when I proposed a walk today "beyond the cul-de-sac"! We drove to a beautiful creek-side path we love. It's very flat (my heart rate barely went above 90), and we walked slowly. The humidity dropped today, which is why I suggested a walk, and this spot is so peaceful and restorative. I love listening to the sound of the bubbling creek alongside us. 

As I explain in my book, scientific studies show that time spent in nature provides measurable improvements in both mental and physical health--it even improves immune function! Studies also prove that even looking at pictures of nature can produce some of these beneficial results. So, here's my gift to you on this beautiful Sunday. If you're not able to get out and enjoy nature where you are, I will share ours with you here (and to hear the water and see the sunlight, check out my video short):

Someone left behind some nature artwork!

Cool and comfortable in the shade

My happy place

Looking down-creek

And up-creek

A lovely morning along the water!

How do YOU enjoy nature?

New Research & Resources on ME/CFS and Long-COVID

I currently have 18 tabs open on my laptop browser, and most of them are new research on ME/CFS, long-COVID, Lyme disease, and related topics that I wanted to save to tell you about! So, I think it's time to pull some of this information together for you and clean up my browser a bit. 

And that's the really good news: there is so much exciting research going on right now, being reported each week! It's hard to keep up with it all, so let me help you with some quick recaps, with links to more information:

Helpful Resources for Patients (and Doctors, too):

Last week, I wrote a whole post about Resources for Educating Doctors about ME/CFS and Long-COVID, so be sure to take a look at that, too. Here are a few additional resources that I've found helpful as a patient:

• Heart Rate Variability from the Bateman Horne Center (led by Dr. Lucinda Bateman, one of the top ME/CFS specialists in the world) - this simple one-page information sheet explains what Heart Rate Variability (HRV) is and how it can help you track how well (or poorly) your autonomic nervous system is functioning. This is another easy way track how you are doing, with hard data, in addition to heart rate and steps taken (see my video and blog posts on Measuring Limits with Heart Rate Monitor and Step Counter). I'd heard that HRV was important but didn't understand it - now I do! I have set up my Apple Watch to track HRV daily, as well as heart rate and steps taken - just another tool to measure when I need to rest and when I am doing OK. Share this with your medical professionals, too!
• Physiology of Post-Exertional Symptom Exacerbation - this video from Dr. Todd Davenport explains the latest scientific findings about why exertion makes us worse and what is going on in the body of someone with ME/CFS or long-COVID when we are active that causes the characteristic crash. Dr. Davenport is one of the top experts in this field, and I had the pleasure of "meeting" him when we were both participants in a set of informative videos about using heart rate monitors in ME/CFS (Part 1 and Part 2), intended for both patients and physical therapists/physios.
  

 

New Research Advances and Updates

• "Blood Tests for Chronic Fatigue Syndrome," an article in Drug Discovery News. This article, which is written in clear layperson language, describes the need for biomarkers and diagnostic testing for ME/CFS, and three of the best possibilities from recent research. You can't go into your local lab to get any of these tests yet, but the progress and the focus of these researchers is encouraging. This is also a great article to share with any doubting doctor (along with the Resources for Education Doctors about ME/CFS and Long-COVID).
• "Circulating MiRNAs Expression in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" - directly related to the article above, microRNAs are one possibility for future biomarkers/tests to diagnose ME/CFS. In this case, the focus was on how miRNA gene expression specifically for activated HHV-6 infections (common in ME/CFS) could differentiate ME/CFS patients and healthy controls. This short abstract describes the findings.
• "Nicotine applied by transdermal patch induced HSV-1 activation and occular shedding in latently infected rabbits" - I wouldn't normally call attention to an animal study but this one was disturbing, eye-opening, and definitely relevant to ME/CFS patients. We are known to have reactivated herpes-family viruses in our bloodstreams; the specific kind of immune dysfunction of ME/CFS and long-COVID causes these old (latent) viruses to reactivate. There has been talk among long-COVID patients on Twitter of using nicotine as a treatment. Given this evidence that it could cause further activation of herpes-family viruses, I would pass on that one (not to mention how addictive it is).
  
• "Convergence: How Gut, Immune, and Metabolic Issues May Be Producing PEM in ME/CFS" - this excellent article, written for patients, is by Cort Johnson, a patient himself and long-time expert in summarizing research for the patient community. It's his layperson summary of a recent research study, "Suppressed immune and metabolic responses to intestinal damage-associated microbial translocation in myalgic encephalomyelitis/chronic fatigue syndrome" (see why we need to Cort to translate this for us?). As Cort explains, the ground-breaking aspect of this study was how it brought together immune dysfunction, gut issues, and metabolic dysfunction and connected them all to the hallmark exercise intolerance of ME/CFS (and long-COVID, too). See the right-hand column for a shorter, simpler summary under "The Gist." This is exciting research! I plan to share this with our functional medicine specialist.
• "The Paxlovid Possibility: Antiviral Drug Found Protective Against Long-COVID" - another excellent article from Cort Johnson summarizes a recent study from the Veteran's Administration--of 9000 patients!--showing that using Paxlovid early on in COVID-19 infection reduced incidence of long-COVID by 25%. Cort explains the study's findings and what it might mean for long-COVID and ME/CFS in the future. Again, the sidebar labelled "The Gist" provides a shorter bullet-point summary.

That is some really exciting research on ME/CFS and long-COVID, covering some of the biggest aspects of the diseases! The future is looking brighter (and my browser is cleaned up, too). I hope these brief summaries helped to update you on what is going on in the world of research!

Resources for Educating Doctors About ME/CFS and Long-COVID

There are several new publications, in addition to some helpful older ones, available to help patients educate medical professionals about ME/CFS and long-COVID and especially the exertion intolerance that defines these conditions. These documents, guides, and videos should absolutely be shared with your primary care doctor or GP, but they are also helpful for other medical professionals. You can share these with any specialists you see, like neurologists, cardiologists, or rheumatologists. They are also helpful for doctors you see for routine check-ups, like OB/GYN, dermatologist, or even your dentist. And any medical professional who recommends you exercise or is involved with any kind of physical therapy with ME/CFS or long-COVID patients can benefit from knowing about exertion intolerance or Post-Exertional Malaise (PEM). All of these people in the medical profession need to understand how their own specialty fits into the bigger picture of ME/CFS and long-COVID. 

Here are some of the best resources available for sharing with medical professionals (available to download, view, or print at the links provided):

ME Factsheet (NEW and available in multiple languages) - this new document from the World ME Alliance provides a general overview of ME: what it is, symptoms, impact. It emphasizes the exertion intolerance and danger of pushing patients to be active and mentions the link with long-COVID.

Pacing and Management Guide for ME/CFS and Long-COVID (for all patients) - from #MEAction - what are ME/CFS and long-COVID with a detailed explanation of post-exertional malaise (PEM) and how it limits patients, why exercise and Graded Exercise Therapy (GET) are harmful, tips on pacing, and resources.

Pacing and Management Guide for Pediatric ME/CFS and Long-COVID - same sort of document from #MEAction, with a focus on PEM and pacing, but for kids and teens. Excellent for sharing with pediatricians, school administrators, and teachers.

Post-Exertional Malaise (PEM) Video Training Series - developed for doctors and other medical professionals by Dr. Lucinda Bateman, one of the top ME/CFS clinicians in the world, this video series explains not only what PEM is and how it affects patients but also the science behind it. It's a series of seven very short videos (2-7 minutes each). Scroll to the bottom to watch the entire series in under 30 minutes.

Treatment Harms to Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome  - published scientific paper that summarizes all the research proving that exercise/exertion is harmful to patients with ME/CFS and long-COVID - perfect for the medical professional who still insists you should exercise, in spite of you explaining about exercise intolerance. Share this far and wide!

Testing Recommendations for Suspected ME/CFS - from the U.S. ME/CFS Clinician Coalition, the cooperative group including all of the top ME/CFS specialists in the U.S.. They have loads of resources for medical professionals on their website - this document focuses on diagnosis and is perfect for your primary care doctor, GP, or any other medical professional involved in diagnosing you.

Treatment Recommendations for ME/CFS - also from the U.S. ME/CFS Clinician Coalition, this document outlines real medical treatments - for sleep dysfunction, orthostatic intolerance, immune dysfunction, and other aspects of the disease, based on their combined decades of experience treating hundreds of thousands of patients. It is perfect for your primary care doctor, GP, or any other medical professional involved in treating you.

Diagnostic Codes for ME/CFS and Long-COVID - as of last October 2022, ME/CFS and Long-COVID now have their very own ICD codes, the numbers doctors must include for every patient they see. The summary is at that link to print and share with your doctor. They should be using G93.32 for ME/CFS and G93.3 or U09.9 for long-COVID.

I am very fortunate to have an outstanding primary care doctor who understands ME/CFS, was the first one to accurately diagnose me, back in 2003, and has been treating various aspects of the disease in me and other patients for over 20 years. But I plan to print that new ME Factsheet to bring to my new OB/GYN next week and to give to my primary care doctor to ask her to share it with the other doctors, nurses, and physician assistants in her office.

If we all help to share this information, hopefully things will gradually change as more medical professionals understand what ME/CFS really is and how to help, not harm, patients.

 

Chronic Illness Vlog 7-16-23: Yeast Overgrowth, Heat, and Best Friends!

My chronic illness vlogs provide an honest view of my life with ME/CFS and Lyme disease, with all its ups and downs!

Last week, I was struggling with yeast overgrowth/candida, a chronic issue for many of us with ME/CFS and long-COVID due to our specific kind of immune dysfunction. Mine flared up three weeks ago, for unknown reasons, in spite of the treatments for yeast overgrowth that I keep up (diet, probiotics, supplements, and medication) all the time. I was still struggling by the end of the week, but I'm happy to report that my doctor returned from vacation this week, prescribed a stronger antifungal medication for me, and I am starting to see some improvements.

On the plus side, last week, I very much enjoyed plenty of quiet solitude at home while my husband was away, and I had a wonderful weekend with my childhood best friend, who came to visit.

You can watch the vlog on YouTube (which also includes notes under the video and links to more information) or below:

I'm planning to write a longer post about my recent experiences with both thyroid issues and yeast overgrowth, when I have more energy. 

How are YOU this week?

Do you struggle with chronic yeast overgrowth/candida?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Chronic Illness Vlog: Ups & Downs, Thyroid & Yeast, Nature

My energy is very low today, due to a flare-up of chronic yeast overgrowth, but I at least wanted to share my latest Chronic Illness Vlog with you. This is an group of video clips from last week that show an honest view of my life, with all its ups and downs. And I had lots of ups and downs last week, some days feeling well enough (thanks to adjusting thyroid treatment again) to be active and some days feeling run-down or frustrated and overwhelmed ... or both!

Some of the information I mentioned in the video and included in the Notes below the video on YouTube include:

• Thyroid Tests to Request - scroll down to What Helped Me in this summary post of 2022.
• Effective treatments for yeast overgrowth/candida. I am currently doing all of this!
• Sign-up for my e-mail newsletter (goes out at the start of every month).

I'm planning to write a longer post about my recent experiences with both thyroid issues and yeast overgrowth, when I have more energy. 

How are YOU this week?

Have you had a full thyroid panel lately?

Do you struggle with chronic yeast overgrowth/candida?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

New ME/CFS Research Funding at Cornell University

Cornell University in Ithaca, NY, has received a new $9.5 million grant from the NIH (National Institutes of Health) for its multidisciplinary center, Center for Ennervating Neuroimmune Disease, which was established in 2107 to study ME/CFS. You can read all the details of how this new grant will be used in this article.

The center is run by Dr. Maureen Hanson, a longtime ME/CFS researcher who has played an important role in studying the mysterious exercise intolerance at the heart of the disease. Well-known ME/CFS clinician Dr. Susan Levine will help the studies by diagnosing patients in her NYC practice who may participate in the studies. 

The grant will be used for three main research studies, all focused on gene expression that can help to characterize the disease and understand it better:

1. Analyze gene expression in muscle biopsies, using new technology, and looking at RNA in the cells.
2. Study RNA released into blood plasma when cells die, both before and after exercise, to study post-exertional malaise and differentiate between people with ME/CFS and healthy controls.
3. Characterize gene expression in monocytes (a type of immune cell) and platelets in ME/CFS and controls to identify differences in the immune and circulatory systems. Previous work in the center identified abnormalities in these two cell types.

These are all excellent areas for further study. The better that scientists can characterize ME/CFS based on gene expression, the better they will understand exactly what is happening in our bodies. This will hopefully lead to specific ways to both diagnose the disease and treat it effectively.

The full summary about the center and its use of the grant money can be read here.

Milestone: Back on Vacation After More Than Three Years

Last week, we went on a week-long vacation for the first time since November 2019! The hiatus was due to a variety of factors: the pandemic, of course (though we vacation in our camper, so low-risk), caring for my father-in-law who had dementia, and the back-to-back relapses of my own illness the past few years.

I am finally feeling back to what I consider to be my normal baseline, where I can do more and enjoy both some physical activity and social interactions, and where severe post-exertional crashes are rare. 

In fact, I haven't had a severe crash day (let alone a week) since the end of February! Since my doctor made one last adjustment to my thyroid medications (info on thyroid testing here), I've actually been feeling quite good most days. To be clear, as with all treatments for ME/CFS, nothing is a miracle--I still need 9-10 hours of sleep a night and a nap every afternoon--but this is the best I've felt since early 2020.

(NOTE: For more information on how I was able to recover from those relapses and what helped, see my Relapses and Recoveries post).

So, back to our vacation! It was our first camping trip of the season, and we drove a bit south to Virginia, where we visited two beautiful state parks, one to the west, in the foothills, and one to the east, in the flatlands along a river that feeds into the Chesapeake Bay. The weather was perfect all week, and I was able to manage the extra daily walking (to the bathroom and back!), plus a short hike and two hour-long kayak excursions. It was a very quiet, relaxing week spent in nature with my husband. In addition, we started the week with a visit to my cousin near DC and ended the week with dinner out with an old college friend and her husband. All in all, it was a wonderful trip. 

This Vacation Vlog shows lots of video and photos of the natural beauty we experienced last week (studies show that just looking at pictures of nature improves mental and physical health, so enjoy!). You can watch it on YouTube or here, below:

See my post with lots of tips on Camping and Enjoying the Outdoors with ME/CFS. I also have tips for Air Travel with ME/CFS.

Are you able to enjoy a vacation? 

What are your tips for traveling with chronic illness?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Chronic Illness Vlog 4-11-23: Busy Week, Mild Crash, Easter & Spring!

I haven't posted much here lately because life's been BUSY! That's a good thing in many ways because it means I am continuing to feel well. I can now say confidently that I am back to my baseline, where I was in 2019, which is pretty good. I am able to be more active, take walks again (yay!), and manage some social time without crashing. 

In  fact, we are preparing for our first week-long vacation since 2019!! That's not entirely because of my health (nor the pandemic), but due in large part to the fact that we were caring for my father-in-law who had dementia. However, I do feel excited about this trip, rather than worried, which is great! This is also our first time taking our camper out this year, and I am very much looking forward to the quiet, slow pace of a camping trip.

In my latest Chronic Illness Vlog, posted this week (recorded last week), I talk about having a busy schedule (too busy, as it turned out--I did have to leave my book group early and had a mild crash day), enjoying a wonderful Easter visit with my family, an update on my son's first full-time job (he's had ME/CFS since 2004), and as always, some lovely nature footage to immerse you in the sights and sounds of spring. You can watch it on Youtube or below:

I'll leave you with a view of what next week will be like for us!

How are YOU doing?

What was last week like for you?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Quick Chronic Illness Vlog: Great News x 2! Plus Nature.

I didn't record a chronic illness vlog last week, with video clips from my entire week, but on Monday (yesterday), I decided to record a brief video to share some good news!

I think (don't jinx it!) that I am finally back to my "normal" baseline after the terrible (worst in 20 years) relapse that began last September (what caused it and what helped at the link). Here, I talk (and include some photos and video) about a hike this weekend that I managed without crashing.

Even bigger news and a huge milestone for our family ... our oldest son started his first full-time job in his professional career on Monday! He's been sick with ME/CFS and three tick infections for 18 years, since age 10, so this is an enormous step forward for him toward a normal adult life.

You can hear the good news and details for yourself in this quick vlog that also includes some photos and video clips of a beautiful day walking along a local stream - remember that just looking at nature has mental and physical health benefits!

The details of how we each improved to our current level of functioning are all here on my blog - the Treatments tab is a good place to start. I also included more links at the bottom of the video page on YouTube (click Show More below the video).

How are YOU doing?

What was last week like for you?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Chronic Illness Vlog: Doctors, Improvement, Nature & a Small Celebration

I just uploaded a new chronic illness vlog, from last week. My vlogs show an honest view of my life with ME/CFS and Lyme disease, with all its ups and downs.

Last week was actually pretty good, an excellent trend for me! I am finally coming back to life after my terrible relapse last fall, where one set of hormonal shifts sent my whole body into chaos. In this video, I mention a couple of doctor's appointments: one that helped my back pack and another to my primary care doctor for another--and hopefully the last--adjustment to my thyroid meds. I am gradually getting back to a more stable place health-wise. 

Since I was feeling pretty good, I was also out and about more than usual and able to take advantage of some nice weather and early signs of spring!

You can watch my video on Youtube or I'll insert it right here:

 

How are YOU doing?

What was last week like for you?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Chronic Illness Vlog: Ups & Downs and Lots of Nature!

I posted a new chronic illness vlog last week but forgot to share it here. This was recorded at the end of February and first week of March.

It was a week of mild ups and downs, with no bad crash days--those are once again becoming rare, thank goodness. I spent some time with my older son, who is now 28 and has had chronic illnesses since age 10, so there are some thoughts on parenting a sick kid. And this vlog includes lots of peaceful, calming video of nature, since I was able to take several walks that week (my stamina is also improving!).

I'm recording another vlog this week that I will post next week. And this past weekend, my husband and I enjoyed a long-overdue weekend getaway to a rental cottage about an hour away located right on the water, with gorgeous views. I'll include some photos and videos of that, too.

How are YOU doing?

What was last week like for you?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Pacing & Management Guides for ME/CFS and Long-COVID

#MEAction is a great advocacy organization for ME/CFS and Long-COVID that offers a wide range of support and services for patients.

One of their recent projects was developing Pacing and Management Guides for ME/CFS and Long-COVID, with input from patients and medical experts. They have published two guides that are perfect for sharing with doctors and other medical professionals, physical therapists, and schools:

Pacing and Management Guide for ME/CFS and Long-COVID (for all patients)

Pacing and Management Guide for Pediatric ME/CFS and Long-COVID

Both guides provide a medical overview of what ME/CFS and Long-COVID are, a detailed explanation of post-exertional malaise (PEM) and how it limits patients, why exercise and Graded Exercise Therapy (GET) are harmful, tips on pacing, and resources. The pediatric guide would have been SO helpful in thr many battles we fought with our sons' schools to get them appropriate accomodations.

So, check these out, print them, and share them with any medical professionals (or school personnel) you or your child interact with.

Are these guides something that you will find helpful?

How could you use something like this?

Extensive Evidence That GET & CBT Are Harmful to ME/CFS and Long-COVID Patients

That headline should be nothing new to the large and growing population of patients with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and long-COVID, also known as PASC (post-acutes equelae of COVID-19). But, unfortunately, far too many doctors and other medical professionals worldwide continue to urge their ME/CFS and long-COVID patients to exercise and/or prescribe traditional physical therapy, in spite of evidence that these practices are often harmful to these populations.

Now, there is a single scientific paper that pulls all that evidence into one short summary: Treatment Harms to Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, published in Advances in Bioengineering and Biomedical Science Research in January 2023.

This paper references nine different research studies or scientific papers previously published that all come to the same conclusion: that forcing patients with ME/CFS or long-COVID (PASC) to exercise makes them worse, and that it is unethical for doctors to choose any treatment path that could be harmful.

Just the fact that this many previous studies and papers have been published--and, as the author points out, as a result, the UK's NHS revised its NICE guidelines in 2020 to reflect these findings--should mean that doctors are no longer causing harm to their patients in these ways. Unfortunately, that's not the case, and doctors all over the world continue to urge their ME/CFS and long-COVID patients to be more active, exercise, and are even still prescribing traditional physical therapy.

So, if you have encountered one of these misinformed medical professionals who still insists on recommending increased activity, exercise, GET (Graded Exercise Therapy), or traditional physical therapy, click that link above, print the brief paper, and share it with him or her. The best way for us to help change these outdated and harmful practices is to help spread the word.

And once you've educated your doctor that exercise and GET are harmful, help him or her to understand how they can help you with real medical treatments instead. My Effective Treatments for ME/CFS (and Long-COVID) summary is a great place to start. The treatments that have helped my sons and I the most are almost all inexpensive and readily available through any primary care doctor/general practitioner (and there are even some treatments you can try on your own, though it's always best to do so under a doctor's supervision).

I've also written some articles on treating ME/CFS and long-COVID that are perfect for sharing with medical professionals because they are brief and include scientific references at the end (and are written so you can understand, too)--and these are the best treatments to start with, for maximum benefit:

Correcting Sleep Dysfunction in ME/CFS

Treating Orthostatic Intolerance/Dysautonomia in ME/CFS (including POTS)

The best part? If you start by treating Orthostatic Intolerance (OI) effectively, then you often can begin to tolerate increases in activity and small bits of exercise, at your own pace while listening to your body and wearing a heart rate monitor. But you need to treat the underlying causes of exercise intolerance (including OI) first.

Help spread the word! Print a copy of this new paper to share with your own medical professionals!

New Video: Measuring Limits with Heart Rate Monitor & Step Counter

I just posted a new video today, all about Measuring Limits in ME/CFS and long-COVID, Using a Heart Rate Monitor and Step Counter.

You can watch the video on my YouTube channel at the link above or here: 

The video  covers:

• What is post-exertional malaise (PEM), i.e. a "crash," and what causes it?
• How is orthostatic intolerance (OI) a part of PEM?
• How do you estimate your heart rate limits?
• What should you look for when choosing a heart rate monitor?
• How can you use a step counter to measure your limits?
• How do you use both of these tools to stay within your limits and improve your condition?

If you prefer to read, check out my blog posts on:

Heart Rate and Post-Exertional Crashes

Counting Steps: Another Way to Measure My Limits

 And my article that was published on the ProHealth website:

Using a Heart Rate Monitor to Prevent Post-Exertional Malaise in ME/CFS

Tell me about YOUR experiences pacing with a heart rate monitor, step counter, or other tools! I have a new Apple Watch, and I'd love some tips on what to do with it!