I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
I recently read an excellent article on long-COVID from PBS News that I wanted to share with you. My time and energy are very limited this week, as we were away last weekend and are leaving again Sunday (but this time for a few days of relaxing camping), AND we have unexpected house guests this weekend! But I wanted to at least share this article with you.
You can read the article here: Scientists Are Piecing Together the Puzzle of Long-COVID. Here's What to Know. It is relatively brief and written in clear language for regular readers (not doctors or scientists). A few interesting points:
Percent of those infected with COVID who get long-COVID (i.e. lingering symptoms or effects) has gone down since 2020, in part due to vaccines and in part due to different variants of the virus.
Unvaccinated people are at twice the risk of developing long-COVID as those who've been vaccinated.
Post-exertional malaise (PEM) is on their list of symptoms, but the article doesn't mention the cross-over with ME/CFS.
Many who develop long-COVID had only a mild infection at first.
Overall, the article emphasizes the disabling severity of long-COVID and the danger of developing it. I think this is a good one to share with friends and family (especially those who think COVID is no big deal and they don't need to keep getting vaccines!).
Hope you find the article informative and helpful.
Image & logo from Solve ME - www.humansofchronicillness.org
My energy is still lower than usual since my COVID infection five weeks ago, so writing longer posts is on the back burner for now. But I saw an excellent mini documentary this week that I wanted to share with you.
This short film, just 15 minutes long, tells the story of Elizabeth, a young woman with severe ME/CFS who was at one point bedridden and completely non-functional. She's been able to improve enough to sit up with her family once in a while and even speak on this film, but she is still severely limited. This mini biopic does a great job of showing how disabling and debilitating ME/CFS is.
The movie and the other patient stories are very powerful and well worth sharing.
The fabulous research and advocacy organization Solve ME also has a website for patient stories, Humans of Chronic Illness, and you can add your own to their site. It's their image and logo I included above.
Since I got COVID in July, we've been tackling some of the longer Oscar-nominated movies we missed last year. Last weekend, we watched Killers of the Flower Moon, which was nominated for 10 Oscars, including Best Picture. I had read the nonfiction book (my review at the link) back in 2018, and my husband hasn't read it, so we came from different perspectives. We both agreed it was a gripping, fascinating film.
Like many Native American tribes, the Osage were pushed onto a reservation on what the U.S. government thought was useless, barren land in northeastern Oklahoma. But at the turn of the 20th century, the Osage discovered that their useless land was on top of massive oil deposits. Almost overnight, the Osage became the wealthiest people in the world, but their wealth attracted greedy criminals of all kinds. The Osage built nice homes, drove beautiful cars, and lived comfortable lives, while whites poured into their town and took control of the bank and their lives. They did everything they could to control and manipulate the Osage people, including marrying Native women and murdering Native peoples to take control of their wealth. The U.S. government set up a system where every Osage citizen needed a white "guardian" to supposedly protect their interests, but the system was used to keep the Osage from their own assets and steal them.
The movie (and the book) focuses on a young Native woman named Mollie, played by Lily Gladstone, who lives in a large home with her mother and sisters. William Hale, played by Robert De Niro, is a white man who has put himself in the role of wealthy benefactor to the Osage, learning their language and participating in their traditions. He's accepted by them, and he treats Mollie and her sisters fondly, often referring to his deep friendship with their father. Hale's nephew, Ernest Burkhart, played by Leonardo DiCaprio, comes home from WWI, and his uncle welcomes him as a part of the family. He encourages him to marry one of the Native women. Ernest is driving a cab when he meets Mollie, and there is an instant attraction between the two. They eventually marry. It's clear that Hale thinks Ernest is following his advice, though Ernest and Mollie do truly seem to love each other. Osage people begin to die from suspicious deaths and clear, outright murder. Mollie's sister Millie, who's also married to a white man, dies of a mysterious "wasting illness," her sister Anna is found cruelly murdered outside of town, and many other (over 20) Native deaths follow. Mollie herself, who suffers from diabetes, begins to sicken and rapidly worsen. The newly-formed Bureau of Investigation (which will become the FBI), comes to look into the Osage murders, led by Tom White (played by Jesse Plemons).
Martin Scorsese directs this stunning film, with the setting and time period perfectly recreated. The A-list actors, as well as the supporting actors, are all outstanding, and many believe Lily Gladstone should have won the Oscar for Best Actress. She is excellent in this emotional yet understated role. With murder at the heart of the story, there is plenty of suspense, but the audience knows who's behind each death, so it's more of the "will they get caught?" than "whodunit" type. The true story is absolutely horrifying and hard to believe (truth is stranger than fiction!). When it was over, I explained to my husband that the book gave more time to the FBI's investigation, and the importance of this case in cementing its role as a federal crime unit. But we laughed about me wanting more detail because as is, the movie is 3 1/2 hours long! It took us two nights to finish it, but it was well worth the time spent. The entire production was excellent, with great attention to historical detail. It's a long movie, but we were both fully engrossed the entire time.
Killers of the Flower Moon is currently available on Apple TV or to buy on several other services, including Amazon ($19.99).
It's now been three weeks since my COVID infection struck, on top of ME/CFS, and I am still struggling. Many of the viral symptoms have improved (though I still have a lot of mucus), but I am still severely lacking in energy and stamina. I am now able to sit up for short periods of time most days, so that's an improvement. But, I am mostly still living life from my "couch nest," lying down a lot, and sleeping more than usual.
My writing energy is still very limited, but I did put together a vlog last week, so I thought I'd share that with you. It's hard to see any changes day-to-day because these last three weeks have all felt pretty much the same (I'm sure many of you can relate!), but when I look back at these video clips covering 8 days, I can definitely see some small improvements, which is encouraging. I also shared some moments of joy and even fun with my husband and son. You can watch the video on YouTube or I'll include it below:
I did get some good news yesterday. I checked with my ME/CFS specialist in NYC to ask if she or her colleagues (she's part of the ME/CFS Clinician Coalition) knew of anything to help someone with ME/CFS with recovery from COVID (when I got it in 2022, it took me six months to recover back to baseline). I didn't expect much, so I was surprised and thrilled when she replied immediately to say that, yes, there were some treatments they have been using for patients that get COVID that have been helpful! Yay!
