Monday, March 25, 2024

Movie Monday: American Fiction

Looking for a movie to watch Saturday night, I went through the list of Oscar Best Picture nominees, and we chose American Fiction. I'd heard great things about it, and my husband trusted me (well, that, and the 93% on Rotten Tomatoes and 96% audience score!). We both enjoyed this warm, thoughtful, entertaining movie about books, writing, and the publishing industry.

Thelonius "Monk" Ellison (yeah, it's a mouthful--that's why he goes by Monk), played by Jeffrey Wright, teaches disinterested college students about literature and writing and has published several literary fiction novels. He's a smart, well-educated man and his books have been critically acclaimed, but they don't sell well. When Monk participates in a literary festival, his session is poorly attended, so he goes down the hall to see where everyone is. A packed room is listening raptly to a well-spoken Black female author, played by Issa Rae. Her widely popular novel, We's Lives in the Ghetto, of which she reads an excerpt, represents everything Monk feels is wrong with the publishing industry. It relies on Black stereotypes: rapping, trash-talking Black characters dealing with teen pregnancy, jail, and deadbeat dads. Monk is disgusted, but when he's got writer's block while working on his latest novel, he writes his own "real Black experience" novel as a joke. His editor is shocked when he sends it out, and Monk is offered the highest advance he's ever gotten (by a long shot) from a major publisher. As disgusted as Monk is with the whole thing, he desperately needs money. His sister, played by Tracee Ellis Ross, and brother, played by Sterling K. Brown, are both broke after painful divorces, and his mother has dementia and clearly needs 24-hour care. Needing to care for her, he publishes the book under a pseudonym, and the movie rights are quickly sold for an astronomical sum. Struggling with family issues and wanting to get closer to a woman he's been dating named Coraline, played by Erika Alexander, Monk is conflicted but goes forward. As you might expect, things get really complicated (and hilarious).

This is a very funny movie, but it's smart humor with a hefty dose of irony that the audience is in on. It's also poignant and heartwarming. While it is clearly skewering the publishing industry (and some readers), it's also a deeply-felt, moving story about family. And of course, it is a thoughtful, original approach to thinking about race and biases in our society. It won the Oscar for Best Adapted Screenplay (it's based on the novel Erasure by Percival Everett), and it's clear why: the writing is outstanding. That, combined with excellent performances by its A-list stars, makes this movie an absolute winner. My husband and I both loved it and laughed all the way through.

It is streaming on MGM (I didn't even know they had a streaming service). It is also available to rent for $3.99 on Amazon and on other outlets, like YouTube, Apple, and Roku.

I'm including a "clean" trailer below, which showcases the humor of the movie, but the trailer with the swearing in it is even more funny and highlights the roles of Ross (as his sister) and Brown (as his brother).

Friday, March 22, 2024

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.

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Friday, March 15, 2024

Treating Endocrine (Hormone) Dysfunction in ME/CFS

I just updated my summary of ME/CFS Treatments (always available through the tab at the top of the page on my blog). It provides a good roadmap for patients and doctors to all of the many effective treatments that are available now for ME/CFS and long-COVID. Many of those treatments are inexpensive and readily available everywhere. I had to add a whole new section on treating endocrine dysfunction because it's something I hadn't covered completely on my blog in the past. I decided to reprint it here, as a new blog post, to be sure everyone sees it.

ME/CFS causes severe endocrine dysfunction--that's the part of the body that controls hormones, and hormones control everything. Messed-up hormones are behind sleep dysfunction (which can be corrected) and are one factor behind Orthostatic Intolerance, too. Since deep, good quality sleep is essential to the endocrine system, correcting sleep dysfunction should be your first step. As my doctor told me 21 years ago, getting good sleep will improve everything (she was right). 

(Note that an endocrine specialist is usually only focused on diagnosing and treating primary endocrine disease, like Graves' disease, Hashimoto's, and others. It may be helpful to see one to rule these kinds of things out, but for most patients with ME/CFS, your primary care doctor or GP can help you with the areas outlined below.)

Here are some other areas of endocrine dysfunction:

Sex Hormones:

Sex hormones can wreak havoc in ME/CFS, too. When I was younger, I got much, much worse whenever I had my period. My doctor switched me to 90-day low-dose birth control pills, which worked great! They keep my hormone levels steady for 3 months at a time. Then, every 12-14 weeks, I stopped taking them for 5 days, got a period, and then went back on them. So, instead of crashing from my period every 4 weeks (25% of my life!), it was just 5 days out of every 3 months or so or 4 times a year. Much better!

In 2022, my OB/GYN told me she was retiring. Since I was 57, she said I had to be fully in menopause by then (our plan was to keep me on the birth control pills until I was past menopause, to prevent worsening from menopause symptoms). She wanted to see me through the transition before she left (yes, she was wonderful). We both knew it would be rough--after decades of holding my hormone levels perfectly steady--but it was much worse than we'd expected! That sudden shift in hormones left me completely wiped out, all my ME/CFS symptoms worse, and mostly bedridden/couchbound. I waited six weeks for the artificial hormones to clear out of my system, got tested, and I was indeed fully past menopause. Then, she started me on Estradiol patches (estrogen replacement, also known as Hormone Replacement Therapy or HRT), along with progesterone pills. As my hormone levels evened out again, I returned to my previous (pretty good) level of functioning. My new OB/GYN has agreed this is a long-term treatment for me because of my ME/CFS (there are risks, though, so it should be discussed with your doctor. Mine ordered tests first).

Testosterone cream can also be helpful to some, especially men with low testosterone.


For many, many years, I said that thyroid dysfunction was very common in ME/CFS but that I didn't have it. Boy, was I wrong! After that awful transition off birth control pills at the end of 2022, my thyroid was severely dysfunctional. Hormones are all connected (the endocrine system), so when one is off, it can throw the whole system off. This is another reason why it is so critical to correct sleep dysfunction

I was already on a low dose of one medication for hypothyroidism, but it clearly wasn't enough. I spent a full year, working with my primary care physician to normalize my thyroid function--getting lab tests (which ones is critical), adjusting medications, waiting two months to retest, etc. Finally, by the end of 2023, with medications and supplements, my thyroid was functioning well. I'm now feeling the best I have felt in years! 

And, by the way, I lost over 20 pounds just from normalizing my thyroid function (no change in diet at that time), and I am at a healthy weight I haven't seen in 20 years. That tells me that my thyroid was off for a long time. This post explains all about Diagnosing and Treating Thyroid Dysfunction in ME/CFS and Long-COVID, including which tests to ask for.

Low Cortisol:

Low cortisol all the time is a hallmark of ME/CFS. However, the top ME/CFS experts do NOT usually recommend taking hydrocortisone for low cortisol. The biggest problem is that when you add in artificial cortisone, your body stops producing it on its own. So, you take a patient who is already not making enough cortisol and give them something that makes the situation even worse over the long-term. It is likely to help in the short-term but should not be continued for more than a month or so. 

A better approach is one that has worked well for me. The endocrine system dysfunction that causes low cortisol is closely tied to all the other dysfunctional systems in ME/CFS; it's all interrelated, especially in the endocrine system. So, when you treat and correct other problems, the endocrine system just naturally self-corrects and normalizes. So, instead of treating low cortisol directly, treat immune dysfunction, correct sleep dysfunction (a huge factor in endocrine problems), treat OI, correct methylation, treat thyroid dysfunction, and treat underlying infections. When you do those things, the endocrine system just naturally begins to normalize. This has worked well for me, and when I had my 24-hour cortisol test, it was perfectly normal! It showed the expected higher cortisol in the morning, slowly decreasing during the day to a low point at night. 

 Do you have any experience in treating these types of endocrine dysfunction or any others?

Let us know what helped (or didn't).

Please leave a comment below.

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Friday, March 08, 2024

New ME/CFS Study by NIH - What Does It Mean?

I first heard about the newly published results of the first-ever NIH (National Institutes of Health in the U.S.) study of ME/CFS when a friend of mine forwarded an article from Medscape to me (I have some great friends). My first impression was, "Meh, not much new, and it was a tiny study," so I have been interested to see how much attention it is getting in the mainstream press and what ME/CFS top experts and advocacy groups are saying about it. Here's a brief summary:

Just the Facts

Bottom line of this study:

  • It was tiny - just 17 patients with ME/CFS. 17!! Out of the many millions suffering with the disease in the U.S.
  • But it was very comprehensive. Patients in the study underwent extensive testing in a variety of ways over the course of months, and analysis of the data was in-depth.
  • Much of what they concluded, we already knew: immune dysfunction is at the heart of ME/CFS, evidence of metabolic changes in people with ME/CFS.
  • They focused on its effects on the brain (stemming from the immune dysfunction).
  • The researchers definitely took the disease seriously, and the study paper--and all the resulting news coverage--reflects that.
  • Because of the tiny study size and the reasons why patients were excluded, we have to be careful about drawing sweeping conclusions about everyone with ME/CFS.
  • There were some very specific new findings (like specific measures of immune dysfunction) that can be further studied.

What Mainstream Media Is Saying

The good news is that it is getting a lot of attention in the mainstream media (which ME/CFS research rarely does), thanks in large part to the connection with long-COVID. 

Here's the NIH's press release (short and to the point), describing the results of the study. Clearly, plenty of news outlets picked up the story. And here's the full scientific study report, published in Nature Communications, a prestigious medical journal.

NPR did an excellent, short summary (you can read it at the link or listen to the story at the top of the page). They interviewed one woman who participated in the study, one of the study's authors from NIH, and four of our own experts: Nancy Klimas, Anthony Komaroff, Maureen Hanson, and Lucinda Bateman. They praised the study for its thoroughness, while noting some of its limitations. NPR was thorough as usual, and this quick update should help to educate the general public.

Science always does a great job of summarizing scientific studies for the general population, and their brief article on this study is good. I think they did a great job of summing it up right in the subtitle: Sweeping chronic fatigue study brings clues but not clarity to mysterious syndrome: "megaworkup"revealed brain and immune differences in a small patient group. Of course, they lose points for calling it chronic fatigue and a "mysterious syndrome."

It was also covered by the New York Times, Scientific American, and The Guardian. So, ME/CFS got a lot of news coverage from this report. 

What ME/CFS Experts and Advocacy Groups Are Saying

It's been very interesting to read the analyses of the study from various ME/CFS news outlets, advocacy groups, and patient organizations. 

#MEAction has an excellent, easy-to-read summary, with their analysis of the study's shortcomings and conclusions. Among their observations:

  • The study size was so small (17) because the NIH excluded anyone with "comorbid conditions." Well, guess what? Most of us (one earlier study said 80% but it is probably higher) could name a whole list of other diagnoses: POTS, MCAS, EDS, NMH, etc. One could argue (as I often do) that certain "comorbid conditions" are actually an integral part of ME/CFS, like dysautonomia/OI.
  • The rigorous requirements of the study (overnight hospital stays, exercise testing, etc. automatically excluded those with severe ME/CFS.
  • The study only wanted people in the first five years of illness. Since an earlier (excellent) ME/CFS study showed significant differences in immune markers for people sick less than three years and more than three years, this new study is mixing those together and ignoring those sick longer.
  • The study concluded that 4 of its 17 participants (24%) experienced spontaneous recovery! We all know that's not indicative of the whole population of people with ME/CFS. Earlier studies have put the recovery rate at about 5%. These strange results are probably due to the way they chose and excluded patients and their tiny sample size.
  • The study did require post-exertional malaise (PEM), i.e. exertion intolerance.
  • Most of the study's findings of immune and metabolic abnormalities have been reported in previous ME/CFS studies.
  • The study authors did find some interesting data suggesting "immune checkpoint inhibitors," which can be followed up in future research.

As always, Cort Johnson of Health Rising website provides an excellent, detailed yet easy-to-understand overview of the study and its findings. 

So, bottom line, it's great that ME/CFS got lots of attention in both scientific journals and mainstream media, and its connection to long-COVID was often highlighted. This study was a good start, but a very long overdue one. Its conclusions have limited use and relevance due to the very small patient sample participating and the reasons why patients were excluded. But, the study did have some findings that warrant follow-up. I'm just glad the NIH is finally, after so many decades, taking our disease seriously.

What are your thoughts on this new NIH study?

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Friday, March 01, 2024

Happy 22nd Illiversary to Me!

Twenty-two years ago today, on March 2, 2002, I woke with the worst sore throat of my life, wracked with flu-like aches, and feeling completely exhausted. I figured I had a flu or some other virus, but we all know how that story ends!

You can read a written summary of our years of illness at the Our Story tab (or in Chapter 1 of my book) or the timeline version of our history that I wrote on my 20th illiversary.

On my 16th Illiversary, in 2018, I wrote about how the anniversary date has affected me over the years, at various points in time, including the treatments that helped me to improve.

Most interesting to me now, 22 years into this journey, is that often the date passes without me really noticing! I only remembered this year because someone else was writing about an illness anniversary elsewhere online this week. In those early years, it was devastating to think of how many years I'd been sick, since I'd left my old life behind.

These days, after 22 years, as the title of my book, Finding a New Normal, indicates, this is just normal life now. The date can be more difficult for me when I am badly relapsed (as I was for periods of the past three years), but this year, now that I am feeling better than I have in years, I am grateful that I am able to manage this well. This year, in particular, after those last few very difficult years, I am hugely grateful that I have come back to life in the past two months and am able to see my friends, go out, and be active again.

So, Happy Illiversary to Me!
(I certainly won't be eating any cake on this strict no-sugar diet!)

How many years have you been sick?

How does YOUR illness anniversary affect you?

Please leave a comment below.

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