Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

New novel features main character with ME/CFS!

Spotlight on author Jean Meltzer, person with ME

Author Jean Meltzer has the distinction of being an Emmy-award winning writer who is living with chronic illness and disability. Through her unique experiences, Jean is able to create diverse work that gives a voice to underrepresented communities.

Open Medicine Foundation is honored to share an illuminating interview with Jean, a person with ME/CFS, whose delightful new novel, “The Matzah Ball,” follows the story of a main character with ME/CFS.  

Already boasting rave reviews, “The Matzah Ball” serves to shine a bright light on a hidden and often misunderstood patient community. Today Jean discusses her life and process of writing a novel for ME/CFS advocacy.

What is your personal connection to ME/CFS?

I was diagnosed with ME/CFS in 1998 while a freshman at New York University. At the time, a heavy psycho-social debate raged around my disease, and like many patients, I hid my diagnosis until I had no choice but to come out of the “chronic illness closet” in 2006. It was then that I officially became an advocate. 

Though I never returned to pre-illness levels of wellness, I’ve had some good years, and I’ve learned how to navigate life with my disease. Unfortunately, I’ve had some very bad years, too. Between 2012-2015, I was mostly bedbound, and my husband was my caregiver. 

This was also the first time in my life where I was too sick to write. Thankfully, I improved, and the dark days eventually became brighter. Now, I’m homebound and exist on a part-time schedule.

What do you most hope to convey by writing a story where the protagonist has ME/CFS? 

I hope that people with ME/CFS feel seen. We must maintain hope with this disease, and I think it’s incredibly powerful that this book unapologetically affirms ME/CFS as a real disease. 

I’m also excited to educate healthy folks about ME/CFS. Often in ME/CFS advocacy, it can feel like screaming into an echo chamber. You post an article on Facebook and who reads it? Other sick people. You start a fundraiser, and who donates? Other sick people. Books, however, are an opportunity to place other people in your shoes. I hope that “The Matzah Ball” makes life easier for sick people. If one reader writes to me to say that someone in their life “gets it now”– then all the hard work has been worth it.  

What was the most challenging part about constructing a main character with ME/CFS? 

Because there are so few representations of homebound characters in fiction, I didn’t have any models of how to write a character like Rachel. A cardinal rule of fiction is that characters have to be actively doing something. How do you write a character who spends a majority of their time homebound? 

But then, I looked at my life with ME/CFS and realized that I had done a lot of amazing things. I won an Emmy, went to seminary, lived abroad, and got married. It clicked. ME/CFS didn’t destroy Rachel’s life, but it was a major part of it. It informed her decisions and the way she related to others. She would need ‘recoup days’ and maybe a wheelchair, but the book would be about her journey to acceptance and authenticity. 

Do you find that chronic illness is underrepresented in literature? 

Absolutely. I think it speaks to that issue of visibility.  Often, when we meet a chronically ill character in fiction, it is through the lens of a healthy character. Many times, this chronically ill character will be shown in a wheelchair. It plays into this myth that all disabilities are visible. 

We need more stories written by people with chronic illness that explore narratives through our perspectives and experiences. Culture change takes time, but I am convinced that one of the keys to improving the lives of patients with ME/CFS is by making ME/CFS mainstream. 

“Often in ME/CFS advocacy, it can feel like screaming into an echo chamber. Books, however, are an opportunity to place other people in your shoes. I hope that “The Matzah Ball” makes life easier for people with chronic illness.”

 “The Matzah Ball” is available in bookstores on Sept 28, 2021 and can be ordered online through this link.

Interested in purchasing a signed, personalized copy of The Matzah Ball? Check out this link.

*Please note, signed copies are available to U.S. residents ONLY.*

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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

Averting a second pandemic:

Open Medicine Foundation leads groundbreaking international study of

Long COVID’s conversion to ME/CFS

AGOURA HILLS, CALIF.  — Open Medicine Foundation (OMF) is leading a large-scale international collaborative study investigating the potential conversion of Post-Acute Sequelae SARS-CoV-2 infection — more commonly known as Long COVID or Post-COVID Syndrome —  to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic, life-altering disease with no known cause, diagnostic test or FDA approved treatments available.

Up to 2.5 million people in the U.S. alone suffer from ME/CFS; the COVID-19 pandemic could at least double that number. An estimated 35 percent of Americans who had COVID-19 have failed to fully recover several months after infection, prompting many to call it “a potential second pandemic.”

OMF recognized a familiar health crisis emerging, one with eerie similarities to ME/CFS. This crisis presented a unique opportunity to understand how a viral infection — in this case COVID-19 — may develop into ME/CFS in some patients. The goal is to find targeted treatments for ME/CFS patients and ultimately prevent its onset in people infected with SARS-CoV-2 or other infections.

The federal government is only now investing in Post-COVID research, with no focus on its connection to ME/CFS. OMF has already engaged researchers for the largest-scale study of its kind, solely supported by private donors who have contributed over one million dollars to date. When fully funded, the five million dollar, three-year study will be conducted across the globe at OMF funded Collaborative Research Centers, led by some of the world’s top researchers and ME/CFS experts.

BACKGROUND

In a significant percentage of patients, infections preceded their development of ME/CFS.  For example, according to the CDC about one in ten infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti develop symptoms that meet the criteria for ME/CFS.

THE STUDY

The ability to follow the development of ME/CFS from a known viral infection is unprecedented to date and crucial to researchers’ understanding of the disease. The focus of this study is to find the biological differences between persons returning to good health after COVID-19 and persons who remained ill more than six months after infection and developed ME/CFS.  Understanding these alterations in key pathways can lead to groundbreaking discoveries including new biomarkers, drug targets, and prevention and treatment strategies.

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About Open Medicine Foundation

Established in 2012, Open Medicine Foundation leads the largest, concerted worldwide nonprofit effort to diagnose, treat, and prevent ME/CFS and related chronic, complex diseases such as Post Treatment Lyme Disease Syndrome, Fibromyalgia, and Post COVID. OMF adds urgency to the search for answers by driving transformational philanthropy into global research. We have raised over $28 Million from private donors and facilitated and funded the establishment of six prestigious ME/CFS Collaborative Research Centers around the world. To learn more, visit www.omf.ngo.

CONTACT:

Heather Ah San

Development and Communications Manager

1-650-242-8669

heather@omf.ngo