Patient with ME/CFS likens it to “getting leprosy back in the 1800s; you’re sort of shipped off to an island and never seen again.”

In understanding chronic illness, it’s important to not only learn about it from a doctor’s perspective, but true insight comes from a patient willing to share their very personal experience with it.

Rachel S. has a story to share and it is one not only of suffering, but tremendous courage and an ongoing quest to find a way to manage it.

“Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) can really happen to anyone who has a compromised immune function,” Rachel explained. It is a debilitating disease that reportedly affects as many as 2.5 million Americans. 

“Clinically, ME/CFS manifests as debilitating fatigue that worsens with physical or mental activity that is not relieved by rest and is not caused by excessive exertion.”*

The tricky part is having society understand the intensity of it. Many would take a cursory look at a person who has ME/CFS and respond, “You seem fine,” she said. It’s the silent battles that many living with invisible illnesses must constantly explain to others. Sometimes repeatedly.

“People have no comprehension and doctors don’t understand it,” Rachel said. “It’s not taught in medical school. Plus, if you have a doctor that does understand it, he still can’t help you as there are no treatments.  It’s a nightmare.”

There have been many ups, downs, and standstill moments through the course of Rachel’s medical journey with the condition.   

In her own words, she “got worse before better. Suffering has been part of [my] experience living with ME/CFS.”

What’s been steady? Research, finding and working with a great doctor, and focusing on what is important. She explained that when it comes to post exertional malaise (PEM), “People are always trying to solve that riddle. But I learned from my doctor that’s not the riddle that needs to be solved. You need to solve the underlying issues.”

PEM is “the hallmark symptom of ME/CFS and detrimental to the health of the ME/CFS patient.”*

The analogy she provided can be applied in plethora of ways, “It’s sort of like having a bad knee and you take a Tylenol and go for a run. That’s not going to solve the problem.”

“Everybody’s underlying cause [re: ME/CFS] is different,” Rachel said. “My doctor has said that 100 times. My symptom set is not the same as another ME/CFS patient. That’s what’s really, really tough.” 

Leading up to her diagnosis, Rachel dealt with chronic sinusitis, had sustained half a dozen tick bites, experienced worsening GI symptoms, fatigue, hypothyroidism, neutropenia (very low count of white blood cells), osteopenia (bone loss), and more. 

Upon reflection, she said, “If I could turn back time, I would change a lot of things in my protocol. I would have never [taken] antibiotics.”

It was in 2013 when Rachel was rather quickly diagnosed with ME/CFS.  She said that is rare and she feels fortunate. It took being evaluated by about five doctors before getting the diagnosis. And she learned “a lot of other issues led to this current problem.” 

It is thought that nearly “85% of patients remain undiagnosed.”*

In her viewpoint, “I think doctors’ inability to treat simple conditions that I did have [is what] got me here. I don’t think they know how to deal with chronic conditions or preventive medicine. If it’s not available in a lab test, they think everything is fine.”

Circling back to her viewpoint and experience with antibiotics and how she approaches her health today, Rachel said she “wasn’t making adequate progress on antibiotics.” An interesting fact is that she was taking herbs recommended by medical professionals early on but “it wasn’t my dominant source of treatment.”

She has found that shifting from dominantly antibiotics to primarily herbs, as well as light therapy, has been beneficial in her health and wellness plan. 

Each of us must make independent decisions regarding treatments, supplements, and medications in order to create a comprehensive wellness plan that makes sense for our underlying conditions, as it is not a one-size-fits-all approach.

For Rachel, “The shift in my treatment protocol made things a lot better, because it was more comprehensive, and it was the right set of herbs.” A resource she finds helpful is books by Stephen Harrod Buhner. 

Over the past several years, she has had significant struggles with Jarisch-Herxheimer. This reaction “can be beneficial and is not specific to the ME/CFS patient.” According to the National Institute of Health, a Jarisch-Herxheimer reaction is a “transient clinical phenomenon that occurs in patients infected by spirochetes who undergo antibiotic treatment.”

She noted that, “Doctors aren’t familiar with Jarish-Herxheimer.” She understood it and “I’ve put myself through death to get where I am.”   

When asked what advice she would like to share with the community, first and foremost “is finding a knowledgeable doctor.” Many of us know it can be a lengthy, exhaustive endeavor. 

Rachel has seen more doctors/specialists than most people do in their lifetime. Twenty-plus medical professionals have evaluated, treated and made an impact on her health for myriad conditions. As a child, her parents were very proactive and that has carried with her as an adult.  It is so vital to be proactive and I feel her story is an inspiring message to anyone suffering with a medical condition. 

The human body is unexplainable in many ways. In life, many of us have witnessed horrible health diagnoses find their way to those we consider “super healthy people” (i.e., they eat organic, exercise, practice stress-reducing modalities, minimize alcohol, do not smoke). As well, when the scenario is flipped, (i.e., a person who partakes in ‘all the things’) how is it they can end up leading a long, uneventful, healthy life? 

It is an interesting phenomenon to me and others I have spoken to.  Rachel said the same, “Some people are fortunate and they don’t take any medicine and they live to be 100 years old… I wasn’t one of those people.”

To sum up ME/CFS, Rachel enforced this message: “It’s a nightmare. You generally don’t recover.” 

Living with ME/CFS “has been a cumulative learning” experience for Rachel. Her advice for others? “I think its multiple components.”

  • “It’s a combination of being on the right diet (that’s individual);
  • I think your psychology (not get in a hole mentally to ensure your body is healing well – in whatever it is experiencing);
  • A combination of proper exercise (tough with ME/CFS because patients can’t really exercise … possibly only stretching);
  • Having the knowledge of how to move your body properly is a key component;
  • For proper health you need to be on the right set of supplements. Foods are not enough.”

Current day, coming up on ten years since her ME/CFS diagnosis, when asked how she is doing she said, “I’m still not where I want to be, but my doctor is pleased with my progress.”

This interview’s mission is to shed a personal light on a chronic illness that many do not understand, may not be aware of, and deserves more attention and research funding.

Rachel was kind enough to share her personal journey living with ME/CFS, including what led to the diagnosis, the progress made, and her advice for others living with it or supporting someone with it.

*R.K.S. and C. Powers, Case Report, Chronic fatigue syndrome: A case report highlighting diagnosing and treatment challenges and the possibility of Jarisch-Herxheimer reactions if high infectious loads are present, Healthcare 2021, 9, 1537.


Coming next: Clinical trials and the FDA’s role