Lessons from a year of treating ME/CFS

Katelynn Brown, MD

1/31/20256 min read

The Beginning

The CFS Doc Clinic first opened in late February of 2024. Now, as the one-year anniversary of my dedicated ME/CFS clinic approaches, I find myself reflecting on the past year. Over the past 12 months, I have grown my panel of ME/CFS patients from just 3 to 30. While this may seem like a modest number, growing slowly has brought its own set of advantages.

Since the launch of the CFS Doc website, over 60 people have shared their email addresses to join my mailing list. These requests have come not only from across the United States but also from around the globe. I am both humbled and heartbroken to see how many people are suffering from this illness with so little support from their local physicians. It is only now, nearly a year later, that I feel I have gained enough experience to offer something truly valuable to this group of people, as well as to the wider ME/CFS and scientific community.

When I opened this specialty clinic, I knew I was in over my head. If a fellowship or any advanced training program had been available, I would have enrolled without hesitation. Unfortunately, during residency, I seemed to have a better understanding of ME/CFS than any of my attendings. No specialty has claimed ownership of ME/CFS, and no formal training programs exist. Even if they did, evidence-based medicine offers little in the way of hope or treatment. The necessary scientific groundwork simply hasn't been laid yet. Preclinical studies are still grappling with the fundamental question of what ME/CFS actually is, while clinical studies remain small and often lack placebo controls.

I was well aware that ME/CFS was likely an umbrella term for a complex tangle of conditions that have yet to be fully understood. In short, I was on my own. My own life became my case study, and as imperfect as that may have been, it was the best foundation I had for learning how to treat this condition.

My Approach to Learning

Over the past 12 months, I reached out to every "ME/CFS expert" I could find. I spoke with several and reviewed the care plans of many more. The quality of care varied drastically. Some grouped ME/CFS with fibromyalgia, framing it as a "mitochondrial dysfunction" and advocating for graded exercise therapy. Others diagnosed patients with chronic Lyme disease or mold toxicity, prescribing costly tests and treatment regimens that often seemed to yield little long-term benefit. Still others adhered strictly to "evidence-based" medicine, preparing patients for a lifetime of disability while offering a trial of low-dose naltrexone and recommending pacing. These physicians were often overworked and had trouble keeping up with the disability paperwork.

What I did not see was any attempt to approach the ME/CFS patient with a beginner’s mind. Every physician seemed to either have none of the answers (because science doesn’t know yet) or have all of the answers (which remained the right answers even when the patient didn’t improve). Whatever happened to the physician-scientist—the curious practitioner willing to walk alongside the patient, experiment, and adapt until healing was achieved? In ancient Greece, physicians would try various treatments until the patient improved, then post the story—symptoms and cure—on the clinic wall for others to study and learn from. It was a medical culture of experimentation and case studies.

I understood, at my core, what the ancients knew: we could not wait for science to give us all the answers. The suffering of my patients was too great, too imminent, to be deferred for another year, decade, or century of research. Yet, I also could not justify doubling down on expensive, potentially risky tests and treatments without scientific backing. I had to embrace a beginner’s mind, starting with the simple, foundational, and free lifestyle changes that had restored my own health and branch out from there. I had to let my patients guide me to the truth.

So, I spent months diving deep into each patient’s story. My initial intake questionnaire, originally spread over 12 days to prevent patients from pushing past their limits and triggering PEM, has now been refined to 7 days. Through it, I gather information on eight major life areas and screen for 38 alternative diagnoses or comorbid dysfunctions. I cast a wide net, acknowledging my own ignorance—I don’t yet know what will be useful, so I examine everything I can think of.

From all those questions, one now stands out as the most "high-yield" (as they used to say in medical school). If I had to screen for only one condition, it would be this: cervical instability.

Breakthrough: Upper Cervical Instability

I had known just enough about cervical instability (what I used to call craniocervical instability and now refer to as upper cervical instability) to recognize that I should be looking for it, but not enough to understand how to diagnose or treat it. I began by asking screening questions based on a list of symptoms I found through a Google search. Was this ideal? No. But it was the only lead I had. The questionnaire screened positive for cervical instability surprisingly often, probably more than half the time, and so it stayed on my list of things to explore for each of those patients. However, with so little knowledge of how to address it, I initially focused on conditions I was more familiar with—primarily those that had affected me personally when I was ill.

Over time, it became clear that my most severe patients—all, coincidentally or not, with hypermobility—were not improving. While we made modest gains with rest, time off work, and treatments for POTS and MCAS, they remained far from remission, let alone any meaningful quality of life.

Then came two moments that forced me to confront cervical instability more directly. The first was examining a patient with glaring neurological deficits—deficits I had not been aware of until I saw them firsthand. It was immediately clear that their diagnosis of functional neurological disorder was incorrect, and I realized I had been attempting to "rest" this patient out of an illness that required the attention of a neurosurgeon.

The second breakthrough came when I stumbled upon an expert consensus article written by Leslie Russek and colleagues. This paper, focused on diagnosing and treating upper cervical instability in the context of generalized joint hypermobility, was a game changer. It was the first—and remains the only—resource I have found that provides clear guidance on identifying and managing these patients. It offered enough insight into what to look for, both in the patient history and during the physical exam, that I could finally begin to diagnose cervical instability with confidence.

The most valuable part of the article was Table 2 on page 6, which provides a list of symptoms and highlights those highly specific for upper cervical instability with an asterisk. Since the original uses scientific language, I have adapted the list to make it more understandable for the layperson. Please note that this information is for educational purposes only. If you experience symptoms suggestive of cervical instability, seek a knowledgeable provider for evaluation. More information on that is provided below.

Symptoms of Upper Cervical Instability

A sensation that the head is too heavy or "bobble-headed," requiring support or bracing to reduce symptoms*
Fear or apprehension about moving the neck or riding in a car*
A lump in the throat, trouble swallowing, choking, or voice changes*
Consistent clicking or clunking of the neck with movement*
Ringing in the ears or dizziness*
Headaches at the base of the skull
Shoulder pain in areas where a coat hanger would rest
Neck tension and muscle spasms
Brain fog
Worsening symptoms or lack of improvement after neck massage or other neck pain treatments
Snoring or sleep apnea
Seizure-like activity without seizures detected on EEG; often diagnosed as "non-epileptic seizures" or "pseudo-seizures"*
Sudden collapse (“drop attacks”) unrelated to POTS or low blood pressure*
Symptoms of autonomic nervous system dysfunction that do not respond to treatment, such as persistent anxiety, irritable bowel syndrome, heat intolerance, or lightheadedness*
A feeling of instability, like being on a boat*
Poor coordination*
A pulling sensation in the face, head, teeth, or tongue due to muscle contractions rather than pain* (I have not observed this yet, so if anyone has experienced it and can describe it, I would love to hear from you.)
Tingling or numbness in the face*
Vision changes, double vision, or difficulty with coordinated eye movements (convergence)*
Involuntary muscle contractions leading to abnormal movements or postures*
Numbness, tingling, or pain in the limbs that fluctuates in location or quality*
Sudden changes in alertness, episodic unresponsiveness, or episodic amnesia*

Finding Help for Cervical Instability

Like ME/CFS itself, upper cervical instability is not widely recognized in mainstream or alternative medicine. If you suspect you may have upper cervical instability, the following physical therapists specialize in diagnosis, treatment, and, if necessary, referral to a knowledgeable surgeon:

Susan Chalela from Charleson, NC
Wendy Wagner from Chicago, IL
Patricia Stott from Aurora, CO
Heather Purdin from Portland, OR

Most patients with upper cervical instability do not require surgery. Physical therapy is the most common treatment approach, but it is crucial to have a knowledgeable therapist or doctor evaluate you to ensure therapy is safe and appropriate. They can also help identify red flags that may indicate the need for surgical intervention sooner rather than later.