By Britta Shoot
Rachel Graves knows of exactly two neurologists specializing in dysautonomia in Washington state. In addition to dysautonomia, Graves, who lives in Tacoma, has been diagnosed with numerous conditions, including hypermobile Ehlers–Danlos syndrome (hEDS) and postural orthostatic tachycardia syndrome (P.O.T.S.).
Graves was a patient with one of those specialists, autonomic neurologist Dr. Erik Armitano, at his previous practice. “He was amazing,” she wrote to The Sick Times, noting she’d been misdiagnosed for a decade before becoming his patient. “He diagnosed me with P.O.T.S. and [mast cell activation syndrome], even though at the time I had no obvious symptoms of M.C.A.S. except systemic illness.”
But she had to pause working with Armitano when, in May 2024, he opened a new solo practice, the Complex Autonomic Center, which does not accept any insurance.
At his previous practice with other physicians, Armitano fought — and often failed to prevail — against insurance companies unwilling to reimburse for in-depth appointments with patients like Graves. “Much of my time and effort went uncompensated,” he shared in an email. With his waitlist ballooning over the past few years, he began experiencing burnout. He needed to find a sustainable model to offer the time-consuming care his patients needed.
Insurance struggles
Both providers and patients report struggling under the insurance-based healthcare model in the U.S., which was not designed to support those living with chronic illness, nor those treating complex conditions.
In recent months, patients have expressed shock and concern about precious specialists raising their rates and using more restrictive models. Higher rates are particularly tough for people who have lost work and face financial challenges due to chronic illness. Specialists say they feel forced to abandon insurance models that don’t adequately cover the high expense of running a medical practice serving patients with complex conditions.
At the same time, infection-associated complex illness cases have exploded following the onset of the Covid pandemic. For example, before 2020, the Centers for Disease Control and Prevention estimated between 1 and 3 million Americans lived with myalgic encephalomyelitis (M.E.). More than five years into the ongoing pandemic, it’s estimated that new M.E. cases are 15 times as likely as before.
Yet as recently as 2022, there were reportedly fewer than 20 ME specialists in the U.S. Put simply, there are too few physicians with expertise in conditions impacting an ever-exploding number of patients. As this crisis unfolds with more cases of Long Covid, need continues to outpace available care.
Rising — and uncompensated — costs
For this story, The Sick Times spoke with a dozen people living with complex chronic conditions such as M.E., M.C.A.S., and long Covid. Many requested anonymity or would communicate only off the record for fear that speaking out about exorbitant costs would jeopardize their ability to continue receiving care or to pursue care with other elite specialists in the future. Several individuals likened their caution to abusive relationship dynamics: that speaking out might jeopardize the stability they’ve struggled to obtain.
One notable physician who raised her costs recently is Seattle-based M.E. specialist Dr. Ilene Ruhoy. Like Armitano and many healthcare workers treating long Covid, Ruhoy was experiencing burnout when she made the difficult decision to establish membership pricing in her private practice. In an interview with The Sick Times, she explained that she felt her options were to raise prices and reduce her patient commitments, or close her clinic altogether.
“I know I have a lot of unhappy patients,” she said of her new concierge model.
Ruhoy’s lowest monthly tier costs $2,500, for which patients are guaranteed six one-hour appointments annually. Her middle tier, $5,000 monthly, guarantees one appointment each month. She described her lowest tier as a concession she added after receiving patient feedback, including angry messages wishing her harm. To receive up to two monthly appointment slots, her concierge fee is $8,500 monthly. Patients also pay for treatments separately.
More doctors needed
Ruhoy is well known among people with chronic illnesses and cohosts the Unraveled podcast with Dr. David Kaufman. The specialist duo started the podcast hoping to inspire more physicians to specialize in the same array of chronic conditions they treat. “We need more doctors to do this kind of work,” Ruhoy emphasized.
She went into private practice a decade ago, specifically seeking to spend more time deeply listening to patients. But her caseload skyrocketed. “I got overwhelmed, and I think that’s largely because I have this niche in neurology. There aren’t many doing work with M.E. or [long Covid],” she explained.
Concierge medicine operates outside traditional insurance models, with providers charging a monthly or annual fee to be a patient, plus additional self-pay charges for appointments and other care. Numerous specialists treating complex conditions note on their clinic websites that eschewing insurance coverage allows them to spend more time on patient care rather than administrative work.
This may be true for some providers. However, research shows that concierge medicine exacerbates inequities in care and cost without meaningful relief for patients.
But traditional insurance models don’t support time-intensive appointments. Armitano said that beginning in 2016 and 2017, he noticed patients’ medical complexity increasing. At the same time, insurers were discounting rates and not reimbursing in full for lengthy consultations.
Workload strains
The Covid pandemic further strained his workload and amplified existing tensions on his time and abilities. Administrative changes at his former practice — and patients describing self-pay models at other clinics — led him to set up his independent practice with a self-pay model. This means patients pay directly for care, and billing is transparent.
For example, new patient consultations are a flat $1,250, and 40-minute follow-up consultations are $525. The self-pay model allows him to focus on two to four interrelated issues in one visit, he said: “This approach has allowed us to provide a much more comprehensive level of care.”
Ruhoy explained that her new model ensures she’ll see most patients at least once a month to maintain a consistent care relationship. “I do my best neurology when I really know my patients, and that just takes a lot of time,” she said. “Insurance companies are brilliant in the sense that they’ve made the doctors be the villains in all of this. Because they refuse to reimburse appropriately, doctors are forced to make these kinds of decisions. We look like the bad guys, and that’s just not fair.”
Priced out of continuing care
Paying thousands out of pocket for concierge access is financially difficult — especially for patients managing chronic, overlapping conditions for which there are no guaranteed treatments, nor any cures, and who are often too disabled to work for money.
Salvatore Mattera, who has long Covid and works as a finance manager at Google, has been able to spend tens of thousands on care only because he has excellent health insurance from his employer, as well as disposable income, he said. Patients unable to pay for continuing care when providers raise rates say they feel abandoned and abused after saving and shelling out for access to specialists who are now unaffordable — and unreachable.
Alex, who asked that their real name not be used, has a moderate to severe case of ME and had hoped to pursue surgery for craniocervical instability, or C.C.I. Alex waited years to become Ruhoy’s patient, following Ruhoy across several clinic changes and adding themself back to the neurologist’s waitlist every time. Eventually, Ruhoy offered Alex an appointment and asked for $1,350 up front for a 90-minute telehealth appointment at Ruhoy’s $900 hourly rate.
Alex was unprepared to suddenly pay the equivalent of a large percentage of their monthly disability income. They used a credit card that they then paid off by digging into savings. As Alex is unable to work, “taking money out of my retirement was a big deal for me, as I can’t replace that money,” they explained in a message. They say that now, they have no way to pay for any of the concierge levels to access additional appointments.
Ash, a pseudonym for another person living with conditions including M.E. and M.C.A.S., describes Ruhoy’s rate increase as “a fee schedule that would be at minimum more than my mortgage payment.” Like Alex, Ash became Ruhoy’s patient hoping to be accompanied through complex neuro- and vascular surgeries that are a specialty for Ruhoy.
Anxious and fearful
Currently, Ash is in the middle of what they expect will be an 18-month recovery from C.C.I., and increasingly anxious and fearful. “I had assumed that I would continue to see her for the duration of my recovery, especially since a lot of patients like me need additional surgery even before the recovery is complete,” Ash said in a message. But that changed with Ruhoy’s new concierge model.
“[Dr. Ruhoy is] so incredibly smart, so sharp, so quick, so helpful, that after my last scheduled appointment, my spouse turned to me and said, ‘Maybe we should try to do the concierge thing for a couple of months.’”
But that would mean digging into retirement funds, and Ash worries that the cost of their continuing care might mean their spouse would not be able to retire as soon as hoped. “I feel so uncertain about my future now because [Dr. Ruhoy is] irreplaceable — but now so inaccessible.”
“The thought that patients are feeling scared and that I’ve somehow abandoned them really hurts me,” Ruhoy said. “But I just don’t know how to do this anymore,” explaining the expense of running a clinic, including compensating qualified staff and herself, and paying sky-high Seattle rent.
Many patients described wanting to maintain doctor-patient relationships despite the costs because specialists treating these conditions are so rare. Even though she’d be paying out of pocket, Rachel Graves may end up following Armitano to his new practice. “He helped me a lot,” she emphasized.
Patients self-manage care
Subscription models for long Covid and M.E. care, which offer prescriptions and other guidance, are less pricey than some specialists but still remain out of reach for many patients. RTHM — which stands for “real-time health monitoring” — was founded by Dr. Jennifer Curtin, a well-known physician specializing in post-viral illnesses. The platform has been controversial within patient communities. Mattera, who developed Long Covid in early 2023, has publicly criticized RTHM’s high costs and lack of care.
Mattera, being finance-minded, was inspired by his poor experience with RTHM to start the website Help for Long COVID, which hosts reviews of providers and treatment options. Even with excellent health insurance, his own medical spending after developing long Covid has been in the tens of thousands. “Most people cannot afford this,” he told The Sick Times. “Whatever they can spend, how do they get the best return on a dollar? That’s the goal of the site.”
Like concierge-model medical offices, subscription-based access to RTHM costs upward of $12,000 annually, not including the $1,500 sign-up fee. There’s a three-month required minimum and thus a minimum cost of several thousand dollars between enrollment and monthly payments.
The platform is not currently in-network with any U.S. health insurance plans, nor does RTHM accept patients who are uninsured. When RTHM’s fees increased in February 2025, legacy patients reported being kicked off $450 monthly plans. (Prices have not changed in 2025, remaining at $1,000 per month, RTHM wrote in an email after this story was published.)
“I don’t think there’s anything wrong with doctors charging money for their time — if they’re helping people,” Mattera added. But he says individual patients with complex conditions should be able to find out whether a physician offers meaningful support before paying a high cost.
Help for Long Covid allows anonymous reviews. This enables the site to display useful information while balancing patient concerns that disclosing poor care will jeopardize a critical but complicated relationship. Mattera has received private messages agreeing with his public complaints about specific physicians or platforms, but many patients told him they’re afraid their providers will cut off care if they publicly complain.
Patient responsibilities
In this expensive healthcare landscape, some people with complex conditions are managing care on their own. Whitney Fox lives in Baltimore, Md., and has complex conditions including M.E., P.O.T.S., hEDS, and long Covid. Fox was a patient at P.R.I.S.M., a practice specializing in musculoskeletal conditions that doesn’t accept insurance. But Fox couldn’t pay $325 out of pocket every three months for appointments to refill prescriptions she’s had for years.
Fox switched her low-dose naltrexone (L.D.N.) prescription to RTHM Direct, the platform’s online pharmacy (which has lower prices than its subscription service). She knew how to titrate up dosing on her own but notes if she’d been new to using L.D.N., she would’ve wanted more personal care. “With RTHM Direct, I felt like I was interacting with a chatbot rather than seeing a doctor, but in this case, that was more accessible for me,” she wrote in a message.
Bozeman, Montana–based communications consultant Kira Stoops, who lives with long-term M.E., has drastically cut back the care she seeks due to the proliferation of self-pay models. While she maintains relationships with her primary care physician and physical therapist, both still covered by her insurance, she self-paid for psychotherapy until she suspended counseling due to the cost. “My therapist went off insurance because it was so bad for her mental health,” she explained.
She says some of these changes are understandable. “I don’t blame these doctors,” she said. “I have tried to work with insurance, and it’s debilitating.”
Stoops worries that diminishing access to treatment options also hinders research. It’s a vicious cycle: with fewer people able to try experimental drugs and therapies, there are less data about how well they work, which in turn leads to higher barriers for approval. Other patients and providers share her concern.
The gulfs continue to widen between patient needs, robust research, and affordable and accessible care. Even Ash, whose spouse works full-time and has healthcare, feels increasingly left behind by self-pay practices. “I’m worried this will start a trend, just like when [providers] started ditching insurance,” they said.
“That caught on like wildfire when they realized [patients] were so desperate that we’d scrounge for the incredibly high hourly rates. It’s so depressing that even with excellent insurance, I still can’t access all the care I need.”
Resources for patient research:
For people with Long Covid and related chronic diseases looking to learn more about potential treatments, here are a few places to get started.
- Long COVID Essentials: Resource guides produced by The Sick Times and Long Covid Justice.
- 2025 Clinical Care Guide: Managing ME/CFS, Long COVID, and IACCs: A new guide from the Bateman Horne Center that patients can share with their providers to educate them on managing and treating complex chronic illnesses.
- Help for Long COVID: Early-stage Yelp-style directory of physicians and treatments, built by a person with long Covid and his spouse, for other long Covid and chronically ill patients.
- Project ECHO: This C.D.C.-funded program seeks to educate healthcare providers about different specialty areas, using webinars and other telehealth tools. The Bateman Horne Center has coordinated ECHO sessions about M.E., long Covid, and related diseases; video recordings and slides are available on their website.
Britta Shoot is a San Francisco-based journalist and editor. She is writing a book about early HIV/AIDS pandemic civil resistance.
This article was originally posted by The Sick Times, a journalist-founded website chronicling the Long Covid crisis. The Sick Times makes its articles republishable with credit. Find The Sick Times here.
