Help Tim Access Potentially Life Saving Treatment

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Robbie Sepler and Ashley R are organizing this fundraiser on behalf of Tim Murphy.

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Our names are Ashley (Tim’s partner), Robbie, and Breanne (longtime friends), and we are fundraising for Tim’s medical treatment and associated costs.

In 2022, Tim was diagnosed with Myalgic Encephalomyelitis (ME), a serious and debilitating, complex condition that was triggered by a COVID infection. His health has progressively worsened since, and we're reaching out to our community as he has reached a new, critical condition in this tortuous disease.

Today, Tim is fully disabled and confined to his bed in extreme sensory deprivation (virtually no light, sound, or company). We are urgently seeking financial assistance to allow him to access necessary and potentially life-saving treatments before his disease surpasses a threshold he cannot recover from.

We are committed to honoring Tim’s autonomy and dignity, uplifting his voice, and following Tim’s commitment to disability justice and collective liberation. Below is Tim’s story, along with information about ME and Long COVID.

Tim’s Story:

For eight years, Tim was a public defender and legal aid attorney. He was driven by his passion for advocating for marginalized groups. He pursued a career in the legal field to protect and create safety for people in the most vulnerable circumstances. He was known by clients and his colleagues for his tenacity and empathy. There was no case that was too demanding; Tim was dedicated to finding solutions and fighting for the underserved.

Outside of work, he loved hiking, doing advocacy work, listening to live music, bird-watching, spending time with family and friends, reading, and writing poetry. Life as he knew it took a sudden halt after a COVID infection in July 2022. Now, at age 33, Tim is fully disabled, no longer able to tolerate standing or walking, and can only talk for brief periods. He spends nearly 24 hours a day lying horizontally in a dark room in immense pain and requires full-time care from his partner. He lives in near total isolation, unable to socialize or even see friends and family.

Following his COVID infection, Tim developed autoimmune autonomic neuropathy, a type of autonomic nervous system dysfunction thought to be caused by an overactive immune system. Experts now know that a COVID-19 infection can directly trigger autoimmune and autoinflammatory diseases. This can be one presentation of Long-COVID. Tim’s autonomic nervous system can no longer maintain stable blood pressure or supply his brain with sufficient blood, resulting in a racing heart rate, lightheadedness, brain fog, and blood pooling.

In addition, Tim was subsequently diagnosed with myalgic encephalomyelitis (ME), a chronic and systemic disease associated with neurological, immunological, autonomic, and energy metabolism dysfunction. Even minor physical, cognitive, or sensory exertions triggers debilitating headaches, brain fog, and exhaustion, all of which cannot be helped with rest or sleep.

With ME, every time you over-exert yourself, you experience post-exertional malaise (PEM). PEM is a debilitating state, in which you feel dazed, disoriented, having trouble tracking information, cannot move or speak. Every PEM crash reduces your baseline. Not only is it days or weeks of suffering, but with each one, your baseline reduction risks becoming permanent. This is what happened to Tim.

It’s hard to articulate how fundamentally disabled Tim is. Dr. Ron Davis, a researcher and ME expert at Stanford University, put it this way: “ME patients are similar to a critically ill patient 24 hours before they die, except they live like that for years and years.” Here are some examples to illustrate the profound level of debilitation he experiences:

Tim has to budget energy to even pet his dog Boris and is only able to pet him once or twice, before becoming too fatigued.

Tim, even on good days, can only listen to 2-3 minutes of an audiobook, and cannot read a book without triggering severe symptoms.

Tim cannot listen to music or watch TV, as his light and sound sensitivity is too severe.

Even walking across a room can trigger weeks of suffering and severe symptoms.

ME has no cure. Even under the care of top experts, Tim has only made marginal improvements in the last year. The few treatments that do exist are limited and Tim has exhausted all FDA approved treatments in the US. He is now trying experimental treatments, all of which are incredibly expensive and require significant planning.

Donations from this fundraiser will go towards treatments including:

Invasive Cervical Traction (ICT) surgery. Tim was diagnosed with craniocervical instability (CCI) after his COVID infection deteriorated the collagen in his neck. His ICT surgery will be performed by a New York-based neurosurgeon who specializes in spinal surgery for patients with ME. Some post-viral illnesses like Tim’s are a result of abnormalities in and compression of the brainstem. It’s very likely that Tim has gotten as sick as he has because he has compression on his brainstem. ICT surgery in New York will determine if he's a candidate for CCI surgery, which could provide him with lasting remission.

In Tim’s fragile state, he is required to travel by air ambulance to ensure he arrives safely to ICT surgery. Air ambulances, providing bed-to-bed medically assisted transport from Oregon to NY, are estimated to cost upwards of $50,000 in each direction. It is not covered by insurance.

Plasmapheresis. A treatment where blood is removed from the body and filtered, removing harmful antibodies and widespread blood clots, both of which Tim has. His plasma is disposed of and replaced with substitute plasma from donors. It costs $5,000 per session and is not covered by insurance. Tim needs at least 6 sessions, amounting to $30,000.

Intravenous immunoglobulin (IVIG). This is a pooled antibody, and a biological agent used to manage various immunodeficiency states. This treatment costs tens of thousands of dollars and is not covered by his insurance.

Phosphodiesterase inhibitors with anti-inflammatory effects have been repurposed to treat ALS, multiple sclerosis, and ME. These drugs are very inaccessible in the U.S. and must be ordered directly from Japan at a premium rate.

COVID-19 robbed Tim of the life that he knew and loved. Living in complete isolation and in near total sensory deprivation, cut off from the natural world, and away from family and friends, is a cruel, unsustainable existence. Tim deserves his life back.

As his partner, it has been the most heartbreaking experience of my life to watch these diseases render Tim an entirely different person. I know him better than anyone. And the level of debilitation is readily apparent, striking, and profound. Tim is so ill that he is unable to meaningfully participate in his own life.

Tim’s disease is not new, unknown, or rare; it is simply underfunded and effective treatments are under-researched. The ME patient cohort is often too sick to participate in studies and too sick to make it to doctor’s appointments, so we are left to our own devices in seeking appropriate medical care. The number of people who have ME has more than quadrupled in the pandemic. And studies show that the quality of life for severe ME is comparable to late stage cancer patients. Yet the vast majority of doctors won’t treat the condition, as only 6% of medical schools even teach about this common disease.

As his partner and as his friends, we are obligated to explore all avenues to improve Tim’s quality of life. This is a dire circumstance, and we are raising funds to go towards getting Tim the treatments he needs as soon as possible.

Thank you for reading Tim’s story. We appreciate anyone who’s able to contribute or share this fundraiser.

The Realities of Living With ME and Long COVID:

“ME/CFS is one of the worst conditions one can have. Most people know little to nothing about it, but make no mistake, if you get it, your life, as you know it, is over. It’s worse than that. The very essence of life is gone. The severity of symptoms coupled with lack of a single effective treatment against a backdrop of decades of gaslighting, obstruction of biomedical research, total lack of research funding and thus lack of hope, means many patients commit suicide. Suicide is the most common cause of death in M.E.

M.E. is one of the most disabling conditions on earth. Contrary to false beliefs, M.E. is not “tiredness”, you cannot push through it and soldier on just like you cannot walk through walls and it does not respond to lifestyle interventions. M.E. is a paralyzing lack of cellular energy no amount of mental willpower can overcome.

At the “mild” level, patients lose 50% of their function (hardly “mild”). At the most severe levels, patients are bedbound, tube fed, cannot move at all, cannot tolerate light, sound, seeing words, images or even tolerate human presence. People exist in this state for decades and it is not rare. You don’t hear about it because for so long, nobody wanted to know. Studies show that severe ME patients have a quality of life comparable to late stage cancer patients.

The hallmark of the disease, post-exertional malaise or PEM is that anything you do beyond your personal, inhumanely small energy envelope, you will be punished for days, weeks, months or permanently. This could be trying to hold onto a job, an outing, a short walk, having visitors, a phone call, reading, making food, or even trying to sit up in bed or being around noise or sunlight. Yes, the very pathophysiology of the disease can permanently deteriorate because you did a “thing”. Imagine living with that axe hanging over your head in perpetuity.

Contrary to another false belief, the disease is not mysterious. We have thousands of studies elucidating pathophysiology. We know this is an extremely complex, neuro-immuno-metabolic disease involving multiple organ systems. The only reason we can’t make progress is because the research funding compared to diseases with similar burdens is so incredibly low, it’s insulting. Science doesn’t take time, it takes money.”

–Open Medicine Foundation

Additional information on ME: