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I think that the microbiome is going to be where the action is [in ME/CFS]. Dr. Ian Lipkin – Leader of the Gut Microbiome Project for ME/CFS.

 

The third part of Health Rising’s recent gut series takes the gut issues in ME/CFS from the complex statistical analyses we’ve seen in the studies to the very concrete. Research is, of course, invaluable, but it’s slow and takes years to get to the treatment stage and when it does, it usually does so in a very conservative way – trialing one drug or treatment approach at a time.

 

Enter two intrepid ME/CFS entrepreneurs: under a doctor’s supervision, Dr. Tess Falor and Dr. Tamara Romanuk will undergo a complete multi-stage gut reset in an attempt to regain their health. Bolstered by recent gut findings that suggest they’re on the right track, they’ve even managed to get funding to support their efforts and will communicate their results to the patient population, doctors and scientists in real time. This is patient-science at its very best. (Thanks to Natalia for her blog illuminating their efforts.)

 

HR’s Recent Gut Series

 

Dr. Tess Falor

Before she became ill, Tess helped design NASA missions.

Before she became ill, Tess helped design NASA missions.

Dr. Tess Falor was born to be an astronaut. The Michigan native had just turned 21 when she moved to California to start an internship at NASA’s Jet Propulsion Laboratory. “I knew this was what I was meant to do with my life. I was valedictorian of my high school and had a full scholarship to study Aerospace Engineering at the University of Michigan.” For Tess, on the cusp of her career, the NASA internship was a culmination of years of hard work and the next logical step towards a career in space.

But shortly after moving to Pasadena, she started having allergic skin reactions and experiencing bouts of exhaustion and fatigue. She explained: 

“At the time, I was diagnosed with Valley Fever, a fungal infection you can get from breathing in spores from the soil. Whatever it was, it hit me like a tonne of bricks.” Over the next four years, her health went on a downward spiral, reaching a low point when she became mostly bedbound. It was a living hell. “I didn’t know anything about ME/CFS and spent all my energy going to different doctors, none of whom could help.” 

In early 2009, she took a prevpac of two antibiotics (Amoxicillin and Clarithromycin) and a proton pump inhibitor (Lansoprazole) to treat H. pylori. Two days later, something incredible happened. She reported:

“I woke up and felt like I wasn’t in my body. It was disorienting, because my chronic pain had vanished. I thought I’d died because my body felt so light, like I was floating. My brain started working again; colors were brighter, food smelt better and I had this profound sense of gratitude for being alive.” 

What Tess was experiencing turned out to be a sudden and complete remission of her severe ME/CFS. For two days, all symptoms disappeared and when the remission faded, her baseline had permanently improved. From there, she was able to bio-hack her way back to stable health, where she remained for over a decade. Over time, she earned her doctorate in Earth and Planetary Science from UC Berkeley, worked as a postdoc studying Space Physics, and helped design NASA missions as an aerospace systems engineer.

Years later, when her health deteriorated a second time, Tess joined Twitter to connect with the patient community. It was there she crossed paths with Tamara who was tweeting about her own brief remission event. Fascinated to see another person echoing her experience, Tess reached out.

Dr. Tamara Romanuk

A bout of dengue fever caught while doing fieldwork in Jamaica precipitated Tamara's descent into severe ME/CFS.

A bout of dengue fever caught while doing fieldwork in Jamaica precipitated Tamara’s descent into severe ME/CFS.

In 2016, Dr. Tamara Romanuk had just been granted tenure at Dalhousie University in Nova Scotia when she became too sick to continue working as a Professor in their Biology Department.

“Like many of us, stopping work was one of the hardest decisions of my life and a direct reflection of how severe my cognitive issues had become. I was supervising Ph.D. students at the time, and leaving them was devastating.”

Tamara’s descent into severe ME/CFS started with a two-year bout of Dengue Fever while doing fieldwork in Jamaica. She recovered to a mild state, but additional viral hits to her immune system over the next decade eventually left her bedridden.

As they compared stories over Twitter, Tamara explained she’d taken antibiotics to treat a mouth abscess and experienced a fleeting remission as a result.

“For me, it lasted only four hours, but it was like a switch had been flipped. I went from being bedbound in a darkened room, to running around outside making angel shapes in the grass. Like Tess, colors looked brighter and I felt this overwhelming sense of gratitude towards the world. I could viscerally feel it come on and then fade away.”

As with Tess, this brief remission event shifted Tamara’s baseline from severe to moderate. She was stable and continuing to improve until recently, when the Covid vaccine sent her backwards again.

The Remission Biome Project

Bolstered by finding one another, Tess and Tamara created the Remission Biome research project to explore how modifying the microbiome could shift patient baselines in ME/CFS and Long Covid. This month, they plan to recreate their remission events while monitoring their biochemistry to track changes.

As with everything they’ve done so far, they’ll tweet the results of the experiment in real time, using social media to deliver information to the chronic illness community. By publishing their results in an academic journal, they’ll be joining a cohort of patient scientists who, tired of the medical establishment’s lack of action on post-infectious diseases, are taking matters into their own hands. 

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The Experiment

Microbiome gut

The goal – a clean and healthy gut – and a restoration of health.

Their experiment starts with four weeks of microbiome prep where Tess and Tamara will take prebiotics, probiotics, and a butyrate supplement. After this, they commence two months of antibiotics, (all antibiotics have been carefully selected for their anti-inflammatory properties.) They start with a three-day course of Amoxiclav and a one-month course of Doxycycline taken concurrently, followed by an additional month of Minocycline. Their goal is to shock their system into replicating the metabolic event that helped them earlier. 

While on antibiotics, they’ll supplement exogenous ketones (to mimic the state of ketosis they were both in the last time they experienced a remission), as well as anti-neuroinflammatory molecules like b-caryophyllene and plasmalogens. After their course of Amoxiclav is complete, their focus shifts to repopulating their biomes with a range of probiotics, including an Akkermansia strain and Nella, a new product derived from the microbiome of elite athletes.

During their experiment, the team will track and record changes to their biochemistry using everything from Biomesight kits to Organic Acids tests and ProdromeScan blood testing, which measures hundreds of biomarkers related to neurodegeneration. To ensure their safety, an MD will closely monitor their progress. “Our protocol has been informed by our own research combined with the advice of experts,” says Tamara. “The last thing we want is to further damage ourselves by taking antibiotics, so we consulted gut experts Ken Lassesen, Simon Spichak, and David Esteban on how to protect and repopulate our microbiomes during the experiment.”

The team received input from over twenty other ME/CFS experts, and late last year, Tess had the opportunity to meet Robert Phair and discuss his IDO metabolic trap hypothesis. “I had all my notes spread out on the table and he told me how cool it is to see patients doing work like this. That’s something I love about this project. The ME/CFS community, even world-class researchers, supported us from day one. It’s exciting to be doing this together as a team.” 

Support

Tamara and Tess struck out on their own and, under the care of doctors, and in collaboration with gut experts, are conducting an in-depth gut restoration mini-trial on themselves. Not only will we get real-time reports on their symptoms, but sophisticated tests will also reveal how this approach affects the physiology of their gut and other systems. They are true pioneers.

Investors believe Remission Biome is worth backing, too. In January, the scientific investment fund Balvi announced a $24,000 grant to the Remission Biome team. This game-changing money has enabled the team to take their research to the next level. The patient-scientists have a number of hypotheses as to why antibiotics produced their original remission events, but their main goal with this first experiment is to attempt to reproduce the shift. If they can successfully replicate it, they’ll begin working to better understand the mechanism of action and unpick how these remission events shift the body’s baseline to better health. 

While patient-led research is sure to attract criticism from the conservative medical community, forty years of non-existent funding and an almost complete lack of interest in ME/CFS has left patients at a boiling point. With their strong scientific backgrounds – they have over fifty peer-reviewed papers published between them – Tamara and Tess are well-equipped to run a robust mini-trial. One that could tease out potential areas of interest for full-time researchers to study more deeply. Ideally, they’d love to design a simple microbiome protocol that patients with ME/CFS and other post-infectious diseases could use, with the support of their healthcare providers, to improve their baselines. 

“The ME/CFS community are the original disruptors and innovators because it’s always been up to us to find ways to improve our quality of life. Remission Biome follows in the footsteps of giants, like the many people on Phoenix Rising, who learn as much as they can about this disease, share information generously and trust their intuition when it tells them to pay attention to their body’s behavior. The patient community has supported us from day one and we’re very excited to give back by contributing to the knowledge base on ME/CFS.” Tess and Tamara

Follow Tess and Tamara on Twitter and visit their website for more.

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