Another ME/CFS Moment Occurs
Another ME/CFS “moment” – a sign that things are changing for people with ME/CFS and related diseases – recently occurred. It’s coming right on the heels of our last ME/CFS moment – last month’s announcement of an earpiece specifically designed to assess the time spent upright with people with ME/CFS, long COVID, POTS, etc.
This is a kind of a big one – it’s the emergence of Metrodora – a new medical and research center focused entirely on neuroimmune axis disorders such as chronic fatigue syndrome (ME/CFS), fibromyalgia, dysautonomia, postural orthostatic tachycardia syndrome (POTS), and migraine.
Obviously, we need lots of these centers. They would fill a huge unmet need – and serve a huge population. If Metrodora – which aims to bring state-of-the-art research, testing, and treatment (and validation) to these diseases – can pull this off, we should see more Metrodoras in the future.
Metrodora – a 55,000 sq. ft. research and clinical center focused on diseases like ME/CFS, fibromyalgia, POTS, migraine, and others.
The title of an article on Metrodora – “Instacart CEO’s medical institute reimagines neuroimmune diseases” got it right and wrong. Yes, Metrodora is bringing a brand new (and very welcome) approach to these diseases, but you can’t really re-imagine an area, though, that has never been fully “imagined”; i.e. fully explored in the first place.
None of these diseases have gotten the attention they deserve. Despite the fact that they affect tens of millions of people in the U.S. combined, research and clinical centers are few and far between. It’s as if the American medical system simply decided that a huge swath of illnesses were not for it.
These “invisible”, female-dominated diseases, cause massive amounts of fatigue and pain but generally do not cause death (although some hope for it), produce multisystemic symptoms and problems, have few or no accepted treatment options, and get lousy funding. Metrodora co-founder Laura Pace MD, Ph.D. called them “a massive, neglected disease space that disproportionately impacts women”.
All have been kind of haphazardly and unhappily slotted somewhere into the medical firmament and that’s why Metrodora – which was named after the female author of an ancient Greek medical text, “On the Diseases and Cures of Women” – has such promise.
The Buck Stopped Here
It was probably only a matter of time before someone said the buck stops here and did something about it. It stopped with one of the top female entrepreneurs in the country, Instacart’s Fidji Simo, who found herself traveling the long, confusing, and ultimately lonely road through the medical system that so many of us know so well.
The Co-Founder of Metrodora and President of the Metrodora Foundation, Simo is the Chief Executive Officer of Instacart and was previously the Head of Facebook App. She was recognized by Fortune as one of their “40 under 40” annual ranking of the most influential young people in business and was #2 on Fast Company’s 2017 list of Most Creative People in Business.
Proving that illness doesn’t respect wealth, skills, or good fortune, it took her three years of searching before she was finally diagnosed with POTS in 2020 – a condition easily diagnosed with a tilt table test – but which is an utter mystery to most doctors.
A long search for a POTS diagnosis sparked Fidji Simo’s interest in co-creating Metrodora.
Calling her journey a “crazy diagnostic odyssey”, Simo said, “I was diagnosed with one of these conditions three years ago, bouncing from specialist to specialist, with no one really looking at the full picture. Going through the system, I felt like doctors were looking at me like a set of body parts. A lot of these [illnesses] are multisystem conditions, which means you’re falling apart from head to toe.”
Laura Pace, MD, PhD – one of Metrodora’s co-founders – agreed stating that “the current system is set up to care for people that have well-defined diseases with algorithms on how to treat them.” Patients with more complex disorders, she said, “can go from doctor to doctor, collecting diagnoses — all of which are wrong.” (Better diagnostic procedures are going to be a strong focus at Metrodora.)
Simo’s dysautonomia doctor introduced her to Laura Pace, who – also not happy with the state of neuroimmune illness in the medical system – had been considering starting a neuroimmune research center herself. Backed by $35 million in corporate venture funds, she, Laura Pace, and James Hemp PhD cofounded Metrodora.
In a recent YouTube video, Pace came across as a highly informed, precise researcher/doctor who believes medicine has just scratched the surface regarding these diseases. She, for instance, rejects the terms IBS and small intestinal bowel overgrowth (SIBO), believing the conditions are much more complex than those terms describe.
A Rheumatoid Arthritis, ME/CFS, and Fibromyalgia Aside
Pace’s breadth of knowledge came across when she described an intriguing autoimmune connection involving rheumatoid arthritis (RA). Despite the fact that RA can be associated with enormous fatigue, and exercise is often problematic, RA clinical trials focus entirely on the joints and never assess the impact of treatments on the fatigue that can affect functionality so much.
Pace believes the fatigue found in RA constitutes the neuroimmune side of it. Her conception of RA – bringing in the side of it which bears similarity to ME/CFS/FM etc – is welcome not just for RA sufferers but potentially for people with other fatigue disorders. (People with RA also have an increased risk of coming down with fibromyalgia.)
One recent study found that RA is an inflammatory “disease characterized by “parasympathetic autonomic dysfunction“. Exercise triggers both an unusual immune reaction and a hyperactive sympathetic nervous system response. (The author of the study said similar findings were showing up in long COVID.) Connections are clearly waiting to be made between other fatiguing diseases like RA and multiple sclerosis and ME/CFS/FM/Long COVID and others.
PathAI is one of the AI firms Metrodora is using to better understand these diseases.
A Hi-Tech Focus
THE GIST
- Another “ME/CFS moment” – a sign that things are changing for the better for ME/CFS/FM and related diseases – has occurred. It’s coming right on the heels of the last ME/CFS moment – the STAT earpiece that was designed specifically for these diseases.
- This is a pretty big one – it’s the emergence of Metrodora – a new medical and research center focused entirely on neuroimmune axis disorders such as chronic fatigue syndrome (ME/CFS), fibromyalgia, dysautonomia, postural orthostatic tachycardia syndrome (POTS), and migraine.
- Metrodora was co-founded by one of the top female entrepreneurs in the country, Instacart’s Fidji Simo, who found herself traveling the long, confusing, and ultimately lonely road through the medical system that so many of us know so well.
- If Metrodora – which was named after the female author of an ancient Greek medical text, “On the Diseases and Cures of Women” – can pull this off we should see more of these Centers pop up. One wonders why it wouldn’t be able to given the huge population of mostly women who aren’t finding much help at their doctors.
- Backed by $35 million in corporate venture funds, the 55,000 sq. ft facility will Metrodora will rely heavily on new tech, including AI-powered biobanking, remote patient monitoring, and collecting electronic health record data via EHR partner Athenahealth.
- Metrodora for-profit clinical arm plans to accept insurance and it also has a non-profit research arm.
- Metrodora aims to see 20,000 patients each year and share its datasets and samples with research organizations and digital health companies. Co-founder Pace said, “We’re creating a solution that I, as a practicing physician, always wanted.” Metrodora is located in West Valley City – a suburb of Salt Lake City, Utah.
- Interested in checking out Metrodora? Call (385) 430-1430
- Health Rising is not affiliated with Metrodora in any way.
Metrodora is using AI to understand how these complex multi-systemic diseases that so often fall through the cracks (because they are multisystemic) work. That includes working with PathAI, which uses AI solutions to provide diagnostic analyses of patient samples; Fabric Genomics, which will use AI to identify and prioritize new genome variants using its $1K complete whole genome test, NeuraLight to assist with diagnosis and monitoring, and Biofourmis, which uses analytics and wearables to help patients manage chronic conditions.
NeuraLight is one of those kind of head-shaking companies that is using new technology to do wild things. Metrodora will use NeuraLight and its “oculomotor profiles” – which can be assessed using a smartphone – to diagnose and assess the progression of disorders.
Metrodora has a for-profit clinical arm that plans to accept insurance and see patients with a non-profit research arm.
Metrodora aims to see 20,000 patients each year and share its datasets and samples with partners including research organizations and digital health companies. Metrodora’s emergence is another sign that diseases like ME/CFS, FM, POTS, and others are being taken seriously. May it be successful and may many more Metrodora’s show up.
Co-founder Pace said, “We’re creating a solution that I, as a practicing physician, always wanted.” Metrodora is located in West Valley City – a suburb of Salt Lake City, Utah.
Update
Or maybe it’s not the opportunity she wanted. Just a couple of months after Metrodora opened it announced that Dr. Laura Pace is no longer practicing at Metrodora. Here’s the communication from mid-September
Metrodora Institute
To our patients,
We are writing to share an important update, on September 13th, Dr. Laura Pace made the difficult decision to step away from her clinical practice at Metrodora Institute. Dr. Pace’s contributions to our medical community have been immeasurable, and her vision for what patient care could be has inspired all of us at Metrodora Institute. Her dedication, expertise, and compassion have touched the lives of countless patients, and we are incredibly grateful.
We also want to take this opportunity to express our heartfelt appreciation for each of you, our patients. Your trust in us, your active participation in your healthcare, and your commitment to your well-being are the pillars upon which our practice is built. You are not just patients; you are our valued partners on this journey towards better health, and for that, we are thankful.
As we move forward, we want to assure you that we are committed to the vision and mission that Dr. Pace set forth with Metrodora Institute. We are dedicated to upholding the standards of excellence in medical care that you have come to expect from us. Your health and well-being remain our top priorities.
To ensure that your healthcare needs continue to be met, we are fortunate to have a dedicated team of healthcare providers who are ready to serve you. Our outstanding physicians include:
- Dr. Anne Maitland – Allergy/Immunology Specialist Dr. Maitland brings a wealth of knowledge and experience in allergy and immunology, specializing in the diagnosis and treatment of allergies and immune system disorders. She is committed to providing you with expert care and personalized treatment plans.
- Dr. Joseph Berman – Primary Care Physician Dr. Berman is your trusted partner in maintaining your overall health and well-being. He provides comprehensive primary care services, including preventive care, routine check-ups, and management of chronic conditions, to ensure you receive the best possible care.
- Dr. Nada Hindiyeh – Neurology/Headache/Migraine Specialist Dr. Hindiyeh specializes in neurology and has a particular focus on the management of headaches and migraines. Her expertise will help address neurological concerns and provide targeted treatments to improve your quality of life.
- Dr. Erikson Yap – Gastroenterologist: Dr. Yap specializes in gastroenterology and oversees our endoscopy center, ensuring that you receive the highest standard of care for gastrointestinal concerns.
Additionally, we are proud to have a dedicated Neurorehabilitation Team who specialize in treating neuro immune axis disorders, with skilled professionals in:
- Occupational Therapy: Our occupational therapists focus on helping you regain and maintain your independence in daily life.
- Physical Therapy: Our physical therapists are dedicated to maintaining your physical function and mobility helping you achieve your goals.
- Speech Language Pathology: Our speech-language pathologists provide comprehensive care for speech, language, swallowing and cognitive difficulties, tailoring their services to your specific needs.
- Dietician: Our registered dietitian offers expert guidance on nutrition, helping you make informed dietary choices that promote your overall health.
We understand that you may have questions and concerns during this transition, and we are here to support you every step of the way. If you are awaiting notes and results, a member of our dedicated clinical team will reach out to you through the patient portal as soon as we have received your outstanding results and have finalized care plans. Our team will provide you with the necessary information, recommendations, and guidance based on your results.
For those requiring ongoing care, we will make every effort to ensure a seamless transition. We will either assist you in scheduling an appointment with another specialist within Metrodora Institute or facilitate a referral to an external provider if necessary. Your continuity of care is of utmost importance to us, and we will work diligently to ensure your healthcare needs are met.
Once again, we want to express our deepest gratitude for your trust, support, and partnership. We understand that change can be challenging, but we are confident that together, we will continue to provide you with the exceptional care you deserve.
Thank you for allowing us to be a part of your healthcare journey. We look forward to serving you with the same dedication and compassion that has always defined Metrodora Institute.
-Your Metrodora Team
Interested in checking out Metrodora? Call (385) 430-1430
Health Rising is not affiliated with Metrodora in any way
Well unfortunately as awesome as this is for the research and validation so many of us who have become completely disabled have no money or insurance to afford such a blessing. Still none the less, progress!
Yes, I really like this little string we have going. First there was the Visible app, then the STAT earpiece, and now Metrodora – all efforts producing something focused entirely on the ME/CFS/FM/POTS/Long COVID spectrum of diseases. I’ve never seen anything like that before.
Any connection with this and Bateman Home center, also in Utah?
Good question – I don’t know.
….my first thought as well…
No, they aren’t related
I made an appointment with Metrodora yesterday! After 18 months of post concussion syndrome and long Covid, I’ve tried an awful lot of things and I can’t say I’m really hopeful for change, but they’re accepting my insurance now so I think it’s worth a try.
I wonder if they will offer anything new. Good luck!
Please keep us updated on your experience. I would consider it, even though I’m NY.
I’ll try to remember to report back! I’m flying in from Oregon which is a lot closer than NY but yeah, travel is tough.
I’ve been going there for many reasons since they opened. It’s worth it! I see 3 medical professionals there.
That’s good to hear, Michelle! Are you local or are you traveling for appointments? Do you feel like they have real treatment options for you, as well as diagnostics?
Do you know if they offer telehealth or will at some point?
Michelle, I would also love to know more about your experience!
I was told Metrodoro was accepting my insurance, but many of the individual doctors are not contracted with the insurance. I think I’ll wait and see how that goes before I make an appointment.
I’ve been going to Metrodora since they first opened. I’d like to share my experience. I was referred by my neurologist. First, everyone I’ve met at Metrodora are kind and friendly. Second, when I share my health concerns, they not only listen, but they start developing a way to find answers. One of the things they do is meet once a week to discuss all of the difficult cases, at a round table with all of their key people. My experience is the people at Metrodora take me seriously and they are kind in their approach. It’s very different from the years of visits to other doctors offices.
On the very small downside, Metrodora is a relatively new company, and there have been growing pains. But if you look past that, they are amazing. And are already providing answers. For me, I have been diagnosed with Sjogren syndrome. And they are also looking into mitochondrial/dystrophy genetic disorders. They embrace the challenge of finding answers with professional enthusiasm.
Metrodora continues to hire top-notch medical talent to expand their pool of knowledge and experience.
As a patient, I strongly endorse Metrodora Institute and their staff.
That’s great to hear and thanks for sharing your experience 🙂
Hope you get a diagnosis & treatment!
How have your results been?
Now Bateman Horne and Metrodora, are both in Salt Lake City metro area.
I hope they build momentum for these diagnoses and treatments soon.
Even though there are a few ME/CFS specialists in Boston, most doctors here assume these illnesses are primarily psychiatric. They lose interest when psychiatric treatments don’t work.
Great to hear about this new venture! As I’m in the UK I do wish we had more things like this! But I am very pleased more research is taking place and hope in time positive outcomes will reach other parts of the world!
Thank you for the info, Cort. The clinic provides some hope. I called and left a VM. Praying they will accept me.
This is wonderful and heartwarming news, Thanks!
Amazing – I’m so grateful this is happening! Hope you’re ok after your move Cort!
All the best to them. Most importantly, I hope they can help lots of us.
But I think it’s also important that they can make money. Only then will our medical industry follow suit, and provide care for us.
There are so many of us, that it seems like there’s real money to be made, from testing and specialized care for us.
So why haven’t the medical corporations responded to such a large market, such a large opportunity for profits?
It’s a mystery.
But I hope that this example shows that money is to be made.
Only then will the medical industry follow suit.
Why is the location of the facility not mentioned until the last few paragraphs of the article? I would think that would be one of the first pieces of info readers are looking to learn.
I take it you are not close to Salt Lake City.
The purpose of the blog wasn’t just about this facility it was also about how such an unusual thing came to be and to provide hope that more will follow. i.e. I thought the backstory was important – so the location came at the end.
At least it wasn’t a very long blog – at least not by my standards (lol).
Agreed, Cort. As one of your overseas readers, it’s pretty irrelevant to me where this facility is in the US. But the fact that it exists gives me great hope!
Salt Lake City? Might as well be on the moon. It will take years to evaluate whether their system works for ME/CFS people; hope I’m still around then.
Hallelujah! Let’s hope this pans out.
Happy for any positive steps.
Anyone else disgusted by movie Finding Richar, portraying ME as no big deal? The protagonist wit ME dealt with her fatigue by popping a pill. What medicine helps ME? And she’d take a brisk walk outside. Really? Nice job minimizing our illness, thanks a bunch.
YES! Finally we are in the cinema portrayed as a person who bounces blithely to and fro! What a hit in the head! Was this made by someone who secretly believes ME/CFS is a joke?!
It’s actually important as we have so few opportunities in film and literature to explain the seriousness of ME. It is rare that doctors i encounter know even the basics. So disheartening. So misunderstood.
Sometimes, or quite often, do I wonder what is symtoms and what is disease or comorbidity.
And as the body is one I guess it is really hard to know! Ecspecially with these diffuse morbidities. I wondered which word to use there. 😂 Morbidity seemed appropriate. She speaks about fatigue with RA, we have so many disorders that have fatigue as the more crippling symtom.
And then this PEM. When people around me describe their fatigue it is very much like PEM, in different disorders/diseases. Do all these people really have ME, though they have all from stressinduced exhaution all the way to RA, EDS, MS, ME, Other autoimmune stuff etc?
Is it all, like with this company, a neuroimmune symtom rather than defining a disease? What is what, like?
Me ranting again! 😂
Thank you so much for posting this article Cort! I saw this and immediately considered going to this place. I went to a holistic doctor for a year, and she greatly helped my digestion, but couldn’t do anything to help my energy levels or other symptoms. So I decided it was time to move to the next doctor.
I’ve been sick for 2 and a half years and my CFS continues to get worse. I was accepted by a CFS specialist all the way in NY, but I live across the country so it was by phone call. The problem was she has so many patients I’m not getting the help I need.
I just got diagnosed with POTS so it was another reason to seek out Metrodoras help. My mom (I live with my parents) called and left a voicemail, called a second time right after and they answered. I’m going in September for 2-3 days and again in February to see their neurogastrologist.
Thankfully it’s only an hour flight. They were very friendly while making the appointments, and were able to easily access my medical records from other hospitals so I didn’t have to send them myself. I recommend giving them a call if you think it’s right for you.
Thanks for the report and good luck! Sounds like a great place to help with POTS. 🙂
I’m afraid at 72 years old and having ME, FMS, Sjorgrens, hypothyroidism etc, it’s too late for me. And I don’t think I could handle the flight. I can only walk a very short amount.
I use a scooter if I have to leave the house, which is rare. I’m in Central part of California. I’m anxious to hear more about this place and if they are able to help PwME.
What treatments do they provide? If I have to travel that far I would need more than just an understanding doctor. I would hope for something that brings improvement. Does anyone know what to expect?
following. Also curious what will be offered because the biotracking mentioned might require adhesives and of course with MCAS I’m super allergic. I don’t want to go all that way and not qualify for any treatments. Seems like that is a problem they will have to find a workaround for, though, considering they have Anne Maitland on staff and people like me will be there in droves being allergic to everything.
I was diagnosed with Multiple Sclerosis when I was 52 years old 4 years ago. The Bafiertam did very little to help me. The medical team did even less. My decline was rapid and devastating. It was muscle weakness at first, then my hands and tremors. Last year, a family friend told us about Natural Herbs Centre and their successful MS Ayurveda TREATMENT, we visited their website www .naturalherbscentre .com and ordered their Multiple Sclerosis Ayurveda protocol, i am happy to report the treatment effectively treated and reversed my Multiple Sclerosis, most of my symptoms stopped, I’m able to walk and my writing is becoming great, sleep well and exercise regularly. I’m active now, I can personally vouch for these remedy but you would probably need to decide what works best for you🧡.
Thank you for the information regarding the Naturalherbs Center and web address. Have Fibro/ME + a large number of other neurologic challenges since 1994. In 1996 went on full-time, disability benefits through my employment. Within the last 3 years have also been diagnosed with Lupus, POTS and heart problems. I am 76 years of age and continue to believe there will be progress made with diagnosis, protocols for the active issues we all face. I pray there will, also, be “cures” found for most (hopefully all) the issues. It is a bear being so tired and living with the almost constant pain. BUT….I WILL KEEP ON, KEEPING ON so they say (whoever “they” are!) LOL. Blessed be ..
Wonderful! Hopefully, it will not be out-of-reach for patients who need it.
I’m wondering if anyone else has developed Lymphedema along with ME CFS/FM? The fluid retention, weight gain and swelling has caused me severe problems. Chronic lung infections, open weeping sores on my legs and obesity. Is this a common problem or is it just me?
Reading about the herpes research (above) made me realise that I used to get herpes around my mouth and nose very regularly (every few weeks) from childhood through to when CFS/FM started for me. That was in 1990. Since then I have had it fairly infrequently, and it is becoming less frequent over time, just once every 5-10 years. I wonder if this has happened for anyone else?
Yes exactly the same with me. I used to get terribly large lesions on my lips. But having trouble remembering the last one. The last painful one I remember was pre Ross River Virus, when all my chronic pain and other neurological issues started, 20 yrs ago.
Are they treating post vaccine syndrome?
There is a strong overlap with ME/CFS.