+100%-

Another “ME/CFS moment” – a sign that things are looking up for ME/CFS and related diseases has occurred. It’s the emergence of the STAT earpiece and it just goes to show that we never know what things are being worked on right now that might make a real difference in our lives. The June 13th press release said it all: “Today, STAT Health emerges from stealth”. It certainly did.

This little earpiece (it is very small) isn’t about hearing better:  it’s all about getting closer to a key aspect of ME/CFS, postural orthostatic tachycardia syndrome (POTS) – “blood flows to the head”. In fact, it was built directly to support people with long COVID, ME/CFS, postural orthostatic tachycardia syndrome (POTS), and diseases of orthostatic intolerance.

Smaller than some invisible-in-the-ear-canal hearing aids, it contains advanced optical sensors, an accelerometer, a pressure sensor, temperature sensors, AI edge computing, multi-day battery life, and even a micro solar panel. It can be worn in the ear 24/7, including while sleeping and showering. Because it sits above the ear canal, it shouldn’t interfere with hearing devices, etc.

The earpiece auto-detects changes in position, heart rate, blood pressure, and blood flows to the head and uses that data to create an “Up Score” to track time spent upright (walking, sitting, standing) and a “Flow Score” to help people with pacing and recovery. It should be able to quickly chart if you have a sudden increase in heart rate (POTS) or decrease in blood pressure (orthostatic hypotension).

It’ll be able to produce readouts that you can share with your doctor. Over time, like the Apple Watch and Oura Ring, the earbud will be able to use apps to provide personalized coaching “to promote healthy lifestyle choices, such as informed hydration/salt intake, and paced rehab”.

We know that walking, standing, and even, at times, sitting upright can produce problems with brain blood flows in people with ME/CFS and similar diseases. What each of us can’t tell is when those blood flow problems begin to occur and how well they correlate with crashes. Because this device appears to be able to detect changes in blood flows before symptoms occur, it could be invaluable in pacing.

Tilt table testing at Johns Hopkins revealed that the device was far more effective at picking up blood flow abnormalities than clinical ECGs and blood pressure cuffs. It actually detected blood flow drops 2-12 minutes before people with OI fainted.

We recently saw that confocal laser endoscopy is able to pick up signs of inflammation and gut leaking hours before the symptoms show up. One wonders if this little tool might be able to pick up the earliest warnings that post-exertional malaise (PEM) is looming.

We’d all like to be upright as much as possible, but knowing when too much is too much can be difficult. Some days we can do more. Some days we can do less. Using real-time data to understand how much time upright can each of us get away with would be a huge blessing. Other than heart rate monitors, we have no good pacing tools that can tell us minute by minute what’s going on in our bodies. If this little earpiece could help us finetune that, that would a godsend.

It’s not going to cure ME/CFS, POTS, or  long COVID, but improving quality of life, avoiding crashes, less pain – more pleasure – the possibilities are great. Let’s not forget the personal validation that should come with being able to see and show others that one’s symptoms track with reduced blood flows to the head.

What about testing supplements and drugs? Could we use it to assess the immediate impacts of food, supplements, and drugs? How about the impact of stress? Do upsets, worry and fear reduce blood flows to the head? Or do uplifting situations or calm states of mind improve them? Time will tell.

A Long-COVID Boost

Things like this device show up when the right person sees what’s missing and gets committed to fill in the gap. After cardiovascular issues were causing his father to have a problem fainting, Daniel Lee, a co-founder of the company, resolved to create a device that could warn his father if he was about to faint.

From there, some serendipity showed its face. Lee’s interest widened after he observed young women doing tilt-table testing for orthostatic intolerance at Johns Hopkins. Then when long COVID showed up, he realized that the pool of people who might be helped by the device had just “exploded”.

Lee, who had invented and helped bring to market the Bose Sleepbuds, which provided soothing sounds at night and during sleep (they have been discontinued) – already had a leg up on miniaturized devices.

This new device is light years more complex than the Sleepbud. Lee said it took him and his team 3 years to build the “most advanced wearable” in the world.

Its great grace is its location on the ear. Because the head doesn’t experience as wide a range of movement as does the wrist, Lee calls the ear – which, of course, lies close to the brain and the major arteries that feed it – a “biometric gold mine”. The problem until now has been making a device that’s small enough and comfortable enough to track movement, heart rate, blood flow, etc.

The Great Question – Blood Flows to the Brain, as Well?

While the potential for effectively managing pacing using real-time data is immense, the real game changer may be in the earpiece’s potential ability to quickly and easily assess blood flows to the brain. We know that ME/CFS is, at its heart, a disease of orthostatic intolerance; i.e. it’s a disease that impacts blood flows to the brain. We know that because using newer, more sensitive technology, the Visser-Van Campen-Rowe team revealed that everyone with ME/CFS, whether they have POTS or OH or neither – suffers from reduced blood flows to the brain when they are put upright.

Low Brain Blood Flows and Orthostatic Intolerance Ubiquitous in Chronic Fatigue Syndrome (ME/CFS)

THE GIST

  • You just never know what’s going to pop up – what someone is working on right now that might make a difference in these diseases.
  • The STAT Health earpiece isn’t about hearing better – it’s all about getting closer to a key aspect of ME/CFS, postural orthostatic tachycardia syndrome (POTS) – “blood flows to the head”. In fact, it was built directly to support people with long COVID, ME/CFS, postural orthostatic tachycardia syndrome (POTS), and diseases of orthostatic intolerance.
  • Smaller than some invisible-in-the-ear-canal hearing aids, it contains advanced optical sensors, an accelerometer, a pressure sensor, temperature sensors, AI edge computing, multi-day battery life, and even a micro solar panel. It can be worn in the ear 24/7, including while sleeping and showering. Because it sits above the ear canal, it shouldn’t interfere with hearing devices, etc.
  • It auto-detects changes in position, heart rate, blood pressure, and blood flows to the head, and uses that data to create an “Up Score” to track time spent upright (walking, sitting, standing) and a “Flow Score” to help people with pacing and recovery.  It’ll be able to produce readouts that you can share with your doctor and even provide personalized coaching.
  • Because this device appears to be able to detect changes in blood flows to the head before symptoms occur, it could be invaluable in fine-tuning our pacing. Using real-time data to understand how much time upright can each of us get away with would be a huge blessing. Plus, one wonders if provocative testing of foods, supplements, and drugs could help us understand whether they are helping or hurting.
  • Plus, there’s the personal validation that could come with being able to see and show others that one’s symptoms track with reduced blood flows to the head.
  • While the potential for effectively managing pacing using real-time data is immense, the real game changer may be in the earpiece’s potential ability to quickly and easily assess blood flows to the brain as well as the head.
  • Having a direct physical marker of something that’s happening to the most important organ in the body could be a game changer for the credibility of diseases like ME/CFS, long COVID, POTS, and even conceivably fibromyalgia. Testing is underway to see if the device is able to accurately measure blood flows to the brain. If it is, the device could prove invaluable in research studies and clinical trials.
  • Lauren Stiles, the founder of Dysautonomia International wrote “this has the potential to improve the everyday lives of over 70 million people around the world living with various forms of dysautonomia. This is a win for patients!”
  • The earpiece will not require a prescription. An iPhone app has been developed – an Android app has not yet been. Pre-orders will begin in the fall of 2023. The company is “currently targeting a $50/month subscription rate that it hopes will come down for longtime users. You can get on the email list for the launch invite by going to this page. 

The technology they used, though, is not readily available. In fact, nothing in your doctor’s office can effectively assess blood flows to the brain in ME/CFS, but now comes this little wearable that can track blood flows to the head (via the carotid artery). The big question is whether its measurement of blood flows to the head can function as an analog to blood flows to the brain as well. If it can, that would really be something.

Despite its small size, the brain uses about 20% of the energy used by the body. If it can’t receive the oxygen and resources it needs, not only will brain fog going to be present, but it stands to reason that many other symptoms – fatigue, headache, pain, etc. – could affected as well. Imagine being able to cheaply and easily assess what’s happening to blood flows to the brain several days after an exercise study, or using it to assess the effectiveness of different treatment options. Time will tell just how far this miniaturized earpiece will go in helping us understand ME/CFS. POTS, long COVID, and others.

Peter Rowe – who has been immersed in orthostatic intolerance in ME/CFS and other diseases for decades – reported we should know soon.

“The Visser/van Campen team should soon be able to answer how well this in-ear device correlates with their more involved measures of cerebral blood flow. My sense is that if it correlates well with the Doppler measures, this device could be a huge advance for the field.

Having a direct physical marker of something that’s happening to the most important organ in the body could be a game-changer for the credibility of diseases like ME/CFS, long COVID, POTS, and even conceivably fibromyalgia. Lauren Stiles wrote:

“As the founder of Dysautonomia International, the largest patient advocacy organization for people with autonomic nervous system disorders, and as a patient myself, I am so excited to see this technology take off. Having real-time data on blood flow to the head during real-life conditions has the potential to improve the everyday lives of over 70 million people around the world living with various forms of dysautonomia. This is a win for patients!”

The STAT earpiece will not require a prescription. An iPhone app has been developed – an Android has not yet. Pre-orders will begin in the fall of 2023. The company is “currently targeting a $50/month subscription rate that it hopes will come down for longtime users. You can get on the email list for the launch invite by going to this page. 

Donation Drive Update

medical piggy

Health Rising’s “medical piggy” is pumped about a new way to validate ME/CFS, POTS, and long COVID.

I apologize for being so far behind in publishing the fundraising totals. All I can say is that the drive appears to be doing well and to give a big thanks to those who have supported Health Rising.

This blog represents a key theme for Health Rising to always be on the lookout for new possibilities that support all of us in living healthier and more fulfilling lives. The blog also represents the community nature of HR. As so many of HR’s blogs are, this one was triggered by a tip from a person with ME/CFS – Bob. So was the last blog published (Janet). Earlier this month, Jutta provided invaluable support for the Prusty blog and so it goes. Thanks to everyone who has contributed to HR in that way.

 

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