Richard Lewis Profile picture
Aug 1, 2023 21 tweets 10 min read Read on X
I was lucky enough to be offered @visible_health's VisiblePlus+ early access program, for better monitoring #LongCovid #MEcfs #POTS.

Here's what I know:
• Polar Verity Sense arm band.
• UK only initially, US next.
• £65 buy in includes 1 month subscription at £15.
🧵 1/n Image
Harry's introductory video gives an overview of the new service:
• High accuracy HR data all day (not in sleep).
• Better morning stability readings.
• Real time alerts.
• Pace points to budget activity.
• In development: UpTime & OI HR changes.
2/n


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The Polar Verity Sense device on manufacture's site:
• 5 gram puck.
• Clips into provided armband.
• Polar sell swimming goggle clip, so it'll work on various sites.
• Optical sensor, like watches (not ECG), but less movement noise away from wrist.
3/n polar.com/uk-en/products…
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• May need charging every day.
• Long range (to phone), or logging data without it.
• Polar explicitly offer an API and SDK for 3rd party developers (like Visible), so a handy choice, I guess.
4/n

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The @QuantifiedRob Scientist reviewed it 2 years ago:

It seemed to have good heart rate accuracy. Close to his benchmark device: a Polar ECG chest strap.

So I'm hoping that it will do far better than my Fitbit Luxe, which misses sudden peaks/drops.
5/n
I'm a Visible noob, only tracking my morning stability for 4 weeks. Manually copying values to my spreadsheet (no export).

I like the powerfully simple design, compared to eg Welltory's clutter. But that maybe takes more reliable camera readings & insightful extra metrics.
6/n Image
So springing for offer was a bit impulsive. And I'm not keen on such an expensive (£15/mth) subscription, unless it provides very big value.

But if it doesn't suit me, I can cancel after a couple months and still have an fully working £86 device for cheaper than retail.🤷
7/n
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I wanted to hop aboard the Garmin or Oura band wagons. But I think I'd find their devices uncomfortable. Other issues too.

Visible is explicitly tailoring its product to our illness needs and has an exciting energy. And the team were very responsive, even over the weekend.🙂
8/n Image
No official blog about this yet, by the way:

And I'm expecting a 2-3 week (or so) wait for my device. But the app is already offering to use it, heh.

Those more experienced users, or who've been following development, what do ya think..?🙂
9/n makevisible.com/blog
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I'd not realised that some patients (also in the UK) have been trying this out for many months!

Good post here about using the band and pace points system to see excess exertion from showering:
10/n
My arm band kit came in the post yesterday, as I was told; free month started same day.

Sensor small and feels very light. Could prob attach with a plaster.🤔 1h to charge, ~50% at my bed time. Easy setup.

Band slightly noticeable when flexing bicep.😅 Slipped down twice.
11/n

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I've left all settings on default, for now. <60bpm resting, <99 exertion, >99 over-exertion.

(I'd been targeting 65 & 80, previously.)

4 days of data before I can set pace points budget.

Already useful to see length & height of activities. (Doing too much today.)
12/n Image
Quick side-by-side of Visible's (in app) Polar Verity Sense sense heart rate data (top), for me yesterday...

Verses my Fitbit Luxe (displayed in Cardiogram, bottom).

You can see the Fitbit is often clipping ~20bpm or so off the peaks. Visible much closer to true.🙂
13/n Image
Zooming in on my first quick pop out of bed, we see it's not a lack of temporal resolution, on the Fitbit. That's ~5 seconds, natively.

Visible bins into neat 1 minute intervals. I'm guessing each shows the max HR reading in that minute..?

Fitbit app (image 2) has no zoom.
14/n
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Comparing the @visible_health band to my cheap oximeter, I think it's roughly comparable.

But Visible has a 5 to 10 second delay (see video).

Maybe that buffering period is software processing or the Polar device only sends data in intermittent bursts, to save power..? 🤔
15/n
▶️ Update: I failed to add to this thread or make a further one, but have been posting a lot of graph screenshots for various reasons (search link):
16/nx.com/search?q=from%…
I've just posted a quick review thread of the new FUNCAP27 monthly assessment feature (doesn't need subscription):
17/n
Overall, I'd been intending to cancel my VisiblePlus subscription, because £15/month is steep for:
• Not much use of pacing alarms.
• 'Stability' seems to mean little for my function that day.
• Can't think of a major useful data insight.🤔 Although many curiosities.
18/n. Visible app Trends screen, comparing Stability score (top) with self assessed fatigue (bottom).   Not seeing any obvious correlations between this and other metrics, for me.
But I don't know if free Polar (band) app will give useful HR tracking utility & I like:
• Arm band's so comfortable I forget to take it off.
• Contributing input/support.
• Still spend time daily annotating activities, seeing idiosyncrasies, eg:
19/n
• Initial morning HR peak (and general manual graph inspection) give good idea of (POTS-ish) HR behaviour to pace day.
• Maybe new features will make it more personally useful.
• Addicted to having the long baseline data (just over 6 months so far).
20/n
Example annotated daily graph. Slightly exceeding pace points budget.   Which is usually just from day to day variation in HR rises. Rather than rare physical overexertion or stressors.
Trends comparison between daily total Pace Points (top) and HRV (bottom).  The long term arc of increased HR (and lowered HRV) I ascribe to environmental exposure issues (toxins/allergens) following a disastrous use of a ozone generator in my bedroom (now mostly abandoned).
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More from @Z3R0Gravitas

Jan 20
1/
New Belgian study findings consistent with key part of BornFree disease model for #MEcfs, #Fibromyalgia, #LongCovid, etc: we're chronic morphine producers!?!

They found downregulation of μ-opioid receptors, via increased methylation of promoter genes. My annotation on Josh's figure 13 diagram, specifically made to illustrate this issue. From: https://bornfree.life/2024/2-3-4-rapid-withdrawal/
2/
I saw this paper via another great thread by @mecfsskeptic (linked above) explaining its shortcomings too.

It appears entirely independent, not mentioning aspects modelled by Josh (or experienced by participants) as inhibiting ALDH breakdown of DOPAL, etc... Screenshot from the paper:  "In conclusion, patients with ME/CFS and FM demonstrated significantly increased methylation in the OPRMI promoter region compared to healthy controls. This strengthens our hypothesis that the opioidergic system may be dysregulated in these patients. However, further research must reveal how our findings tie into the complex underlying ME/ CFS/FM."
@mecfsskeptic 3/
Including, depleted ALDH enzyme co-factors: NAD+, zinc, magnesium, molybdenum ...

And substrate inhibition via acetaldehyde from microbes: eg Candida, Aspergillus (both common OAT indications), H2S producers (eg B.Wadsworthia, in BiomeSight), H.Pylori, Bartonella, etc.
Read 12 tweets
Aug 1, 2025
1/ IgG (antibodies) food intolerance panel - my first yearly test since major #MEcfs improvements. #MEcfsEgress?

a) Overall far fewer reactions detected than a year ago.
b) Dairy antibodies finally gone after 12 years of exclusions!
c) Reactions again cover suspect foods... Partial screenshot from the first results page of this year's IgG food intolerance screening... Circled in green is milk, where anti-bodies finally fell... Tick in red for egg whites, which have higher antibody reaction that I've seen before, but mostly milder reactions... Most tested substances showing no reaction at all. Making sense as I'd mostly not eaten any of them and those (like salmon) I had shouldn't cause reactions, necessarily. Not if the gut is sound.
2/
d) But reactions haven't totally taken me out of action the next day (as previous years).
- Eggs: maybe coincided with environmental reactions, too.
- Macadamias : suspect big bag went rancid/moldy and caused mild food poisoning.
- Pineapple: no idea (no fruit mix or enzymes). Page 1 of this years IgG antibody blood test screen. Strong reactions for egg whites, macadamias, sesame (not eaten)...  Mild reactions for some foods eaten: coconut, pecans, apricots....  And mild reaction to some definitely not eaten for a long time: cow's milk (beta-lactoglobulin), brazils, chickpeas.
Page 2 of this years IgG antibody blood test screen...  Strong reaction to pineapple (not eaten). Not sure if cross-reaction or some testing artifact...  Mild reactions to (not eaten): tangerines, avacado.
3/ Last year's results for comparison:

Different layout, with the second page (above) previously spread out over 10 pages, awkwardly. Last years results, showing a wide range of mid-level results for foods I'd mostly not eaten in very many years. A few I had.
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Read 14 tweets
Jul 10, 2025
1/ My highlights from the very well run webinar of @PatientLed funded study results on #MEcfs & #LongCovid.

Interesting patient directed funding + colab design. But I've focused more on science titbits. See also @IsabelRamirezRD live-tweeted thread via:
@patientled @IsabelRamirezRD 2/ Braeden Charlton - Long COVID & MEcfs:
- Poor oxygen extraction, earlier lactate (& steeper HR slopes).
- Retain muscle mass vs deconditioning = severe atrophy.
- Poor mitochondrial function vs deconditioning = loss of mitochondria.
- Basement membrane thicker (biomarker?). Presentation slide showing differences between patients, controls and deconditioned subjects.
Presentation slide about upcoming projects. Hints about thicker basement membrane (or muscle tissue) and narrower lumen (of eg mciro-vasculature?) came up as a question afterwards.
@patientled @IsabelRamirezRD 3/ Dr. Caroline Dalton - Microclots:
- Recently infected have my clots than patients without problems.
- Counts normally take ~1 year to fade.
- Only half of LC show high counts (not sensitive marker).
- Meds reduce clots, but often not symptoms.
- Clots indicate inflammation. Image
Read 14 tweets
Jun 4, 2025
1/ Overview of my #MEcfs improvements quantified! #PartialRemission #MEcfsEgress

Context: I've had moderate ME for a decade, gradual onset worsening CFS since teens.

tl;dr - major improvement contributors:
- BornFree minerals (half into stage 1).
- Environmental/mold avoidance. Over 2 years of data. Productivity (left vertical axis) and steps (right vertical axis) graphed together with basic annotations (year starts marked).  Steps shoot up from a nadir of under 1k per day to around 3k at the start of this year, where they've plateaued. From Pedometer, an app on my phone (I take everywhere). My most accurate step count. This is close to my limit, avoiding mild (same-day) PEM.  "Productivity" is (for me) synonymous with having viable cognitive/executive function (my biggest problem) and a lack of physical malaise; I start doing something (semi)useful soon...
2/ More discussion in ALT texts!

Above graph shows most tangible metrics:
• Productivity - almost 2x since pre-Covid1 baseline.
• Step count - up 3x, resuming daily walks (paused a decade).

Down-thread: Improvements in HR rise, FUNCAP, weight... Unroll & blog version at end. Table of contents: - Annotated graph timeline - Pacing not pushing note - Non-24-hour circadian fix - Weight regain - FUNCAP breakdown change - Other improved stats (crash hours, music enjoyment, physical tasks, BMs, gassiness) - Orthostatic intolerance HR & BP rises (POTS/OI). - BornFree protocol, supplements, diet - Mold/environmental avoidance - Personal comments, requests - Tracker sheet overview - Thread reader unroll & blog link
3/ A much more detailed version of the first graph (same 830 day period). I think of my recent history in terms of the landscape of this productivity plot!

More recent improvements dwarf those I made a fuss about in my post-covid analysis threads: I've annotated the starting times of most interventions that I've stuck with, or that had a big temporary effect.  Light blue is "good" and orange "bad". The ones I'm sure were most significant are circled. Some uncircled are likely to have been quietly having a major effect over time (eg B9 - folinic acid).  Major features are: - Two acute covid infections, with the second plunging me very low for a month or two. - The ozone generator disaster, that left me stuck into the spare loft conversion bedroom (with my original causing me flu symptoms and burning parosmia). - St...
Read 34 tweets
Dec 10, 2024
Insights on my new symptoms please!?🙏

Mostly: environmentally triggered sleep transition glitch - something pushes me firmly away from the moment of unconsciousness, etc.

Low on room options, clothes, sanity! Unsure how much is mold/chemicals/dust (& supps). Overwhelmed…
1/n Image
… trying to figure/arrange many things. Awkwardly living, day-sleeping, on my parent's sofa for a month. Worried about losing this refuge.

Any thoughts/questions welcome, even if covered in my kitchen sink information approach, below. (Getting things straight for me too.)
2/n • Details of symptoms: - Reaction - Go to bed fine & sleepy, but instead of (usually quick) nodding off, I get pushed back from that transition. With varying co-symptoms. Or at minimum woken an hour or few later. Overly alert, then very fatigued and miserable later (sleep loss + neurotransmitter swing?).  - Urine production and GI movements sped up 2-3 times right after sleep-glitch (without diarrhoea). Several toilet visits during expected sleep time. - Resting heart rate ramps up (55 -> 70bpm ish). Sustained for a day, declining over a few. But standing up HR is not much higher (than usua...
Full details in ALT texts. In short:
• Sleepy *then* wired after bounce.
• Kidneys & GI overdrive (weight OK).
• Reclined heart rate up ~20bpm.
• Internal vibrations (proportional).
• Lip numbness (brief, slight).
• Overactive then exhausted, miserable.
• Parosmia.
3/n - Internal vibrations. Mild afterwards (electrolyte gradients?). Or in the worse case, briefly intense acutely in chest/neck/head during build up to an unconsciousness rebound (repeatedly). - Sometimes: briefly numb lower lip and/or pre-mouth ulcer lumps pop up a bit in cheeks. (Hypoxia, viral activation?) - Energy and motivation initially up (wired, agitated & snappy at worse) but then fatigued and awful later if no sleep. Some dark/hopeless thoughts. - Weight - lost 1kg over first week (half regained). But often weigh in just as heavy in morning after increased urination. (So sometimes re...
Read 20 tweets
Oct 14, 2024
My notes on @KatBoniface's @RenegadeRes lightning talk. YT vid linked below. Covers:
• #Glutamate (Glu) dysfunction types: excitotoxicity vs hypometabolism.
• Glu transporters (GLAST, GLT-1), aspartate.
• Causes: #TBI, #LC, etc.
• Relation to #ADHD, #autism, not epilepsy.
1/n
Glutamate (Glu) researched for 30 years in #MEcfs & related diseases.

Main focus on excess release = high inter-synaptic levels -> excitotoxicity.

Which causes cell death and hypersensitivity symptoms.
2/n
Glutamate is a key regulator of metabolic & immune functions.

Glu used as fuel by glial brain cells that recycle it for neurons.
3/n
Read 17 tweets

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