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Richard Lewis Profile picture
@Z3R0Gravitas
Mar 6, 2024 • 8 tweets • 4 min read • Read on X
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My collection since end of 2023.😜

OK, so I only use the Omron BP cuff for get-up readings, but the other 3 (Fitbit, Garmin, Visible) I've continued with, for different metrics.

Possibly a little 'extra', with all the graph posting?😳 But I draw the line at Oura Ring!
1/n 🧵?
Image
So what is each best at? 🤔

1️⃣ Fitbit Luxe (£90, no sub):

✅ Tiny. Sleep structure more believable. Daily RHR is my longest running metric.

❌ App inflexibility. Only 5 day battery. My #non24 causes HRV nonsense data & missed sleeps. Peak HR missed:
2/n
2️⃣ Visible Plus (£50 + £15/mth):

✅ HR accuracy matches pulse oximeter:

Great for #MEcfs pacing even with #POTS HR spikes. Tagging system. Most comfy. Enthusiastic #pwME devs.

❌ Expensive for feature set & hardware. <20h batt. No sleep tracking.
3/n
3️⃣ Garmin Vivosmart 5 (£100 no sub):

✅ Nice app layout/tweaks. Battery ~10 days (2 with all-on oximeter). #ME popular Body Battery knows when I ate porridge?!

❌ Continuous HRV 'stress' is black box mystery algo. Bigger, uglier. Sleep track sussy.
4/n
4️⃣ Omron EVOLV wireless blood pressure cuff (£86). Bought to log 'morning' lay➡️stand readings easier, not processed recently:

✅ BP, obv! Simple. Graphs in-app & exports to others.

❌ App slow doesn't close drains phone. Averages 2 readings.
5/n


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To add my phone only (Android) tracker apps:

5️⃣ Pedometer (free):

✅ Better (more believable) step count than Fitbit (Garmin closer, still high).
❌ Adverts take a few seconds to clear (viewing graphs to copy to spreadsheet, syncs to other apps too).
6/n
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6️⃣ Welltory (free, £30/y): platform wants to suck up all your health data. Free phone cam HRV check-ins.

✅ Some metric blips reflect symptom/supp changes.😶

❌ Huge clutter, upgrade pester, 12+ mysterious HRV variants (pro) show contradictory wiggles!
[Details in ALT text] 7/n

Home screen feed. What a mess! 40% off lifetime subscription constantly advertised in pro version with yearly sub! I used IFFT (paid) to automatically import data including Tweets and Spotify is linked too. So I should be able to export all this data some time, for spreadsheet analysis. Built in recognition of patterns between metrics is hot garbage.
"Most reliable" latest results screen. My health is always 100%.🤷 But stress and energy swing back and forth in somewhat meaningful ways. In response to overdoing it, sometimes. But mostly from adjusting electrolytes (Inc spreading calcium doses) and starting to correct a B2 deficiency. [Only the above show in the free version, I think.] ANS Balance - seemed to correctly show me as PNS dominant, most the time. And now with SNS on the rise, as feeling more energetic/wired. Coherence. 🤷 HRV Score - seems like a fairly solid HRV baseline, as meaningful as any. That is to say, ...
All the variants of HRV mathematical calculation give insight into the use of different standards by other trackers. Eg SDNN. But are too much to make sense of here, in total. And too prone to noise, even from carefully timed morning measurements, only. It's cool that the (red line) heart rate graph shows how it increased and decreased subtly with each breath during your 2 minute camera reading.
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More from @Z3R0Gravitas

Richard Lewis Profile picture
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
Richard Lewis Profile picture
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.
Image
Read 14 tweets
Richard Lewis Profile picture
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
Richard Lewis Profile picture
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
Richard Lewis Profile picture
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
Richard Lewis Profile picture
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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