ME/CFS Improvement Metrics - 2 Years of Tracker Data Graphed (Part 1)
[Blog post copy for these social media threads: Twitter (ThreadReader), Bluesky, Mastodon.]
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.
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| Over 2 years of data. Productivity (left vertical axis) and steps (right vertical axis) graphed together with basic annotations. Steps shoot up from a nadir of under 1k per day to around 3k at the start of this year, where they've plateaued. Pedometer is an app on my phone (I take everywhere) that is my most accurate step count. "Productivity" is (for me) synonymous with having cognitive/executive function (my biggest problem) and a lack of physical malaise. Example scoring: 1 productivity = cooking for myself double dinner (minimum for ongoing survival, with food intolerances). +1 (so 2 in total) = having a shower, too, OR one laundry load OR writing a large email or medium twitter thread. +2 = attending a medical appointment in the next town (being driven). |
2/ Above graph shows most tangible metrics:
• Productivity - almost 2x since pre-Covid1 baseline (= 3x discretionary tasks).
• Step count - up 3x, resuming daily walks (paused a decade).
Improvements in HR rise, FUNCAP, weight, etc, down-thread...
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| - 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.
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| 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). - Step count slowly slides down while in this room; spare room ironically had (I think) a bigger mycotoxin problem (rotten roof gable ends). - Then steps shoot up after moving to the livingroom sofa (due to insomnia reactions upstairs). - Step increase may start just before, with trace mineral & vitamin. - B2 increased laundry, etc, scent/chem sensitivities, previously. Replenishing nutrients is often double-edged. |
4/ All above annotations are listed in this table. Maybe easier to parse & gives exact dates (splitting some of the labels):
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| You can take a copy of this Google sheet to re-order it by most significant, etc. |
5/ Quick point: my step count began increasing *before* I started daily walks. Not because of them.
I've never pushed activity/exercise & accommodating to more movement felt quite natural & quick.
I reached a plateau, around 3k steps, I had to back off from (mild PEM).
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| Plotting daily pedometer step count (from phone app) vs step count from just walks outside the house. This shows that my step count had already nearly doubled before I even started going for walks. Just moving more freely. It is a pleasant use of an already extended physical envelope. With advantages for lymphatic stimulation, light exposure (UV, NIR, visible eg circadian effct), mental health wellbeing. |
6/ A huge knock-on win has been fixing my #non24-hour circadian rhythm. Held steady for the longest time since university (2008), or before.
Something (minerals, avoidance, antihistamines..?) has let me tolerate melatonin. Not destroying next-day function. Dopamine suppression?
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| Sleep tracking graph. Later times of day go upwards and later dates head rightwards. My norm has been a roughly 16 day cycle; 1-3 hours later each day. My breakfast, dinner and bed times followed steep upward slopes (colloquially a "staircase plot" in the non24 community). "Best effort" attempt to hold my rhythm in place was sleeping on the sofa in the run-up to Christmas (a lot of pressure). And still couldn't quite hold it. The progression abruptly levels off with restarting melatonin, to around the same time every day. Albeit delayed times. Much more manageable! Eg: less issue with parents having to be quiet in the adjacent open plan kitchen. I've continued to struggle to pull my wake time earlier, with limited success. A major issue is now my dad's bedtime, as he uses the living room until ~2am, before creaking to bed above. Also still needing about 2 hours for my body to wake up enough to stay upright. But this time can be quite productive, laid down on my phone. |
7/ I use the trick of taking melatonin 6h before desired bed (that I suspect might work for DSPS too): Twitter.
Oddly, the recommended 0.3mg dose still wrecks my next day function and mood. But 3-5mg *or more* is fine.
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| Graph of my body weight in kg measured on digital scales at the same point in my get-up routine, every day. Verses productivity (for context). I eat literally as much as I reasonably can. A high (meat) protein balanced diet with two large dinners per day + small breakfast. But intolerances limit food choices and snacks a lot. Low histamine, oxalate, goitrogen, FODMAP and no yeast, wheat or dairy (repeated reintroduction attempts failed). There's a small increase in weight after B9 + zinc. (Methylation -> cell creation?). That stalls back down with the tumult of sleep-bounce reactions (they came with kidney and GI overactivity). The decisive increase follows stabilisation. Or maybe the low dose antihistamines (start of December)? Loratadine only suppressed mild congestion. Cetirizine (delayed effect) promoting sleep. I'd suspected the silicon (bamboo extract) of helping weight. It is supposed to help sequester excess acetaldehyde, aluminium and support various processes, tissues. |
8/ Weight regained with nutrients and/or mold avoidance? Up from borderline 'underweight': 54kg at 173cm. Without notable dietary changes.
I'd lost 2kg in each acute Covid infection. A further 2kg with worsened fructose intolerance after 1st. Then stuck lower after 2nd (worse).
9/ FUNCAP (function metric) increased from low-moderate to mild? Having been mostly pre-limited by fatigue, weakness & executive dysfunction, more than PEM.
I don't feel the (eg) "being upright" score captures how disabled I still am. And encumbered by my health regiment, etc.
I don't feel the (eg) "being upright" score captures how disabled I still am. And encumbered by my health regiment, etc.
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| Visible app overview of monthly check-in scores for the whole time I've been using them. Executive dysfunction from fatigue, plus daily weakness 'crashes' (after food) had been my main limiters. Kicking in before I can worry about PEM. Which I seemingly only got from physical activities. Not the cognitive ones (that I was able to do). Note that despite moderate functional impairment, my symptom burden has been quite low. For which I'm thankful. When they have kicked in, I've been very motivated to find supplement fixes and accommodations. |
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| Roughly worse to best check-ins, compared side-by side (my image combining). Note that even though I score very high for being upright, I still spend around 2/3rds of my days sat with feet up or laid down. Various other questions fail to get at my issues too. |
10/ Also improved:
- 'Crash hours' (when too physically/mentally slumped to function).
Note: my graphing sheet runs a basic statistical correlation between the two sets of data selected. Also with offsets of up to ±5 days, to look for causation. Unsurprisingly strong link here.
Note: my graphing sheet runs a basic statistical correlation between the two sets of data selected. Also with offsets of up to ±5 days, to look for causation. Unsurprisingly strong link here.
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Correlation scores a 0 to 1 or -1 for negative correlation. ±0.3 is my heuristic for meaningful significance (not taking into account amount of data points compared). Crash hours were originally just the number of hours between breakfast and cooking dinner where I didn't have the executive function for any top-down activities. Or the physical strength. After eating dinner was almost always a write-off regardless (watching a show, light reading at best, social media scrolling). But now I'm kind of including that time too, because I am often able to do constructive tasks after main meals. Also, I only have a couple hours between breakfast and dinner, due to circadian adjustments removing my extra hours. Note the drops in crash hours in late 2023, from NMN and then B2 (while they worked). Then again in late august 2024, around the tie of starting extra zinc ionic drops (and other things, see above). Before more decisively falling away with mold avoidance, etc. Spiking up with reactions, or course. And swelling a little with trying DIM. |
11/ Scoring scales & details in [ALT] texts.
- Music enjoyment way up.
- Physical tasks up.
- BMs back to better GI consistency (food changes were also added eg chia seed).
- Gassiness trends upwards roughly in line with BM and general improvements (gut biome change?).
- Music enjoyment way up.
- Physical tasks up.
- BMs back to better GI consistency (food changes were also added eg chia seed).
- Gassiness trends upwards roughly in line with BM and general improvements (gut biome change?).
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| 'Music joy' clearly trends up with function. Maybe indicating that both
are related to improved neurotransmitter function (particularly dopamine
and norepinephrine). Qualitatively, I've also been hearing new details
of audio texture and lyrics I'd missed for decades. Details: I listen to my usual Spotify playlist of ~3k curated mostly liked songs. Rating scale (highest across day): 1 = can listen to music. 2 = "turn it up". 3 = "hell yeah!" feels, dancing. 4 = very intense emotions (rare), etc. |
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| Physical task examples: 0.3 = putting grocery delivery away; watering all my plants; shaving (although I don't particularly count that now). 0.5 = unload dish washer; very short vacuum clean of kitchen. 1 = shower & hair dry; laundry load (tumble dried); vacuum full kitchen and hall; remove and replace bed sheets (when I had used a bed); weekly Sainsbury's shop (when I used to go). 2 = 2h shopping trip; hospital appointment (being driven). Note that physical tasks went up *as well as* steps (and walks). The big spike was a lot of (ultimately futile) effort to make space to go upstairs for Christmas. Also (failed) laundry attempts (not tolerated). Then more cognitive tasks dominated, eg: figuring out a new laptop, research, now this thread, etc. |
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| BM = bowel movements. Bristol ratings score recorded, with 4 being the ideal middle ground. Harder stools correlated with slower transit & bloating. Which I thought started after tweaking electrolytes in summer 2023 (with too much sodium salt, then potassium). And maybe TUDCA after that... But! I've only started recording it after consistent problems, which coincides with moving into the more mold affected loft bedroom. So possibly another indicator of that. |
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| Gassiness - is a somewhat subjective rating from 0-2 (in 0.5 increments). More beans were eaten, but the correlation isn't overwhelming. BiomeSight follow-up not run so far this year. To be clear, more flatulence isn't intrinsically better, but seems to correlate with better GI movement. And I've not had a notable issue with gas related bloating. |
12/ To assess orthostatic intolerance (borderline POTS), I've been doing a mini-NASA lean test every day I get up from bed.
Pulse rate rises have almost halved, from ~40 to ~20bpm (rebounding a little recently). Data from my Omron pressure cuff.
Pulse rate rises have almost halved, from ~40 to ~20bpm (rebounding a little recently). Data from my Omron pressure cuff.
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See next graph's ALT text for more comprehensive list of features. But: - Drastic decrease in pulse rate rises imply blood volume increase and/or neurotransmitter (norepinephrine suspected) improvements. - Spike in pulse rate rises in July 2024 potentially from start of potassium. But various other explanations may fit. |
13/ Less HR increase on standing. But also slightly higher HR in bed. (Catecholamines up? Bradycardia previously?)
Blood pressure (BP) readings all dipped down after Covid2. Then rose *preceding* insomnia reactions. (Electrolytes, minerals?)
Pulse pressure (PP) unsure meaning.
19/ Almost everything that's helped me I've tried/failed before, or was still taking! In different forms and lesser amounts.
Here's most of my ~40 supplement current regimen (copy sideways to read easier). BornFree would be 60+ in greater quantities.
Blood pressure (BP) readings all dipped down after Covid2. Then rose *preceding* insomnia reactions. (Electrolytes, minerals?)
Pulse pressure (PP) unsure meaning.
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Data exported from my Omron wireless pressure cuff and plotting in a separate spreadsheet. The pulse rate rises, in the previous tweet's graph, were calculated by subtracting the laid down pulse rate (orange) from the stand pulse rate (light blue). Features show: - Decrease in laid and stood systolic BPs after second covid (March 2024) which take most the year to recover upwards. - Small spike in HR rise with Covid 2. - Large 2 month increase in standing pulse rate, and dip in standing systolic pressure, starting in June 2024. Possibly following introduction of supplemental potassium (and phosphate). Implication being potassium decreased blood volume. But other factors may have been at play. - Standing pulse rate increase falling from start of the year (environmental avoidance), as laid pulse increases a little (Implying it was too low). - Laid BPs also increase slightly. |
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| I think an immediate drop in pulse pressure is healthy-normal? But mine seemed to have improved from dropping further and being generally lower, both laid and standing. |
14/ I started get-up measurements 2 years ago: Twitter. Per @angryhacademic @Naomi_D_Harvey
Hoping to see if my HR rise would predict productivity that day, per @KatBoniface @hiimchiralkthx: Twitter.
15/ I've held back a couple dozen more graphs for a part 2 thread. They are mostly less decisive, covering:
- More nuanced patterns: symptom burden, sleep, libido, etc.
- Light therapy, NIR.
- Heart rate & HRV trackers: Visible band, Fitbit, Garmin, Welltory.
- Temp, pH, etc..?
16/ I think the BornFree protocol has a wide applicability to #MEcfs, #LongCovid, etc. As @Joshua_TM says...
... But unfortunately narrow accessibility for now: complex execution, indecipherable info, cost. My overview explainer thread: Twitter.
17/ My main inaccessibility: admin off ordering various supplements (internationally) while cost conscious.
So I've been slowly blundering in piecemeal. Not ideal, nor is my current regiment; I've pulled back from many good supp's that wreck my next day
energy & cog' function...
18/ ... Prioritising electrolytes (always essential), key trace metals that tested low, and generally targeting supps that should optimise norepinephrine (NorE) synthesis. To bootstrap top-dow thinking (my weakest link).
A different take to @tamararivc's: Twitter.
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| Clip from Joshua Leisk's huge Figure 1 diagram of (mitochondrial) metabolism/dysfunction. Focus on the catecholamine synthesis section. - Substances needed to support Norepinephrine (NorE) production highlighted in green. - Problems caused by low/dysfunctional levels of NorE, etc, highlighted in red (on the right). Mostly autonomic. I'd like to make another thread focusing on this topic. (Maybe discuss the intersection with Tamara Carnac's hypothesis.) Also on all the minerals and testing them. |
19/ Almost everything that's helped me I've tried/failed before, or was still taking! In different forms and lesser amounts.
Here's most of my ~40 supplement current regimen (copy sideways to read easier). BornFree would be 60+ in greater quantities.
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20/ Other protocol parts..:
Lymphatic massage: 2 minute routine, from armpits, down neck, head/face. (Don't feel impact.)
Food: I was already on the low histamine & oxalate + high protein diet (recommended), from past struggles. Also low FODMAP & IgG exclusions: https://x.com/Z3R0Gravitas/status/1669518462358519809
21/ I'm pretty sure that I wouldn't have seen such improvements without moving out of my loft conversion bedrooms.
Seems they had a mycotoxin (mold) issue from rotten roof gable ends. Now mostly replaced. Pressure to return, but cleanup is ??? & VOCs *now* elevated, ironically.
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| Green mold/algae growing through the corner of an asbestos soffit (for decades). Replaced in January, with much difficulty dealing with a company not quite willing/able to do full roof work. I also ran out of wearable clothes, having to buy more to cover me (literally) while I figured out a viable washing regiment. At great expense of personal energy, time, resources and lost clothing durability. Intolerance was hard to pin down, with delayed reactions. So having to go by scent/discomfort, that has been hard enough to resolve, but still not covered the whole issue. I'm currently using unscented detergent, then re-washing in 500ml vinegar, to strip the residues off... |
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| Most of the gable end timber was rotten and worse on this side of the dormer roof, adjacent to the spare bedroom I moved into (after ruining the room on the other side with ozone). |
22/ From the timing of the reactions (and slight improvements before) I'm thinking the nutrients I added might have provoked sensitivity, or... Detox?
See big thread on my sleep-bounce insomnia reactions: Twitter.
See big thread on my sleep-bounce insomnia reactions: Twitter.
23/ The improvement period mostly wasn't fun; reactions causing/leading to dark hopeless thoughts...
Winter a continuous scramble (without a PC); new capabilities eaten by extra challenges, swamped until April.
My current situation is as tenuous as ever, still stuck on sofa.
Winter a continuous scramble (without a PC); new capabilities eaten by extra challenges, swamped until April.
My current situation is as tenuous as ever, still stuck on sofa.
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| Graph plotting depression, showing a bit spike in November 2024: - The environmental reactions involve a neurotransmitter roller-coaster, with being wired at night and then depressed during the day. Dark, existential thoughts. - Also, the difficulty of the situation and complications of trying to resolve each little subsequent task were overwhelming. Eating up all additional function out until April. |
24/ A big challenge now is a lack of discretionary time to get big research and things like this done.
I need contiguous chunks, but mostly have only slivers in the whirling merry-go-round of meals. To stay on a 24h rhythm. Extra distractions, with no quiet room of my own ,etc.
I need contiguous chunks, but mostly have only slivers in the whirling merry-go-round of meals. To stay on a 24h rhythm. Extra distractions, with no quiet room of my own ,etc.
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| A rough itinerary of my days, at the moment. With substantial variation in capability, depending mostly on issues with whatever supplement I'm trying to tolerate next. Moderately good day and best case days shown. Mostly, eating my first dinner still wrecks my energy for an hour or few. But breakfast not any more. |
25/ So this mega-post has taken a few weeks to pull together!
Which begs the question of posting a bunch of other important threads I've been wanting to, for months/years.
Writing this raised more topics - I hoped to pull out various parts I've crammed in above.
26/ Anyway, this post is to ask for input as well as report details of success!
Eg: I'm still lost in mold remediation & chemical sensitivities.
Questions welcomed, to decide what I post next. Requests for data too. Or for me to do a quick comparison of specific things.
Eg: I'm still lost in mold remediation & chemical sensitivities.
Questions welcomed, to decide what I post next. Requests for data too. Or for me to do a quick comparison of specific things.
27/ My tracking spreadsheet has ~150 data columns, including:
- Separate symptoms
- Foods of interest
- Supplements (almost all)
- Imported data
- Key measures & times manually input
- Diary for context, etc.
I can quickly select any 2 fields to graph and correlate.
- Separate symptoms
- Foods of interest
- Supplements (almost all)
- Imported data
- Key measures & times manually input
- Diary for context, etc.
I can quickly select any 2 fields to graph and correlate.
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Zoomed out screenshot of my main tracking sheet. Diary & issue columns hidden. List of columns (data sets): Date, Day - [Times] Breakfast, Dinner, Bed - [Bio] BM time (first), BM Bristol # (ave), BMs (Count), [Diff] BMs (Count), BM Details, BM Amount, Gassiness (0-2), Pee pre-get-up, Sleep (h, total), Main Sleep, Nap, Temp (ear, get-up), Weight (kg), Urine pH (sticks), Urine cloudy - [Function] Crash hours, Productivity, Physical Tasks, Walkies (steps), Bike Ride (min), Music Joy (0-4), Gaming (h), Outside light (h), NIR use (min), NIR places, Lymph drain, Nasal Rinse, Ear clean (outer), M (Libido), Shower, Sainsbury's, Water plants, Toxic bedroom (h), Air-con on?, Laundry, Change, Clothes, Vacuum - [Symptoms] Fasciculations, Int' vibrations, Tinnitus, Dry Eyes, Hypoglycemia, Depression, Anxiety (DMN overdrive), , Kidney aches, Parosmia (burn, etc), Nausea, Dysgraphia/flush, Neck issue, Joint issues, Spine/back, Muscle ache, Muscle Weakness, Hot Sleep, Pale Stool, Sore scalp, Stuffy nose, Insomnia (glitch), Numb tingle lipEye twitch (fasc 2), Wrist pain (thyroid), Eye defocus - [Foods] OATs (Poridge), Breakfast Fruit, Chia Seeds (grams), Egg, Peas, Nuts (Macadamia, etc), Beans (Lima/Black), Spring Onions, Brown Rice, Seeds, Water Chestnuts, Salad, Root Veg (extra), Thyme, Brocolli, Ginger, Coconut cream, Goat's Milk (ml), Lime, Quinoa, Flax/Linseed, Asparagus, Baby Corn, Mellon, Nairns, Chocolate (dark), Crisps, Tortia Chips, Notable Food, salmon, [BlueBerries], [Brazils], [Walnuts], [Pumpkin seeds], [Details], - [Details] Supplement changes, Reasoning, Issues, Diary, Conclusions - [Pedometer] - [Fitbit] RHR (Fitbit), HR Bkf Plateau, Time above 65bpm (Fitbit), Time above 80bpm (Fitbit), HRV (Fitbit), Breaths/min (Fitbit), Sleep Score, Fitbit), Deep sleep (Fitbit, mins) - [Visible] Pace Points (Visible), Stability (Visible), HRV (Visible, bed), RHR (Visible, bed), Concise day summary - [Omron BP Cuff] Combi-time daily, Laid Systolic (mmHg), Laid Diastolic (mmHg), Laid Pulse (bpm), Laid PP (mmHg), Stand Systolic (mmHg), Stand Diastolic, (mmHg), Stand Pulse (bpm), Stand PP(mmHg), Systolic Rise (mmHg), Diastolic Rise (mmHg), Pulse Rise (bpm), PP Change (mmHg) - [Welltory] HRV Stress (Welltory) HRV Energy (Welltory) - [Supplements] {See above} |
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| Graph of total cells in each date (row) with some data entered. Line ramps up from 50 to 150 over the 830 day period. A jump up occurs in December 2023 with the addition of all the supplement amounts (temporary dip during Covid2 is failure to record these). |
Part 2 to be linked here on completion (if and when).
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