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.
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.
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:
4/ All above annotations are listed in this table. Maybe easier to parse & gives exact dates (splitting some of the labels).
[Sheet linked in image ALT text, for anyone wanting to re-order or search it.]
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).
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?
7/ I use the trick of taking melatonin 6h before desired bed (that I suspect might work for DSPS too):
Oddly, the recommended 0.3mg dose still wrecks my next day function and mood. But 3-5mg *or more* is fine.
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.
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.
11/ Scoring scales & details in [ALT] texts.
- Music enjoyment way up!
- Physical tasks up.
- BMs back to better GI consistency (food additions were also made, eg chia seeds).
- Gassiness trends upwards roughly in line with BM and general improvements (gut biome change?).
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.
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.
14/ I started these get-up (from bed) measurements 2 years ago: x.com/Z3R0Gravitas/s… Per @angryhacademic @Naomi_D_Harvey.
Hoping to see if my HR rise would predict productivity that day, per @KatBoniface @hiimchiralkthx: x.com/KatBoniface/st…
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx 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..?
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx 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:
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx 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...
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx 18/ ... Prioritising electrolytes (always essential), key trace metals that tested low, & generally targeting supps that should optimise norepinephrine (NorE) synthesis. To bootstrap top-down thinking (my weakest link).
A different take to @tamararivc's: x.com/tamararivc/sta…
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx @tamararivc 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.
Other protocol parts..:
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx @tamararivc 20/ 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:
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx @tamararivc 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.
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx @tamararivc 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:
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx @tamararivc 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.
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx @tamararivc 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.
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx @tamararivc 25/ So this mega-post has taken a few weeks to pull together!
Which calls into question posting any of a bunch of other important threads I've been wanting to, for months/years.
Writing this raised more topics - I hoped to dig more into various parts I've crammed in above.
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx @tamararivc 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.
@angryhacademic @Naomi_D_Harvey @KatBoniface @hiimchiralkthx @tamararivc 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.
28/ All the above info is duplicated on my newly organised health blog (ALT text as image captions): zerogravitashealth.blogspot.com/2025/05/mecfs-…
Thread reader unroll (lacks ALT text): x.com/threadreaderap…
Tagging... Renegade Researchers & adjacent: @RenegadeRes @remissionbiome @tessfalor @IsabelRamirezRD @Really_Richelle @KatBoniface @NovaSupport @SplendidSpeseia @TaraFotiPhD @Fighting_LC @Canal1point5 @emmiskyten @TopazStudiosCOM @sunsopeningband @doc4care @RenzPolster
@arta_semita @LongHaulerBear @ThosVarley
Data nerds (quick analysis suggestions and data sharing welcome): @wecrunchme @RorPreston @JackHadfield14 @HarryLeeming @visible_health
Some twitter-active BornFree types: @joshual_tm @RachelO87357156 @noralove
Boffins (who've helped me 🙏): @exceedhergrasp1 @MarekSJF @lifeanalytics @JeffLubell_C19 @Vickyvdtogt @renesugar @AllyTransforms @SEPfieldPatient @KinSpin @8Eevert @arisonsned @arianek @PanickedFoodie @emily_rj @internetuserf12 @MeredithWTS @DiamonDie @CortJohnson @jenbrea
Mates & general interest (sorry I've been haphazard): @HoagieHoag @davro_t @Loster @mc_cheapo @PlanetEarth_HD @elle_carnitine @Nick_Wellings @cfs_jo @Annakwood @subversivepsych @KSchnickelfritz @IleanaNaish @PaulRKeeble @BottsieHicks @TomKindlon @Gmwetz @MatthewJDalby ...
@Dan_Wyke @laurenancona @ahandvanish @FatigueMe92484
Mold/environmental toxin experts/experienced, etc: @julierehmeyer @scott_scientist @dr_todd @x3r0gx4 @SamRNolen @chydorina @irishiker @Yrrepmot @crispychipp..? Sorry, I should know more.
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