ME/CFS for about eight years, somewhat better after diet and vitamin B1
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 8 years
- Last post
- Mar 2023
In their words
- At worst: Mild
I read the news, eat properly, get to work happier.
In context ↗ - Now: Somewhat better
Allowed me to get out and about, and live more of a life which lowered stress too. ... I can achieve more than I have in the last six years, but in incremental steps.
In context ↗
Read from 18 of their posts and comments; links to the 11 this page draws on
Summary
Stream 49922 had ME/CFS for about eight years by 2022. They credited a diet cutting alcohol, caffeine and added sugar with a marked difference, and later high-dose vitamin B1 with calcium, magnesium and vitamin D3 with allowing them to get out and about more. They remained ill and still crashed after coffee, though sugar affected them less than before. One unspecified event once caused a two-week setback, but they returned to usual after that.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- Nutribullet powders (flax, chia, maca, goji, wheatgrass) · Worse
I've skipped the powders and woke up on Monday feeling like a teenager. Night and day the difference.
In context ↗ - High-vegetable diet and daily blended smoothie · Helped
Blend up five whole vegs and leaves of any sort with water and dry oats to make a pint, get it down you daily.
In context ↗ - Quitting alcohol and added sugar · Helped
it was these things have been a gear change for me.
In context ↗ - Quitting caffeine · Helped
The first three days are terrible (I used to drink 5+ cups a day), but now I sleep so much better
In context ↗ - Meditation · Helped
Meditation has contributed a lot to this, as has changing my expectations in life
In context ↗ - Pacing and stopping to rest at the first signs · Helped
Doing this, I can achieve more than I have in the last six years, but in incremental steps.
In context ↗ - Vitamin B1 (Thiamine Hydrochloride) · Helped a lot
I have been taking 700mg-1000mg of Vitamin B1 (Thiamine Hydrochloride) which has made a huge positive difference.
In context ↗ - Lamberts B Complex · No change
which I've not noticed any difference with yet, about two weeks in.
In context ↗ - Heart-rate monitoring with a fitness tracker · Not said
I've been told to not go over 100bpm if possible (stairs) and to note the bpm if I'm having a flare up (life).
In context ↗
Approaches: Diet · Mind-body practices · Pacing · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. The chart starts 4 years after onset: the story doesn’t say how ill they were before that. 4 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2014 | became ill with ME/CFSI've been ill for eight years.In context ↗ | Not stated | |
| 2016-08-13 | diet change: vegetables, no alcohol, caffeine or added sugarI've seen a marked difference recently by eating as many vegetables as possible.In context ↗ | Not stated | |
| 2018-01-27 | worsened by pushing through symptomsI made myself 100 times worse by battling on regardless.In context ↗ | Mild | |
| 2018-04-15 | high-dose vitamin B1I have been taking 700mg-1000mg of Vitamin B1 (Thiamine Hydrochloride) which has made a huge positive difference.In context ↗ | Not stated | Thiamine / benfotiamine |
| 2019-04-14 | crashed for two weeks after surgery with general anaesthesiait kick me sideways for two weeks, which I was surprised by, but I came back to usual after that.In context ↗ | Not stated | |
| 2019-10-15 | B1 and minerals allowed more activityAllowed me to get out and about, and live more of a life which lowered stress too.In context ↗ | Mild | Thiamine / benfotiamine |
| 2022-01-17 | still ill; sugar crashes less severe, coffee still causes a crashFour years ago, if I had a slice of cake I'd crash afterwards, now it's not so bad - but still an exception.In context ↗ | Mild |
Adverse events
- Cutting out caffeine“The first three days are terrible (I used to drink 5+ cups a day), but now I sleep so much better” In context ↗ Withdrawal problems
Symptoms mentioned
Their words about their symptoms
- Sleep problems
now I sleep so much better, fall asleep quickly, wake up less sluggish
In context ↗ - Anxiety & low mood
Things like anxiety, stress and being locked to a computer screen; these all bring on symptoms and drag me down pretty quickly.
In context ↗
Ask Miruvor AI
Similar stories
-
Partly bedbound with long COVID, now much better after low-histamine diet and supplements
Long COVID began in December 2023 after a mild infection, with constant depersonalisation, panic attacks, insomnia and breathlessness; at worst suicidal; partly bedbound from PEM. A strict low-histamine diet, cold showers, breathing work, yoga nidra and…
-
Long COVID with PEM and brain fog, now close to normal after keto and fasting
Lake 45346 got long COVID after a COVID infection in August 2022 and had PEM, brain fog, broken sleep and carb intolerance. He credits keto, fasting, fermented foods, low-dose naltrexone, cold plunges, nightly guanfacine, sauna and high-dose thiamine TTFD…
-
Bedbound at worst with long COVID, now much better with pacing and supplements
Pebble 85566 caught Covid in early 2025 while burnt out and developed long Covid with POTS and ME/CFS, becoming bedbound at worst. Pacing and naturopath-prescribed supplements, which they credit, brought them to moderate/mild by January 2026. A five-week…
-
Not enough detail to draw a path
Unable to walk for a few weeks with long COVID, now much better after meditation and LDN
Fjord 60658 caught COVID in March 2020 and long COVID began that June, leaving them unable to walk for a few weeks. Improvement came about two years in, after months of disability leave spent meditating in a dark room, and later nortriptyline, LDN and sleep…